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Could someone tell me what a Mitotic Rate of 5 Means?

Forums General Melanoma Community Could someone tell me what a Mitotic Rate of 5 Means?

  • Post
    Minnesota
    Participant
      Resolved

      I am newly diagnosed from an excision biopsy, and the only information I have is from a phone call yesterday. I meet with a surgeon next week who is going to do the sentinel lymph node biopsy.

      All I know is that I have SSM, it was 1.45 mm?, and had a mitotic rate of 5. 

      I got the impression from the doctor's phone call that 5 was a bad number.

      I am very scared, if someone could give me even a sentence of positive news, I would really appreciate it. Thanks.

      I am newly diagnosed from an excision biopsy, and the only information I have is from a phone call yesterday. I meet with a surgeon next week who is going to do the sentinel lymph node biopsy.

      All I know is that I have SSM, it was 1.45 mm?, and had a mitotic rate of 5. 

      I got the impression from the doctor's phone call that 5 was a bad number.

      I am very scared, if someone could give me even a sentence of positive news, I would really appreciate it. Thanks.

    Viewing 18 reply threads
    • Replies
        Janner
        Participant

          You don't have enough info to be scared.  Mitotic rate is NOT the most important factor in a prognosis.  The Breslow depth of 1.45mm? is the most important.  Ideally, you'd like a mitotic rate of 0.  However, that's hardly the norm.  The mitotic rate is an indication of how fast the cancer cells are dividing.  However, even people with higher mitotic rates don't have to have spread.  It's just one piece of the puzzle but not the whole picture.

          Here's what I'd suggest.  First, get a copy of your pathology report so you know exactly what it says.  Second, make sure you are seeing a melanoma specialist.  You will be scheduling a WLE (wide local excision) and a SNB (sentinel node biopsy) soon.  The WLE is to make sure that no additional cancer cells remain in the skin.  The SNB will check to see if any cells have traveled to the lymph nodes.  Until you get the results of these tests, you will be in staging limbo.  And until you get your stage, there is no way to discuss treatment options or prognosis. 

          Hang in there.  It's tough when you are newly diagnosed to learn the jargon and get your head around everything.  Take your time.  Write down your questions for your doctor so you don't forget anything.  And try to take someone to your appointments – it's easier to remember things with 2 heads!

          Best wishes,

          Janner

          Janner
          Participant

            You don't have enough info to be scared.  Mitotic rate is NOT the most important factor in a prognosis.  The Breslow depth of 1.45mm? is the most important.  Ideally, you'd like a mitotic rate of 0.  However, that's hardly the norm.  The mitotic rate is an indication of how fast the cancer cells are dividing.  However, even people with higher mitotic rates don't have to have spread.  It's just one piece of the puzzle but not the whole picture.

            Here's what I'd suggest.  First, get a copy of your pathology report so you know exactly what it says.  Second, make sure you are seeing a melanoma specialist.  You will be scheduling a WLE (wide local excision) and a SNB (sentinel node biopsy) soon.  The WLE is to make sure that no additional cancer cells remain in the skin.  The SNB will check to see if any cells have traveled to the lymph nodes.  Until you get the results of these tests, you will be in staging limbo.  And until you get your stage, there is no way to discuss treatment options or prognosis. 

            Hang in there.  It's tough when you are newly diagnosed to learn the jargon and get your head around everything.  Take your time.  Write down your questions for your doctor so you don't forget anything.  And try to take someone to your appointments – it's easier to remember things with 2 heads!

            Best wishes,

            Janner

            Janner
            Participant

              You don't have enough info to be scared.  Mitotic rate is NOT the most important factor in a prognosis.  The Breslow depth of 1.45mm? is the most important.  Ideally, you'd like a mitotic rate of 0.  However, that's hardly the norm.  The mitotic rate is an indication of how fast the cancer cells are dividing.  However, even people with higher mitotic rates don't have to have spread.  It's just one piece of the puzzle but not the whole picture.

              Here's what I'd suggest.  First, get a copy of your pathology report so you know exactly what it says.  Second, make sure you are seeing a melanoma specialist.  You will be scheduling a WLE (wide local excision) and a SNB (sentinel node biopsy) soon.  The WLE is to make sure that no additional cancer cells remain in the skin.  The SNB will check to see if any cells have traveled to the lymph nodes.  Until you get the results of these tests, you will be in staging limbo.  And until you get your stage, there is no way to discuss treatment options or prognosis. 

              Hang in there.  It's tough when you are newly diagnosed to learn the jargon and get your head around everything.  Take your time.  Write down your questions for your doctor so you don't forget anything.  And try to take someone to your appointments – it's easier to remember things with 2 heads!

              Best wishes,

              Janner

                Erinmay22
                Participant

                  Yes I have found thru all this my doctors very rarely talk about the mitotic rate.  My initial paperwork only stated that the tumor (mine was 4.5mm nodular upper right back) was >1.  It wasn't until my 2nd surgery when I was reading the surgeons notes that it stated the original tumor had a rate of 15! 

                  So sorry to have to 'meet' you here but folks are a great wealth of information and support!

                  Erin

                  MikeChris
                  Participant
                    Erin, you are the first post I have seen that is close to my husbands case. He also is modular with a rate of 9….. And original tumor was 2.5…he has had two recurrences in two years last procedure was a limb perfusion…next scan is in one week and the butterflies are starting already……we go to mayo clinic and love the doctors but would like to know what others in our situation are doing.
                    MikeChris
                    Participant
                      Erin, you are the first post I have seen that is close to my husbands case. He also is modular with a rate of 9….. And original tumor was 2.5…he has had two recurrences in two years last procedure was a limb perfusion…next scan is in one week and the butterflies are starting already……we go to mayo clinic and love the doctors but would like to know what others in our situation are doing.
                      MikeChris
                      Participant
                        Erin, you are the first post I have seen that is close to my husbands case. He also is modular with a rate of 9….. And original tumor was 2.5…he has had two recurrences in two years last procedure was a limb perfusion…next scan is in one week and the butterflies are starting already……we go to mayo clinic and love the doctors but would like to know what others in our situation are doing.
                        Erinmay22
                        Participant

                          Yes I have found thru all this my doctors very rarely talk about the mitotic rate.  My initial paperwork only stated that the tumor (mine was 4.5mm nodular upper right back) was >1.  It wasn't until my 2nd surgery when I was reading the surgeons notes that it stated the original tumor had a rate of 15! 

                          So sorry to have to 'meet' you here but folks are a great wealth of information and support!

                          Erin

                          Erinmay22
                          Participant

                            Yes I have found thru all this my doctors very rarely talk about the mitotic rate.  My initial paperwork only stated that the tumor (mine was 4.5mm nodular upper right back) was >1.  It wasn't until my 2nd surgery when I was reading the surgeons notes that it stated the original tumor had a rate of 15! 

                            So sorry to have to 'meet' you here but folks are a great wealth of information and support!

                            Erin

                          Minnesota
                          Participant

                             

                            Thank you both so much, I tried looking for information on the mitotic rate and all I could find was articles about how it was becoming more important, but nothing that gave an indiction about what the numbers meant, other than 0 was good (and I knew I didn't have 0).

                            My pathology report is being sent to me. My doctor isn't a melanoma specialist, but he did his residency at Mayo Clinic, so hopefully he will be referring me to the right people. I know that the surgeon I'm seeing is a general surgeon to do the SLNB. I wish I didn't have to "meet" with her first – right now I am wanting that surgery done yesterday, and I don't know if they are going to do the wide excision thing at the same time, but I suppose those questions will be answered next week.

                            I also have an autoimmune disease called Gestational Pemphigoid, which was the result of pregnancy a little more than 11 years ago, and I've never had a remission. It's a blistering disease. I have since developed other autoimmune issues, but this post would get too long if I went into detail.

                            I found a Japanese research article yesterday that said that they found high levels of the BPAG1 (pemphigoid) autoantibody in melanoma patients and are working to see if that information can be developed into becoming a marker for melanoma detection. I was already saturated with BPAG1 and BPAG2 autoantibodies prior to this melanoma being discovered. At least that might give some explanation as to why I got this.

                            I am upset that I have literally been under the microscope dermatology-wise for 11 years, even grand rounds sessions at the University of Minnesota for conferences.

                            Thanks again for the replies, I will try not to think about the mitotic number, and will wait for the biopsy results.

                             

                            Minnesota
                            Participant

                               

                              Thank you both so much, I tried looking for information on the mitotic rate and all I could find was articles about how it was becoming more important, but nothing that gave an indiction about what the numbers meant, other than 0 was good (and I knew I didn't have 0).

                              My pathology report is being sent to me. My doctor isn't a melanoma specialist, but he did his residency at Mayo Clinic, so hopefully he will be referring me to the right people. I know that the surgeon I'm seeing is a general surgeon to do the SLNB. I wish I didn't have to "meet" with her first – right now I am wanting that surgery done yesterday, and I don't know if they are going to do the wide excision thing at the same time, but I suppose those questions will be answered next week.

                              I also have an autoimmune disease called Gestational Pemphigoid, which was the result of pregnancy a little more than 11 years ago, and I've never had a remission. It's a blistering disease. I have since developed other autoimmune issues, but this post would get too long if I went into detail.

                              I found a Japanese research article yesterday that said that they found high levels of the BPAG1 (pemphigoid) autoantibody in melanoma patients and are working to see if that information can be developed into becoming a marker for melanoma detection. I was already saturated with BPAG1 and BPAG2 autoantibodies prior to this melanoma being discovered. At least that might give some explanation as to why I got this.

                              I am upset that I have literally been under the microscope dermatology-wise for 11 years, even grand rounds sessions at the University of Minnesota for conferences.

                              Thanks again for the replies, I will try not to think about the mitotic number, and will wait for the biopsy results.

                               

                              Minnesota
                              Participant

                                 

                                Thank you both so much, I tried looking for information on the mitotic rate and all I could find was articles about how it was becoming more important, but nothing that gave an indiction about what the numbers meant, other than 0 was good (and I knew I didn't have 0).

                                My pathology report is being sent to me. My doctor isn't a melanoma specialist, but he did his residency at Mayo Clinic, so hopefully he will be referring me to the right people. I know that the surgeon I'm seeing is a general surgeon to do the SLNB. I wish I didn't have to "meet" with her first – right now I am wanting that surgery done yesterday, and I don't know if they are going to do the wide excision thing at the same time, but I suppose those questions will be answered next week.

                                I also have an autoimmune disease called Gestational Pemphigoid, which was the result of pregnancy a little more than 11 years ago, and I've never had a remission. It's a blistering disease. I have since developed other autoimmune issues, but this post would get too long if I went into detail.

                                I found a Japanese research article yesterday that said that they found high levels of the BPAG1 (pemphigoid) autoantibody in melanoma patients and are working to see if that information can be developed into becoming a marker for melanoma detection. I was already saturated with BPAG1 and BPAG2 autoantibodies prior to this melanoma being discovered. At least that might give some explanation as to why I got this.

                                I am upset that I have literally been under the microscope dermatology-wise for 11 years, even grand rounds sessions at the University of Minnesota for conferences.

                                Thanks again for the replies, I will try not to think about the mitotic number, and will wait for the biopsy results.

                                 

                                Minnesota
                                Participant

                                  I just read both your profiles, and wanted to say thanks again for taking the time to write to me. I know it must be hard to deal with the new people like me who have no information and don't know a thing about any of this. I started a support group for my original autoimmune disease more than 10 years ago – we're very tiny because the instance is 1 in 2 million, so new people are few and far between.

                                  Janner, this may not be anything, but the sections where you wrote about having problems with steri-strips and adhesives stood out for me. People with BPAG1 autoantibodies usually cannot tolerate any adhesives. Those autoantibodies attack the protein that makes skin adhere to your body. If you stick anything on the skin, it causes immediate inflammation, and sometimes the skin will lift up and come right off (this is what has been happening to me since my excision biopsy).

                                  Why someone would have those autoantibodies without blistering is beyond me, but since they're finding them in melanoma patients, it must be so.

                                  Minnesota
                                  Participant

                                    I just read both your profiles, and wanted to say thanks again for taking the time to write to me. I know it must be hard to deal with the new people like me who have no information and don't know a thing about any of this. I started a support group for my original autoimmune disease more than 10 years ago – we're very tiny because the instance is 1 in 2 million, so new people are few and far between.

                                    Janner, this may not be anything, but the sections where you wrote about having problems with steri-strips and adhesives stood out for me. People with BPAG1 autoantibodies usually cannot tolerate any adhesives. Those autoantibodies attack the protein that makes skin adhere to your body. If you stick anything on the skin, it causes immediate inflammation, and sometimes the skin will lift up and come right off (this is what has been happening to me since my excision biopsy).

                                    Why someone would have those autoantibodies without blistering is beyond me, but since they're finding them in melanoma patients, it must be so.

                                      Janner
                                      Participant

                                        Interesting about the autoantibodies.  I certainly have a bad reaction, but never to the point of skin lifting off.  I have become quite creative avoiding adhesives with interesting bandaging.

                                        You will have both the WLE and the SNB at the same setting.  The SNB has to be done first.  You want to map the sentinel node before any more skin is removed in the WLE.  You want to make sure the drainage path that you originally had with the melanoma is still the same.  If you do the WLE first, you remove a large chunk of skin that may alter the drainage path.  They are typically done under general anesthesia at the same time with the SNB first followed by the WLE.  The WLE will remove a large chunk of tissue so you can start planning how you are going to keep that bandaged.

                                        Sorry you had to join us here.  There are other people with other auto-immune diseases here.  Since melanoma seems to be quite closely to the immune system, it seems that we more than our share here with melanoma, too.

                                        Hang in there and feel free to ask any questions!

                                        Janner

                                        Janner
                                        Participant

                                          Interesting about the autoantibodies.  I certainly have a bad reaction, but never to the point of skin lifting off.  I have become quite creative avoiding adhesives with interesting bandaging.

                                          You will have both the WLE and the SNB at the same setting.  The SNB has to be done first.  You want to map the sentinel node before any more skin is removed in the WLE.  You want to make sure the drainage path that you originally had with the melanoma is still the same.  If you do the WLE first, you remove a large chunk of skin that may alter the drainage path.  They are typically done under general anesthesia at the same time with the SNB first followed by the WLE.  The WLE will remove a large chunk of tissue so you can start planning how you are going to keep that bandaged.

                                          Sorry you had to join us here.  There are other people with other auto-immune diseases here.  Since melanoma seems to be quite closely to the immune system, it seems that we more than our share here with melanoma, too.

                                          Hang in there and feel free to ask any questions!

                                          Janner

                                          Janner
                                          Participant

                                            Interesting about the autoantibodies.  I certainly have a bad reaction, but never to the point of skin lifting off.  I have become quite creative avoiding adhesives with interesting bandaging.

                                            You will have both the WLE and the SNB at the same setting.  The SNB has to be done first.  You want to map the sentinel node before any more skin is removed in the WLE.  You want to make sure the drainage path that you originally had with the melanoma is still the same.  If you do the WLE first, you remove a large chunk of skin that may alter the drainage path.  They are typically done under general anesthesia at the same time with the SNB first followed by the WLE.  The WLE will remove a large chunk of tissue so you can start planning how you are going to keep that bandaged.

                                            Sorry you had to join us here.  There are other people with other auto-immune diseases here.  Since melanoma seems to be quite closely to the immune system, it seems that we more than our share here with melanoma, too.

                                            Hang in there and feel free to ask any questions!

                                            Janner

                                          Minnesota
                                          Participant

                                            I just read both your profiles, and wanted to say thanks again for taking the time to write to me. I know it must be hard to deal with the new people like me who have no information and don't know a thing about any of this. I started a support group for my original autoimmune disease more than 10 years ago – we're very tiny because the instance is 1 in 2 million, so new people are few and far between.

                                            Janner, this may not be anything, but the sections where you wrote about having problems with steri-strips and adhesives stood out for me. People with BPAG1 autoantibodies usually cannot tolerate any adhesives. Those autoantibodies attack the protein that makes skin adhere to your body. If you stick anything on the skin, it causes immediate inflammation, and sometimes the skin will lift up and come right off (this is what has been happening to me since my excision biopsy).

                                            Why someone would have those autoantibodies without blistering is beyond me, but since they're finding them in melanoma patients, it must be so.

                                            Minnesota
                                            Participant

                                              Thank you, I was wondering when they'd do the WLE, and why they don't do that right away. It makes sense now.

                                              I have a million questions, but none that I really want an answer to because everything seems awful. I am going to follow your advice and get through this upcoming surgery before I make myself sick with things that might not apply to me right now. 

                                              Its nice to have a place to go to ask/write something. I feel like I've already hurt my family terribly just by telling them what was found. 

                                               

                                              Minnesota
                                              Participant

                                                Thank you, I was wondering when they'd do the WLE, and why they don't do that right away. It makes sense now.

                                                I have a million questions, but none that I really want an answer to because everything seems awful. I am going to follow your advice and get through this upcoming surgery before I make myself sick with things that might not apply to me right now. 

                                                Its nice to have a place to go to ask/write something. I feel like I've already hurt my family terribly just by telling them what was found. 

                                                 

                                                Minnesota
                                                Participant

                                                  Thank you, I was wondering when they'd do the WLE, and why they don't do that right away. It makes sense now.

                                                  I have a million questions, but none that I really want an answer to because everything seems awful. I am going to follow your advice and get through this upcoming surgery before I make myself sick with things that might not apply to me right now. 

                                                  Its nice to have a place to go to ask/write something. I feel like I've already hurt my family terribly just by telling them what was found. 

                                                   

                                                  Kelli100299
                                                  Participant

                                                    Good Morning,

                                                    Came across this message board because I to was diagnosed, January 3rd to be exact….Happy freaking New Year huh? I am scared too. I am married, with two children and the thought of not being there for them terrifies me. I keep playing it over and over in my head that my children will have to experience losing their mother to cancer. I did receive my pathology report, and had an appointment yesterday with a dermatologist (not that he was much help). He basically told me that I would have to see a surgeon for the procedure to check the nearest Lymph node. I actually didn’t even need that advice because the day after I received my diagnosis I found a Melanoma Surgeon and made an appointment. I have a Clark level of IV and a Breslow level of 1.2. When the dermatologist scanned the rest of my body he didn’t use that light, which I thought was odd. I have been to the dermatologist before and they had. I just feel like every mole on my body is now suspect and he didn’t seem concerned AT ALL. He told me the Clark Level wasn’t measured any longer and that I am stage II unless it has gotten into the lymph node, then Stage III. I am trying to remain positive as I know everyone’s case is specific to them, I just pray that I am here to see my children grow up. So, I basically wanted to reach out to you and let you know that you are not alone and if anyone has some thoughts for me I would appreciate it.…….Thanks!

                                                    Kelli100299
                                                    Participant

                                                      Good Morning,

                                                      Came across this message board because I to was diagnosed, January 3rd to be exact….Happy freaking New Year huh? I am scared too. I am married, with two children and the thought of not being there for them terrifies me. I keep playing it over and over in my head that my children will have to experience losing their mother to cancer. I did receive my pathology report, and had an appointment yesterday with a dermatologist (not that he was much help). He basically told me that I would have to see a surgeon for the procedure to check the nearest Lymph node. I actually didn’t even need that advice because the day after I received my diagnosis I found a Melanoma Surgeon and made an appointment. I have a Clark level of IV and a Breslow level of 1.2. When the dermatologist scanned the rest of my body he didn’t use that light, which I thought was odd. I have been to the dermatologist before and they had. I just feel like every mole on my body is now suspect and he didn’t seem concerned AT ALL. He told me the Clark Level wasn’t measured any longer and that I am stage II unless it has gotten into the lymph node, then Stage III. I am trying to remain positive as I know everyone’s case is specific to them, I just pray that I am here to see my children grow up. So, I basically wanted to reach out to you and let you know that you are not alone and if anyone has some thoughts for me I would appreciate it.…….Thanks!

                                                      Kelli100299
                                                      Participant

                                                        Good Morning,

                                                        Came across this message board because I to was diagnosed, January 3rd to be exact….Happy freaking New Year huh? I am scared too. I am married, with two children and the thought of not being there for them terrifies me. I keep playing it over and over in my head that my children will have to experience losing their mother to cancer. I did receive my pathology report, and had an appointment yesterday with a dermatologist (not that he was much help). He basically told me that I would have to see a surgeon for the procedure to check the nearest Lymph node. I actually didn’t even need that advice because the day after I received my diagnosis I found a Melanoma Surgeon and made an appointment. I have a Clark level of IV and a Breslow level of 1.2. When the dermatologist scanned the rest of my body he didn’t use that light, which I thought was odd. I have been to the dermatologist before and they had. I just feel like every mole on my body is now suspect and he didn’t seem concerned AT ALL. He told me the Clark Level wasn’t measured any longer and that I am stage II unless it has gotten into the lymph node, then Stage III. I am trying to remain positive as I know everyone’s case is specific to them, I just pray that I am here to see my children grow up. So, I basically wanted to reach out to you and let you know that you are not alone and if anyone has some thoughts for me I would appreciate it.…….Thanks!

                                                          Minnesota
                                                          Participant

                                                            Hi, I am so sorry you are having the same nightmare week as I am. How old are your kids? I have 4 kids and am married too. My youngest is 11. 

                                                            I kind of knew something was up by the way the dermatologist acted when I went in with the mole I had, so waiting from December 16 to January 3 seemed like a lifetime. I've probably seen 30+ dermatologists in the last 11 years, so nothing surprises me about how they act. One thing I learned is that doctors are trained to look for the most common thing, so if "most" people only have one melanoma site, their mind would tell them that they aren't going to see another. That's probably why he didn't use the light and the previous doctors did (because at that time they were looking for "the one"). I was told that I needed to come in every 3 months for a full body scan, and I haven't had one, so I said, "why aren't we checking now?" My doctor said, "we could if you want to, but the odds of finding another site are almost zero right now."  

                                                            I still haven't received my pathology report. My doctor said that he was sending it on Tuesday, and it doesn't take 3 days for it to travel 9 miles. If I wasn't such a wreck, I would drive to the office and stand there until they made a copy. I feel like they purposely waited until after the holidays to tell me, and now aren't sending me the report.. but I know that's not true – its really about the stupid paperwork and dealing with it, and the day getting too long after a boatload of patients.

                                                            My hope is that there are maybe lots of people who were in the same position as you and I, and then went through the SNB, did what they had to do, and then put this behind them. I am not sure we are seeing the whole picture, especially online. With my autoimmune disease, most go into remission at about 9 mos. post-partum, but I am at 11 years without a remission. If I would have recovered normally, I wouldn't have started a group, and I wouldn't have stuck with it. Even now, I have to be very careful with the new people because I don't want them to think that they will be like me, because the odds are that they won't. At the same time, most want to put me in a box to make me so different to explain why it can't happen to them.  In too many words, I am saying that I think we are in a better position than it appears right now.

                                                            I feel a lot better today about everything. I don't know who you've told, but we gave an abbreviated version to our two younger kids, a better explanation to the older kids, and my mom and 3 of my friends know. I told them that we have to wait for the SNB, and even if that's not good, it might have just stopped there, and even if it hasn't, then we'll just deal with what comes after that, but right now, that's as far as anyone is going to think. I don't know what is going on in my husband's mind, he refused to even discuss the biopsy, and at that point, I had no one else to talk to. He only says that he can't believe this, its impossible. I can tell he's been crying because his eyelids are purple. I feel like I've had to turn into some stepford version of myself to make everyone around me feel better. There should be someplace where you can go shout and break things (lol).

                                                            So, lets just say that the January 3rd club of two (so far) is going to be okay. We're going to have to do some stuff that sounds awful, but we'll get through it and look back and say it wasn't as bad as it sounded.

                                                            Minnesota
                                                            Participant

                                                              Hi, I am so sorry you are having the same nightmare week as I am. How old are your kids? I have 4 kids and am married too. My youngest is 11. 

                                                              I kind of knew something was up by the way the dermatologist acted when I went in with the mole I had, so waiting from December 16 to January 3 seemed like a lifetime. I've probably seen 30+ dermatologists in the last 11 years, so nothing surprises me about how they act. One thing I learned is that doctors are trained to look for the most common thing, so if "most" people only have one melanoma site, their mind would tell them that they aren't going to see another. That's probably why he didn't use the light and the previous doctors did (because at that time they were looking for "the one"). I was told that I needed to come in every 3 months for a full body scan, and I haven't had one, so I said, "why aren't we checking now?" My doctor said, "we could if you want to, but the odds of finding another site are almost zero right now."  

                                                              I still haven't received my pathology report. My doctor said that he was sending it on Tuesday, and it doesn't take 3 days for it to travel 9 miles. If I wasn't such a wreck, I would drive to the office and stand there until they made a copy. I feel like they purposely waited until after the holidays to tell me, and now aren't sending me the report.. but I know that's not true – its really about the stupid paperwork and dealing with it, and the day getting too long after a boatload of patients.

                                                              My hope is that there are maybe lots of people who were in the same position as you and I, and then went through the SNB, did what they had to do, and then put this behind them. I am not sure we are seeing the whole picture, especially online. With my autoimmune disease, most go into remission at about 9 mos. post-partum, but I am at 11 years without a remission. If I would have recovered normally, I wouldn't have started a group, and I wouldn't have stuck with it. Even now, I have to be very careful with the new people because I don't want them to think that they will be like me, because the odds are that they won't. At the same time, most want to put me in a box to make me so different to explain why it can't happen to them.  In too many words, I am saying that I think we are in a better position than it appears right now.

                                                              I feel a lot better today about everything. I don't know who you've told, but we gave an abbreviated version to our two younger kids, a better explanation to the older kids, and my mom and 3 of my friends know. I told them that we have to wait for the SNB, and even if that's not good, it might have just stopped there, and even if it hasn't, then we'll just deal with what comes after that, but right now, that's as far as anyone is going to think. I don't know what is going on in my husband's mind, he refused to even discuss the biopsy, and at that point, I had no one else to talk to. He only says that he can't believe this, its impossible. I can tell he's been crying because his eyelids are purple. I feel like I've had to turn into some stepford version of myself to make everyone around me feel better. There should be someplace where you can go shout and break things (lol).

                                                              So, lets just say that the January 3rd club of two (so far) is going to be okay. We're going to have to do some stuff that sounds awful, but we'll get through it and look back and say it wasn't as bad as it sounded.

                                                              Kelli100299
                                                              Participant

                                                                Hey Minnesota…thanks for the smile. I haven't had one all week….Sorry we are meeting like this, but I suppose what doesn't break us makes us stronger. I like the idea of "There should be someplace where you can go shout and break things (lol)." Imagine that, we were receiving the same new's on the same day…..crazy. My children and 9 and 6, and similar to you, I put them first. Most of my heartache is imagining the future and it not being as I planned. Talking to my daughter about boys, hair, clothes, shopping, weddings etc and my son about 'how' to treat girls, soccer, baseball, college, reading his writings about how much he worships his daddy. Then I think, Kelli, you are being dramatic….so I prefer to think like you, being in a better position, until I am told otherwise.

                                                                When you refer to the SNB, is that the dye/lymphnode surgery? I have not read up on all the acromyms and some of the medical terminology on this board is so confusing. I am impressed though with how people research everything and offer great advice. I am sure once this thing is further along, I will know many of the terms referenced.

                                                                As for who I have told, absolutely noone, which is why you and this board is a blessing. The first couple days I felt alone. When the doctor called with my results I was at the grocery store, my husband called me on my cell and asked if the doctor got in touch with me because the results weren't good. Thing was, I didn't even tell my husband I went for the original puch biopsy because I didn't want to worry him for nothing. I thought, I will get the biopsy, like in the past, get the negative results and clear my head. Not the case. Immediately after I hung up with my husband the doctor called and I thought I was going to pass out in the Shop Rite (lol). I went in the car and just sat there trying to wrap my head around it. Our husbands are similiar in mine hasn't expressed thoughts or concerns, I just don't think he realized how seriuos this 'could' be. He just said, well, follow up with the dermatologist and see what he says. When I express anything other than, it will be removed and be done, he tells me I am being ridiculous. So I think there is a bit of denial, or ignorance going on there. My kids….I don't plan on saying anything, no matter what the results of the surgery. I just don't want to burden them with that. My parents are out of state, I see them 4-6 times a year, so I don't plan on telling them. They are retired, on a golf course, and I just want them to be happy, enjoying life…I know they would be devasted. I will eventually tell my brother, he is a year younger then me, we are extremely close and it will be out of concern and worry for him. He is the guy that lay's in the sun without sun screen for hours. He has more of the Portguese blood in him (I am more fair-Irish) and I just want him to learn from me. My husbands family has not been told either.  Do you think I should tell them?

                                                                I am going to say you are my J3 (Jan 3) and let's keep in touch as well as stay positive. We can't change what is happening to us but we can do what we need to do and move on. Thanks for responding to me and lets keep in touch! Be well, let me know how you are making out. I have an appt with my surgeon Thursday, will let you know how it goes…..

                                                                Kelli100299
                                                                Participant

                                                                  Hey Minnesota…thanks for the smile. I haven't had one all week….Sorry we are meeting like this, but I suppose what doesn't break us makes us stronger. I like the idea of "There should be someplace where you can go shout and break things (lol)." Imagine that, we were receiving the same new's on the same day…..crazy. My children and 9 and 6, and similar to you, I put them first. Most of my heartache is imagining the future and it not being as I planned. Talking to my daughter about boys, hair, clothes, shopping, weddings etc and my son about 'how' to treat girls, soccer, baseball, college, reading his writings about how much he worships his daddy. Then I think, Kelli, you are being dramatic….so I prefer to think like you, being in a better position, until I am told otherwise.

                                                                  When you refer to the SNB, is that the dye/lymphnode surgery? I have not read up on all the acromyms and some of the medical terminology on this board is so confusing. I am impressed though with how people research everything and offer great advice. I am sure once this thing is further along, I will know many of the terms referenced.

                                                                  As for who I have told, absolutely noone, which is why you and this board is a blessing. The first couple days I felt alone. When the doctor called with my results I was at the grocery store, my husband called me on my cell and asked if the doctor got in touch with me because the results weren't good. Thing was, I didn't even tell my husband I went for the original puch biopsy because I didn't want to worry him for nothing. I thought, I will get the biopsy, like in the past, get the negative results and clear my head. Not the case. Immediately after I hung up with my husband the doctor called and I thought I was going to pass out in the Shop Rite (lol). I went in the car and just sat there trying to wrap my head around it. Our husbands are similiar in mine hasn't expressed thoughts or concerns, I just don't think he realized how seriuos this 'could' be. He just said, well, follow up with the dermatologist and see what he says. When I express anything other than, it will be removed and be done, he tells me I am being ridiculous. So I think there is a bit of denial, or ignorance going on there. My kids….I don't plan on saying anything, no matter what the results of the surgery. I just don't want to burden them with that. My parents are out of state, I see them 4-6 times a year, so I don't plan on telling them. They are retired, on a golf course, and I just want them to be happy, enjoying life…I know they would be devasted. I will eventually tell my brother, he is a year younger then me, we are extremely close and it will be out of concern and worry for him. He is the guy that lay's in the sun without sun screen for hours. He has more of the Portguese blood in him (I am more fair-Irish) and I just want him to learn from me. My husbands family has not been told either.  Do you think I should tell them?

                                                                  I am going to say you are my J3 (Jan 3) and let's keep in touch as well as stay positive. We can't change what is happening to us but we can do what we need to do and move on. Thanks for responding to me and lets keep in touch! Be well, let me know how you are making out. I have an appt with my surgeon Thursday, will let you know how it goes…..

                                                                  Minnesota
                                                                  Participant

                                                                     

                                                                    Hi again, you can be J3K and I'll be J3P (my real name is Paula). If we find any more of us, we can use numbers since dermatologists are so fond of them.

                                                                    Yes, the SNB is the sentinel lymph node biopsy thing with the dye. I didn't know that until yesterday. A sentinel is a soldier, so I sure hope ours were doing their jobs. Did you get a mitotic number? 

                                                                    I'm sorry your husband is being like mine. Mine's favorite word is ridiculous, he says it with varying disdain. It beats hearing "calm down" though. It's denial, and maybe that's better because its easier than trying to absorb everything at once. 

                                                                    I might have made a mistake by telling the few I did, so I think you approached this way better than me. Maybe you should pick at least one friend to tell who you can talk to after the sentinel node biopsy, so you don't have to explain everything, and someone who can also be with you if you have to stay in the hospital so your husband can handle anything that might come up with your son and daughter.

                                                                    If your husband's family is geographically closer to you, and you like having them around, I would tell them.

                                                                    I can't imagine hearing this news at the store – it must have been so awful to get yourself home. On Monday night, I got pannicky thinking that I was going to answer the phone, and if it was bad news, I would pass out. I handled the phone call much better than I thought I would.

                                                                    I am not nervous about the surgeon appt., and I'll let you know everything that is said so that you will know what you might hear on Thursday. It kind of bothers me that an appt. with a general surgeon was made, rather than a melanoma specialist, so the first thing I am going to find out is how many of these things she has done. I do not want to have surgery, so I am trying to convince myself that will be fine. 

                                                                    I tried to write about your kids and my kids several times in this reply, but I keep erasing everything, it's just too hard. Please know that I know exactly what you're feeling and thinking.  Hope your night has been okay, we absolutely will keep in touch 🙂

                                                                    Minnesota
                                                                    Participant

                                                                       

                                                                      Hi again, you can be J3K and I'll be J3P (my real name is Paula). If we find any more of us, we can use numbers since dermatologists are so fond of them.

                                                                      Yes, the SNB is the sentinel lymph node biopsy thing with the dye. I didn't know that until yesterday. A sentinel is a soldier, so I sure hope ours were doing their jobs. Did you get a mitotic number? 

                                                                      I'm sorry your husband is being like mine. Mine's favorite word is ridiculous, he says it with varying disdain. It beats hearing "calm down" though. It's denial, and maybe that's better because its easier than trying to absorb everything at once. 

                                                                      I might have made a mistake by telling the few I did, so I think you approached this way better than me. Maybe you should pick at least one friend to tell who you can talk to after the sentinel node biopsy, so you don't have to explain everything, and someone who can also be with you if you have to stay in the hospital so your husband can handle anything that might come up with your son and daughter.

                                                                      If your husband's family is geographically closer to you, and you like having them around, I would tell them.

                                                                      I can't imagine hearing this news at the store – it must have been so awful to get yourself home. On Monday night, I got pannicky thinking that I was going to answer the phone, and if it was bad news, I would pass out. I handled the phone call much better than I thought I would.

                                                                      I am not nervous about the surgeon appt., and I'll let you know everything that is said so that you will know what you might hear on Thursday. It kind of bothers me that an appt. with a general surgeon was made, rather than a melanoma specialist, so the first thing I am going to find out is how many of these things she has done. I do not want to have surgery, so I am trying to convince myself that will be fine. 

                                                                      I tried to write about your kids and my kids several times in this reply, but I keep erasing everything, it's just too hard. Please know that I know exactly what you're feeling and thinking.  Hope your night has been okay, we absolutely will keep in touch 🙂

                                                                      Minnesota
                                                                      Participant

                                                                         

                                                                        Hi again, you can be J3K and I'll be J3P (my real name is Paula). If we find any more of us, we can use numbers since dermatologists are so fond of them.

                                                                        Yes, the SNB is the sentinel lymph node biopsy thing with the dye. I didn't know that until yesterday. A sentinel is a soldier, so I sure hope ours were doing their jobs. Did you get a mitotic number? 

                                                                        I'm sorry your husband is being like mine. Mine's favorite word is ridiculous, he says it with varying disdain. It beats hearing "calm down" though. It's denial, and maybe that's better because its easier than trying to absorb everything at once. 

                                                                        I might have made a mistake by telling the few I did, so I think you approached this way better than me. Maybe you should pick at least one friend to tell who you can talk to after the sentinel node biopsy, so you don't have to explain everything, and someone who can also be with you if you have to stay in the hospital so your husband can handle anything that might come up with your son and daughter.

                                                                        If your husband's family is geographically closer to you, and you like having them around, I would tell them.

                                                                        I can't imagine hearing this news at the store – it must have been so awful to get yourself home. On Monday night, I got pannicky thinking that I was going to answer the phone, and if it was bad news, I would pass out. I handled the phone call much better than I thought I would.

                                                                        I am not nervous about the surgeon appt., and I'll let you know everything that is said so that you will know what you might hear on Thursday. It kind of bothers me that an appt. with a general surgeon was made, rather than a melanoma specialist, so the first thing I am going to find out is how many of these things she has done. I do not want to have surgery, so I am trying to convince myself that will be fine. 

                                                                        I tried to write about your kids and my kids several times in this reply, but I keep erasing everything, it's just too hard. Please know that I know exactly what you're feeling and thinking.  Hope your night has been okay, we absolutely will keep in touch 🙂

                                                                        Kelli100299
                                                                        Participant

                                                                          Hey J3P (Paula) – How’s your Saturday going? Mine, so far so good. I took my daughter to get her hair cut this morning. She has been harassing us for the past 8 months about donating her hair to Locks of Love. My husband didn’t want her hair short, so I talked her into keeping it through cheerleading because she would need to put it up for competitions. That ended in last October, so she was told (by my husband) that she had to keep it long for the holidays. She unhappily agreed. So once the New Year started that was the first thing on her mind. My attitude was always let her express herself. If she wants short hair, so be it, it will always grow back…..So, we just got back from mailing off her pony tail, cute kid!  She is so proud, and is out now showing all her friends. Of course, as I was sitting watching her get her hair cut, and watching my little baby transform to a little girl, I wondered how many more moments I would have like that. I know….normal thoughts.

                                                                          I am not nervous about seeing the surgeon either. I actually am looking forward to it. I want to get whatever done, and past me. He has gotten really good reviews so my hope is that I am not disappointed. I was in Minnesota (Minneapolis) last year. I am sure if you don’t like what you hear at your appointment or aren’t comfortable, you have many options. Let me know how it goes and we will talk soon. Hope you are enjoying the weekend!

                                                                          Kelli

                                                                          Kelli100299
                                                                          Participant

                                                                            Hey J3P (Paula) – How’s your Saturday going? Mine, so far so good. I took my daughter to get her hair cut this morning. She has been harassing us for the past 8 months about donating her hair to Locks of Love. My husband didn’t want her hair short, so I talked her into keeping it through cheerleading because she would need to put it up for competitions. That ended in last October, so she was told (by my husband) that she had to keep it long for the holidays. She unhappily agreed. So once the New Year started that was the first thing on her mind. My attitude was always let her express herself. If she wants short hair, so be it, it will always grow back…..So, we just got back from mailing off her pony tail, cute kid!  She is so proud, and is out now showing all her friends. Of course, as I was sitting watching her get her hair cut, and watching my little baby transform to a little girl, I wondered how many more moments I would have like that. I know….normal thoughts.

                                                                            I am not nervous about seeing the surgeon either. I actually am looking forward to it. I want to get whatever done, and past me. He has gotten really good reviews so my hope is that I am not disappointed. I was in Minnesota (Minneapolis) last year. I am sure if you don’t like what you hear at your appointment or aren’t comfortable, you have many options. Let me know how it goes and we will talk soon. Hope you are enjoying the weekend!

                                                                            Kelli

                                                                            Kelli100299
                                                                            Participant

                                                                              Hey J3P (Paula) – How’s your Saturday going? Mine, so far so good. I took my daughter to get her hair cut this morning. She has been harassing us for the past 8 months about donating her hair to Locks of Love. My husband didn’t want her hair short, so I talked her into keeping it through cheerleading because she would need to put it up for competitions. That ended in last October, so she was told (by my husband) that she had to keep it long for the holidays. She unhappily agreed. So once the New Year started that was the first thing on her mind. My attitude was always let her express herself. If she wants short hair, so be it, it will always grow back…..So, we just got back from mailing off her pony tail, cute kid!  She is so proud, and is out now showing all her friends. Of course, as I was sitting watching her get her hair cut, and watching my little baby transform to a little girl, I wondered how many more moments I would have like that. I know….normal thoughts.

                                                                              I am not nervous about seeing the surgeon either. I actually am looking forward to it. I want to get whatever done, and past me. He has gotten really good reviews so my hope is that I am not disappointed. I was in Minnesota (Minneapolis) last year. I am sure if you don’t like what you hear at your appointment or aren’t comfortable, you have many options. Let me know how it goes and we will talk soon. Hope you are enjoying the weekend!

                                                                              Kelli

                                                                              Kelli100299
                                                                              Participant

                                                                                Hey Minnesota…thanks for the smile. I haven't had one all week….Sorry we are meeting like this, but I suppose what doesn't break us makes us stronger. I like the idea of "There should be someplace where you can go shout and break things (lol)." Imagine that, we were receiving the same new's on the same day…..crazy. My children and 9 and 6, and similar to you, I put them first. Most of my heartache is imagining the future and it not being as I planned. Talking to my daughter about boys, hair, clothes, shopping, weddings etc and my son about 'how' to treat girls, soccer, baseball, college, reading his writings about how much he worships his daddy. Then I think, Kelli, you are being dramatic….so I prefer to think like you, being in a better position, until I am told otherwise.

                                                                                When you refer to the SNB, is that the dye/lymphnode surgery? I have not read up on all the acromyms and some of the medical terminology on this board is so confusing. I am impressed though with how people research everything and offer great advice. I am sure once this thing is further along, I will know many of the terms referenced.

                                                                                As for who I have told, absolutely noone, which is why you and this board is a blessing. The first couple days I felt alone. When the doctor called with my results I was at the grocery store, my husband called me on my cell and asked if the doctor got in touch with me because the results weren't good. Thing was, I didn't even tell my husband I went for the original puch biopsy because I didn't want to worry him for nothing. I thought, I will get the biopsy, like in the past, get the negative results and clear my head. Not the case. Immediately after I hung up with my husband the doctor called and I thought I was going to pass out in the Shop Rite (lol). I went in the car and just sat there trying to wrap my head around it. Our husbands are similiar in mine hasn't expressed thoughts or concerns, I just don't think he realized how seriuos this 'could' be. He just said, well, follow up with the dermatologist and see what he says. When I express anything other than, it will be removed and be done, he tells me I am being ridiculous. So I think there is a bit of denial, or ignorance going on there. My kids….I don't plan on saying anything, no matter what the results of the surgery. I just don't want to burden them with that. My parents are out of state, I see them 4-6 times a year, so I don't plan on telling them. They are retired, on a golf course, and I just want them to be happy, enjoying life…I know they would be devasted. I will eventually tell my brother, he is a year younger then me, we are extremely close and it will be out of concern and worry for him. He is the guy that lay's in the sun without sun screen for hours. He has more of the Portguese blood in him (I am more fair-Irish) and I just want him to learn from me. My husbands family has not been told either.  Do you think I should tell them?

                                                                                I am going to say you are my J3 (Jan 3) and let's keep in touch as well as stay positive. We can't change what is happening to us but we can do what we need to do and move on. Thanks for responding to me and lets keep in touch! Be well, let me know how you are making out. I have an appt with my surgeon Thursday, will let you know how it goes…..

                                                                                soonerjenn14
                                                                                Participant
                                                                                  Hi Kelli100299,

                                                                                  I, too, was in the grocery store when I got my call. It was almost surreal, standing there getting bad news while the rest of the shoppers were just doing their shopping. Unfortunately for me, when I met with the surgical oncologist for my SNB and wide excision consultation, they found an already enlarged lymph node so I was sent straight to a medical oncologist. PET scan revealed possible mets on bones and liver, so I was diagnosed as stage 4 and started immunotherapy (Opdivo) straight away. I did great for about 9 months; the bone mets have never shown up on any of my subsequent CT scans and my lymph node shrank by half. The spot on my liver is still questionable…we’ve done an MRI which was inconclusive so I have a liver biopsy scheduled later this month for further analysis. However, New Year’s weekend I felt the node and it felt bigger again. I notified my doctor and we scheduled a scan, which showed it has doubled in size again. 🙁 I was devastated after doing so well. They started me on the Opdivo/Yervoy combo last week and we’ll see what comes of it.

                                                                                  I’m not telling you my story to cause you further worry or concern, I just found it ironic that we were both in the grocery store when we got our calls. The main thing is not to give up hope, because melanoma is far more treatable than it was 10-12 years ago and it is NOT a death sentence so get that out of your head. The surgical oncologist told me “immunotherapy, immunotherapy, immunotherapy” before he transferred me. And it does work! Best wishes to you and Minnesota and please keep us posted on your situations. We are all in this together!!

                                                                                  ed williams
                                                                                  Participant
                                                                                    Hi Soonerjenn, this post is from 2012, so not sure why it came up but none of the posters are currently active on MRF so I don’t think you will get a reply!!! Part of the fun of the new and improved site features!!! Ed
                                                                                    soonerjenn14
                                                                                    Participant
                                                                                      Haha, thanks Ed! I didn’t even notice the date…hope both of these ladies fared well!
                                                                                      Minnesota
                                                                                      Participant

                                                                                        Hi, I am so sorry you are having the same nightmare week as I am. How old are your kids? I have 4 kids and am married too. My youngest is 11. 

                                                                                        I kind of knew something was up by the way the dermatologist acted when I went in with the mole I had, so waiting from December 16 to January 3 seemed like a lifetime. I've probably seen 30+ dermatologists in the last 11 years, so nothing surprises me about how they act. One thing I learned is that doctors are trained to look for the most common thing, so if "most" people only have one melanoma site, their mind would tell them that they aren't going to see another. That's probably why he didn't use the light and the previous doctors did (because at that time they were looking for "the one"). I was told that I needed to come in every 3 months for a full body scan, and I haven't had one, so I said, "why aren't we checking now?" My doctor said, "we could if you want to, but the odds of finding another site are almost zero right now."  

                                                                                        I still haven't received my pathology report. My doctor said that he was sending it on Tuesday, and it doesn't take 3 days for it to travel 9 miles. If I wasn't such a wreck, I would drive to the office and stand there until they made a copy. I feel like they purposely waited until after the holidays to tell me, and now aren't sending me the report.. but I know that's not true – its really about the stupid paperwork and dealing with it, and the day getting too long after a boatload of patients.

                                                                                        My hope is that there are maybe lots of people who were in the same position as you and I, and then went through the SNB, did what they had to do, and then put this behind them. I am not sure we are seeing the whole picture, especially online. With my autoimmune disease, most go into remission at about 9 mos. post-partum, but I am at 11 years without a remission. If I would have recovered normally, I wouldn't have started a group, and I wouldn't have stuck with it. Even now, I have to be very careful with the new people because I don't want them to think that they will be like me, because the odds are that they won't. At the same time, most want to put me in a box to make me so different to explain why it can't happen to them.  In too many words, I am saying that I think we are in a better position than it appears right now.

                                                                                        I feel a lot better today about everything. I don't know who you've told, but we gave an abbreviated version to our two younger kids, a better explanation to the older kids, and my mom and 3 of my friends know. I told them that we have to wait for the SNB, and even if that's not good, it might have just stopped there, and even if it hasn't, then we'll just deal with what comes after that, but right now, that's as far as anyone is going to think. I don't know what is going on in my husband's mind, he refused to even discuss the biopsy, and at that point, I had no one else to talk to. He only says that he can't believe this, its impossible. I can tell he's been crying because his eyelids are purple. I feel like I've had to turn into some stepford version of myself to make everyone around me feel better. There should be someplace where you can go shout and break things (lol).

                                                                                        So, lets just say that the January 3rd club of two (so far) is going to be okay. We're going to have to do some stuff that sounds awful, but we'll get through it and look back and say it wasn't as bad as it sounded.

                                                                                      Minnesota
                                                                                      Participant

                                                                                        This is a separate post with my pathology numbers (J3K, I'll write more later – that is so sweet about your daughter, it made me cry)

                                                                                        First, my results were faxed to my clinic on 12-23-11, and I wasn't told until 1-3-12. If they were sparing me bad news over the holidays, shame on them. I might have had the surgery behind me now.

                                                                                        (Lab: Mayo Clinic)

                                                                                        Malignant melanoma without ulceration.

                                                                                        Clark's level IV

                                                                                        Breslow thickness 1.45 mm

                                                                                        Mitotic rate is 5/mm2 

                                                                                        Histogenetic type is superficial spreading.

                                                                                        Radial growth phase is present.

                                                                                        Vertical growth phase is present.

                                                                                        Tumor cell morphology is epithelioid.

                                                                                        Regression is absent.

                                                                                        Tumor infiltrating lymphocytes are brisk.

                                                                                        Microscopic satellites are absent.

                                                                                        Neurotropism is absent.

                                                                                        Angiolymphatic invasion is absent.

                                                                                        Tumor cells are immunoreactive for Melan-A. The tumor extends to within 1.2 mm of the nearest lateral margin. Complete re-excision with appropriate surgical margins recommended.

                                                                                        ________________

                                                                                        I appreciate any comments, good or bad – thanks!

                                                                                          Janner
                                                                                          Participant

                                                                                            This is a basic stage IB lesion.  As discussed before, ideally you would have a mitotic rate of 0.  But other than that, the other components would be low risk and exactly what you'd want to see. 

                                                                                            Good luck on your WLE/SNB and let us know how it turns out.

                                                                                            Best wishes,

                                                                                            Janner

                                                                                            Minnesota
                                                                                            Participant

                                                                                              Thanks Janner, the derm called it a T2a, would that translate to 1B too?

                                                                                              This may be way off base, but if the mitotic thing has anything to do with neutrophils, I have had off the chart neutrophil involvment on every previous biopsy for my autoimmune blistering disease, which is common for that.  I can hope that it's high because of that for now.

                                                                                              I feel better after you looked at this, thanks again. 

                                                                                              Janner
                                                                                              Participant

                                                                                                T2aN0M0 is stage IB.

                                                                                                http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/dermatology/cutaneous-malignant-melanoma/#s0110

                                                                                                I do not know enough about the cellular division lifecycle to know if and how your nigh neutophil count may play into things.  Certainly something you could bring up with your doctor.

                                                                                                Janner

                                                                                                Janner
                                                                                                Participant

                                                                                                  Sorry, I didn't realize the link above was from the old staging system.  It doesn't change anything for your stage, however.  Here's a link that discusses the newer staging system guidelines.

                                                                                                  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793035/

                                                                                                  Janner
                                                                                                  Participant

                                                                                                    Sorry, I didn't realize the link above was from the old staging system.  It doesn't change anything for your stage, however.  Here's a link that discusses the newer staging system guidelines.

                                                                                                    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793035/

                                                                                                    Minnesota
                                                                                                    Participant

                                                                                                      Thanks, it's starting to make more sense to me now. I am just hoping that my mitotic rate is more about that than what it says it is about online.

                                                                                                      Hope you are having a good weekend – this newbie sure appreciates your responses!

                                                                                                      Minnesota
                                                                                                      Participant

                                                                                                        Thanks, it's starting to make more sense to me now. I am just hoping that my mitotic rate is more about that than what it says it is about online.

                                                                                                        Hope you are having a good weekend – this newbie sure appreciates your responses!

                                                                                                        Minnesota
                                                                                                        Participant

                                                                                                          Thanks, it's starting to make more sense to me now. I am just hoping that my mitotic rate is more about that than what it says it is about online.

                                                                                                          Hope you are having a good weekend – this newbie sure appreciates your responses!

                                                                                                          Janner
                                                                                                          Participant

                                                                                                            Sorry, I didn't realize the link above was from the old staging system.  It doesn't change anything for your stage, however.  Here's a link that discusses the newer staging system guidelines.

                                                                                                            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793035/

                                                                                                            Janner
                                                                                                            Participant

                                                                                                              T2aN0M0 is stage IB.

                                                                                                              http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/dermatology/cutaneous-malignant-melanoma/#s0110

                                                                                                              I do not know enough about the cellular division lifecycle to know if and how your nigh neutophil count may play into things.  Certainly something you could bring up with your doctor.

                                                                                                              Janner

                                                                                                              Janner
                                                                                                              Participant

                                                                                                                T2aN0M0 is stage IB.

                                                                                                                http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/dermatology/cutaneous-malignant-melanoma/#s0110

                                                                                                                I do not know enough about the cellular division lifecycle to know if and how your nigh neutophil count may play into things.  Certainly something you could bring up with your doctor.

                                                                                                                Janner

                                                                                                                Minnesota
                                                                                                                Participant

                                                                                                                  Thanks Janner, the derm called it a T2a, would that translate to 1B too?

                                                                                                                  This may be way off base, but if the mitotic thing has anything to do with neutrophils, I have had off the chart neutrophil involvment on every previous biopsy for my autoimmune blistering disease, which is common for that.  I can hope that it's high because of that for now.

                                                                                                                  I feel better after you looked at this, thanks again. 

                                                                                                                  Minnesota
                                                                                                                  Participant

                                                                                                                    Thanks Janner, the derm called it a T2a, would that translate to 1B too?

                                                                                                                    This may be way off base, but if the mitotic thing has anything to do with neutrophils, I have had off the chart neutrophil involvment on every previous biopsy for my autoimmune blistering disease, which is common for that.  I can hope that it's high because of that for now.

                                                                                                                    I feel better after you looked at this, thanks again. 

                                                                                                                    Janner
                                                                                                                    Participant

                                                                                                                      This is a basic stage IB lesion.  As discussed before, ideally you would have a mitotic rate of 0.  But other than that, the other components would be low risk and exactly what you'd want to see. 

                                                                                                                      Good luck on your WLE/SNB and let us know how it turns out.

                                                                                                                      Best wishes,

                                                                                                                      Janner

                                                                                                                      Janner
                                                                                                                      Participant

                                                                                                                        This is a basic stage IB lesion.  As discussed before, ideally you would have a mitotic rate of 0.  But other than that, the other components would be low risk and exactly what you'd want to see. 

                                                                                                                        Good luck on your WLE/SNB and let us know how it turns out.

                                                                                                                        Best wishes,

                                                                                                                        Janner

                                                                                                                        Kelli100299
                                                                                                                        Participant

                                                                                                                          Hi J3P – Your results and mine are very similar, other than a few word changes here and there, probably just the different clinics that produced the results. From what I have read on responses, they are very positive and I hope it makes you feel better about it. I know when I posted mine and people wrote that it's somewhat normal and to not worry to much, it did make me feel better. I don't know enough about all this yet to make suggestions about where you are at medically, however, based on all our friends responses, it's easier to remain positive..I am hoping you feel the same.

                                                                                                                          Kelli

                                                                                                                          Kelli100299
                                                                                                                          Participant

                                                                                                                            Hi J3P – Your results and mine are very similar, other than a few word changes here and there, probably just the different clinics that produced the results. From what I have read on responses, they are very positive and I hope it makes you feel better about it. I know when I posted mine and people wrote that it's somewhat normal and to not worry to much, it did make me feel better. I don't know enough about all this yet to make suggestions about where you are at medically, however, based on all our friends responses, it's easier to remain positive..I am hoping you feel the same.

                                                                                                                            Kelli

                                                                                                                            Minnesota
                                                                                                                            Participant

                                                                                                                              Hi – you are right, and the decoding and explanations here sure help too.

                                                                                                                              I don't like my 5 number, and the word brisk. I am glad you don't have either of those. I am not entirely sure, but it sounds like your biopsy was different that mine. I had an excision, which was a little bigger than a quarter, and then stitched around the circle and pulled tight to keep the center open for "future" surgery (ugh), which is now all but healed since they waiting so (%$#^) long to get my results to me. Maybe it doesn't matter, if he had simply told me like Janner did that he needed to preserve a "path" to my lymph nodes, just in case, that would have made more sense.

                                                                                                                              What is bugging me (still) is that my dermatologist gave me the impression that they were going to find it in my lymph nodes because of that 5, so I am hoping that my autoimmune skin problem is the cause. 

                                                                                                                              This is a strange world where parts of a millimeter are significant, while we've all heard stories about cancer the size of fruit being taken out of people who are now fine. 

                                                                                                                              How are you feeling health-wise? Before I found out, I would have said that I was the best I was in years (putting the autoimmune stuff aside). Since June, I have lost 22 lbs. from walking 2-3 miles a day, so I was feeling proud of myself for that (weight gain from corticosteroids over 11 years, which I am no longer taking). Its going to make me mad if people think I lost weight because of cancer because I've worked to hard to get it off the right way lol. Now I have terrible pain in my rib cage, groin and thumb, as well as having a constant headache – I'm sure it's from the stress.  I just want to delete the past week from my mind. 

                                                                                                                              I don't know if you're at work, but if you are, I hope you are doing okay. I am trying to be positive, it probably doesn't sound like it, but I really am, and thank you for being my new friend too.

                                                                                                                              Janner
                                                                                                                              Participant

                                                                                                                                TIL showing "Brisk" is actually what you'd like to see.  And with your auto-immune issues, probably expected.  It just means the body is "checking out the lesion".  Since people with auto-immune diseases have hyper immune responses, it makes sense.  There have been studies showing brisk is "good" and others saying maybe not.  But to date, even with all their studies, TIL has no statistically proven value for prognosis.  And if "5" were so important and an indication of spread, it would be considered of higher value than the Breslow depth for prognosis.  It's not.  The depth is by far the more consistent and telling factor.  Up until the end of 2009, mitosis wasn't even a part of the staging process.  So making any assumption based on mitosis alone doesn't have a long history.  It's just another part of the picture.

                                                                                                                                I wouldn't spend a lot of time worrying about everything in the pathology report.  Hard not to do, I know.  But it is all moot when you get the results of the SNB.  That has now become the next important step.  There is either spread or not.  And all the analysis in the world won't tell you if your lesion is one of the unlucky ones. 

                                                                                                                                BTW, you had an excisional biopsy.  The other newbie poster had a punch biopsy, I believe.  Much smaller defect with a punch – usually requiring only a stitch or two.  Also, while waiting sucks, the surgery need only be performed within 90 days.  It's hard to wait for stuff, but the waiting hasn't really shown to be a problem prognosis-wise.  Mentally, it's a different story!

                                                                                                                                Minnesota
                                                                                                                                Participant

                                                                                                                                  I really owe you one, I feel so much less anxious after I read this. I have my surgeon meeting appt. in a few hours now, I will be happy to be done with that and knowing when they are going to do the SNB. From what I can understand, the reason I was referred to this surgeon is because she does a lot of SNB for breast cancer patients – does that make sense to you?

                                                                                                                                  I talked to one of my childhood friends last night. I knew she had skin cancer, so I had called her after my biopsy. She doesn't seem to keep on top of any of it (but goes to all her appts.), anyway, I knew she had told me she had melanoma in 2006 so before I knew the results I thought, "she seems fine, so its going to be okay even if it is melanoma."  Then after talking to her a few weeks ago, she was reading some of her latest lab work and it was basal cell, and she said she thought she also had squamous cell. It was frustrating for me as then I wished I hadn't said anything to her, mostly because she was alarmed that an excision had been done to begin with, and she's never had a SNB, so she was acting as though my doctor was being extreme.

                                                                                                                                  Last night, she was looking through her records and the first was a SSM, .90mm on her forearm. Then a few years later, they found a .34mm on her other forearm, and last year they found a .34mm on her back, and along the way they keep finding basal and squamous (sorry if I am not spelling that right).  

                                                                                                                                  That sounded a little like what you've been going through, so I was wondering – on the people who have more than one, are they each primaries, or do the later found ones come from the original primary? 

                                                                                                                                  Thanks again Janner, I am trying to learn the meaning of one day/minute/second at a time.

                                                                                                                                  Minnesota
                                                                                                                                  Participant

                                                                                                                                    I really owe you one, I feel so much less anxious after I read this. I have my surgeon meeting appt. in a few hours now, I will be happy to be done with that and knowing when they are going to do the SNB. From what I can understand, the reason I was referred to this surgeon is because she does a lot of SNB for breast cancer patients – does that make sense to you?

                                                                                                                                    I talked to one of my childhood friends last night. I knew she had skin cancer, so I had called her after my biopsy. She doesn't seem to keep on top of any of it (but goes to all her appts.), anyway, I knew she had told me she had melanoma in 2006 so before I knew the results I thought, "she seems fine, so its going to be okay even if it is melanoma."  Then after talking to her a few weeks ago, she was reading some of her latest lab work and it was basal cell, and she said she thought she also had squamous cell. It was frustrating for me as then I wished I hadn't said anything to her, mostly because she was alarmed that an excision had been done to begin with, and she's never had a SNB, so she was acting as though my doctor was being extreme.

                                                                                                                                    Last night, she was looking through her records and the first was a SSM, .90mm on her forearm. Then a few years later, they found a .34mm on her other forearm, and last year they found a .34mm on her back, and along the way they keep finding basal and squamous (sorry if I am not spelling that right).  

                                                                                                                                    That sounded a little like what you've been going through, so I was wondering – on the people who have more than one, are they each primaries, or do the later found ones come from the original primary? 

                                                                                                                                    Thanks again Janner, I am trying to learn the meaning of one day/minute/second at a time.

                                                                                                                                    Minnesota
                                                                                                                                    Participant

                                                                                                                                      I really owe you one, I feel so much less anxious after I read this. I have my surgeon meeting appt. in a few hours now, I will be happy to be done with that and knowing when they are going to do the SNB. From what I can understand, the reason I was referred to this surgeon is because she does a lot of SNB for breast cancer patients – does that make sense to you?

                                                                                                                                      I talked to one of my childhood friends last night. I knew she had skin cancer, so I had called her after my biopsy. She doesn't seem to keep on top of any of it (but goes to all her appts.), anyway, I knew she had told me she had melanoma in 2006 so before I knew the results I thought, "she seems fine, so its going to be okay even if it is melanoma."  Then after talking to her a few weeks ago, she was reading some of her latest lab work and it was basal cell, and she said she thought she also had squamous cell. It was frustrating for me as then I wished I hadn't said anything to her, mostly because she was alarmed that an excision had been done to begin with, and she's never had a SNB, so she was acting as though my doctor was being extreme.

                                                                                                                                      Last night, she was looking through her records and the first was a SSM, .90mm on her forearm. Then a few years later, they found a .34mm on her other forearm, and last year they found a .34mm on her back, and along the way they keep finding basal and squamous (sorry if I am not spelling that right).  

                                                                                                                                      That sounded a little like what you've been going through, so I was wondering – on the people who have more than one, are they each primaries, or do the later found ones come from the original primary? 

                                                                                                                                      Thanks again Janner, I am trying to learn the meaning of one day/minute/second at a time.

                                                                                                                                      Janner
                                                                                                                                      Participant

                                                                                                                                        The SNB is used for breast cancer more than any other cancer.  So seeing a breast cancer surgeon makes sense for the SNB.  The general cutoff for doing the SNB is 1mm.  Some lesions are higher risk than others and so a SNB may be done for smaller lesions if other factors warrant it.  Since your friends first lesion was less than 1mm, it is understandable that she may not have had a SNB for that lesion as it was under 1mm (as were the rest of hers).  The SNB has been around for about 15 years now so people diagnosed prior to that wouldn't have a SNB either.

                                                                                                                                        If each lesion has a depth, i.e. .90mm, .34mm, etc., it is a new primary and it is totally a new occurrence and unrelated to any other melanomas.  The pathology report wouldn't give a depth otherwise, it would say it is a metastatic lesion.  In the very most simplest terms, a new primary grows from the top of the skin down.  A metastatic lesion grows from the base of the skin up. 

                                                                                                                                        You may see people here post their NED anniversaries.  This means no evidence of disease.  I literally celebrate 3 NED dates because each of my 3 primaries is independent from the other.  Coming up on 20 years from #1 in a couple of months.

                                                                                                                                        Janner

                                                                                                                                        Janner
                                                                                                                                        Participant

                                                                                                                                          The SNB is used for breast cancer more than any other cancer.  So seeing a breast cancer surgeon makes sense for the SNB.  The general cutoff for doing the SNB is 1mm.  Some lesions are higher risk than others and so a SNB may be done for smaller lesions if other factors warrant it.  Since your friends first lesion was less than 1mm, it is understandable that she may not have had a SNB for that lesion as it was under 1mm (as were the rest of hers).  The SNB has been around for about 15 years now so people diagnosed prior to that wouldn't have a SNB either.

                                                                                                                                          If each lesion has a depth, i.e. .90mm, .34mm, etc., it is a new primary and it is totally a new occurrence and unrelated to any other melanomas.  The pathology report wouldn't give a depth otherwise, it would say it is a metastatic lesion.  In the very most simplest terms, a new primary grows from the top of the skin down.  A metastatic lesion grows from the base of the skin up. 

                                                                                                                                          You may see people here post their NED anniversaries.  This means no evidence of disease.  I literally celebrate 3 NED dates because each of my 3 primaries is independent from the other.  Coming up on 20 years from #1 in a couple of months.

                                                                                                                                          Janner

                                                                                                                                          Janner
                                                                                                                                          Participant

                                                                                                                                            The SNB is used for breast cancer more than any other cancer.  So seeing a breast cancer surgeon makes sense for the SNB.  The general cutoff for doing the SNB is 1mm.  Some lesions are higher risk than others and so a SNB may be done for smaller lesions if other factors warrant it.  Since your friends first lesion was less than 1mm, it is understandable that she may not have had a SNB for that lesion as it was under 1mm (as were the rest of hers).  The SNB has been around for about 15 years now so people diagnosed prior to that wouldn't have a SNB either.

                                                                                                                                            If each lesion has a depth, i.e. .90mm, .34mm, etc., it is a new primary and it is totally a new occurrence and unrelated to any other melanomas.  The pathology report wouldn't give a depth otherwise, it would say it is a metastatic lesion.  In the very most simplest terms, a new primary grows from the top of the skin down.  A metastatic lesion grows from the base of the skin up. 

                                                                                                                                            You may see people here post their NED anniversaries.  This means no evidence of disease.  I literally celebrate 3 NED dates because each of my 3 primaries is independent from the other.  Coming up on 20 years from #1 in a couple of months.

                                                                                                                                            Janner

                                                                                                                                            Kelli100299
                                                                                                                                            Participant

                                                                                                                                              Janner….

                                                                                                                                              20 years…that is awesome! You have a lot of information and advice, love reading your positive posts. Thanks!

                                                                                                                                              Kelli

                                                                                                                                              Kelli100299
                                                                                                                                              Participant

                                                                                                                                                Janner….

                                                                                                                                                20 years…that is awesome! You have a lot of information and advice, love reading your positive posts. Thanks!

                                                                                                                                                Kelli

                                                                                                                                                Kelli100299
                                                                                                                                                Participant

                                                                                                                                                  Janner….

                                                                                                                                                  20 years…that is awesome! You have a lot of information and advice, love reading your positive posts. Thanks!

                                                                                                                                                  Kelli

                                                                                                                                                  Minnesota
                                                                                                                                                  Participant

                                                                                                                                                    Wow, going through that 3 times – I can't wrap my head around it, but so thankful you are here, doing well, and so inspirational and helpful to us. Now you need a 20+ year NED anniversary.

                                                                                                                                                    Thanks for explaining about each instance with my friend. So, melanoma is rare, and then inside that, having a second primary is very rare, and both of you have had 3. It's yet another thing that is baffling to me. My friend and I were born the same day at the same time, but in different hospitals.. and here we both have melanoma.  I am going to give her the information you wrote (thanks again x's 100). She will forget it tomorrow lol – I wish I could be more like her and let all this roll off me.

                                                                                                                                                    I had my surgeon appt. today, and I will write about that next.

                                                                                                                                                    Minnesota
                                                                                                                                                    Participant

                                                                                                                                                      Wow, going through that 3 times – I can't wrap my head around it, but so thankful you are here, doing well, and so inspirational and helpful to us. Now you need a 20+ year NED anniversary.

                                                                                                                                                      Thanks for explaining about each instance with my friend. So, melanoma is rare, and then inside that, having a second primary is very rare, and both of you have had 3. It's yet another thing that is baffling to me. My friend and I were born the same day at the same time, but in different hospitals.. and here we both have melanoma.  I am going to give her the information you wrote (thanks again x's 100). She will forget it tomorrow lol – I wish I could be more like her and let all this roll off me.

                                                                                                                                                      I had my surgeon appt. today, and I will write about that next.

                                                                                                                                                      Minnesota
                                                                                                                                                      Participant

                                                                                                                                                        Wow, going through that 3 times – I can't wrap my head around it, but so thankful you are here, doing well, and so inspirational and helpful to us. Now you need a 20+ year NED anniversary.

                                                                                                                                                        Thanks for explaining about each instance with my friend. So, melanoma is rare, and then inside that, having a second primary is very rare, and both of you have had 3. It's yet another thing that is baffling to me. My friend and I were born the same day at the same time, but in different hospitals.. and here we both have melanoma.  I am going to give her the information you wrote (thanks again x's 100). She will forget it tomorrow lol – I wish I could be more like her and let all this roll off me.

                                                                                                                                                        I had my surgeon appt. today, and I will write about that next.

                                                                                                                                                        Kelli100299
                                                                                                                                                        Participant

                                                                                                                                                          Hi J3P..how's your day…any word? As stated by Janner, I only had a punch, to determine if the mole was melanoma. I have not had the SNB yet. I have an appointment with the Melanoma Specialist on Thursday and according to the dermatologist the SNB and Excision will be the next recommendation. I know the waiting is hard, but try to remain positive. Keep talking!

                                                                                                                                                          Kelli

                                                                                                                                                          Kelli100299
                                                                                                                                                          Participant

                                                                                                                                                            Hi J3P..how's your day…any word? As stated by Janner, I only had a punch, to determine if the mole was melanoma. I have not had the SNB yet. I have an appointment with the Melanoma Specialist on Thursday and according to the dermatologist the SNB and Excision will be the next recommendation. I know the waiting is hard, but try to remain positive. Keep talking!

                                                                                                                                                            Kelli

                                                                                                                                                            Kelli100299
                                                                                                                                                            Participant

                                                                                                                                                              Hi J3P..how's your day…any word? As stated by Janner, I only had a punch, to determine if the mole was melanoma. I have not had the SNB yet. I have an appointment with the Melanoma Specialist on Thursday and according to the dermatologist the SNB and Excision will be the next recommendation. I know the waiting is hard, but try to remain positive. Keep talking!

                                                                                                                                                              Kelli

                                                                                                                                                              Minnesota
                                                                                                                                                              Participant

                                                                                                                                                                Hi to you J3K,

                                                                                                                                                                I met the surgeon today and I really liked her. She is around my age. My surgery is Thursday January 19th. I have to be at the hospital at 7 am (and they said the hospital might change it to 6 am), and the actual surgery is at 10:30 am. I guess it takes that long to do imaging and the dye thing. She is also going to do the excision (not something she usually does, but she does SNB every week). She said my pathology report said I had clear margins from the excision I had, but they weren't wide enough for melanoma. Of course my dermatologist's office hadn't sent any of my information over, but I had brought my pathology report and other records.

                                                                                                                                                                One thing I was so relieved about is that she will do it without putting me under general anesthesia because of my autoimmune situation. Sounded like they will use versed and fentanyl, which I had for an upper endoscopy before (and didn't work, but at least I didn't have a reaction to either). 

                                                                                                                                                                After that's over, I need to get an oncologist. I told her that the melanoma information sites recommend getting a melanoma specialist and she said we didn't have any in Minnesota became melanoma is rare. I think we have doctors at the University of Minnesota and Mayo Clinic that might not call themselves melanoma specialists, but see a lot of melanoma patients, so I will have to figure that out after I get this surgery done.

                                                                                                                                                                I scared a nurse there, the thing that goes on the finger that registers oxygen levels wouldn't go over 75 and she kept trying other fingers and was getting anxious. I have this other stupid autoimmune thing called Raynaud's that causes that, and then I told the doctor and she knew right away about that condition. It was nice to have someone back me up, rather than being looked at like I was on the verge of collapse.

                                                                                                                                                                So that's my story for today. I hope you are doing okay. I think about you all the time and hope and pray that we're both going to get some good news about our lymph nodes. My husband came with me to the appointment today and has been downright cheerful since we left. I don't know what's up with that, but it's better than what he was acting like.  Hugs to you – Paula

                                                                                                                                                                Minnesota
                                                                                                                                                                Participant

                                                                                                                                                                  Hi to you J3K,

                                                                                                                                                                  I met the surgeon today and I really liked her. She is around my age. My surgery is Thursday January 19th. I have to be at the hospital at 7 am (and they said the hospital might change it to 6 am), and the actual surgery is at 10:30 am. I guess it takes that long to do imaging and the dye thing. She is also going to do the excision (not something she usually does, but she does SNB every week). She said my pathology report said I had clear margins from the excision I had, but they weren't wide enough for melanoma. Of course my dermatologist's office hadn't sent any of my information over, but I had brought my pathology report and other records.

                                                                                                                                                                  One thing I was so relieved about is that she will do it without putting me under general anesthesia because of my autoimmune situation. Sounded like they will use versed and fentanyl, which I had for an upper endoscopy before (and didn't work, but at least I didn't have a reaction to either). 

                                                                                                                                                                  After that's over, I need to get an oncologist. I told her that the melanoma information sites recommend getting a melanoma specialist and she said we didn't have any in Minnesota became melanoma is rare. I think we have doctors at the University of Minnesota and Mayo Clinic that might not call themselves melanoma specialists, but see a lot of melanoma patients, so I will have to figure that out after I get this surgery done.

                                                                                                                                                                  I scared a nurse there, the thing that goes on the finger that registers oxygen levels wouldn't go over 75 and she kept trying other fingers and was getting anxious. I have this other stupid autoimmune thing called Raynaud's that causes that, and then I told the doctor and she knew right away about that condition. It was nice to have someone back me up, rather than being looked at like I was on the verge of collapse.

                                                                                                                                                                  So that's my story for today. I hope you are doing okay. I think about you all the time and hope and pray that we're both going to get some good news about our lymph nodes. My husband came with me to the appointment today and has been downright cheerful since we left. I don't know what's up with that, but it's better than what he was acting like.  Hugs to you – Paula

                                                                                                                                                                  Minnesota
                                                                                                                                                                  Participant

                                                                                                                                                                    Hi to you J3K,

                                                                                                                                                                    I met the surgeon today and I really liked her. She is around my age. My surgery is Thursday January 19th. I have to be at the hospital at 7 am (and they said the hospital might change it to 6 am), and the actual surgery is at 10:30 am. I guess it takes that long to do imaging and the dye thing. She is also going to do the excision (not something she usually does, but she does SNB every week). She said my pathology report said I had clear margins from the excision I had, but they weren't wide enough for melanoma. Of course my dermatologist's office hadn't sent any of my information over, but I had brought my pathology report and other records.

                                                                                                                                                                    One thing I was so relieved about is that she will do it without putting me under general anesthesia because of my autoimmune situation. Sounded like they will use versed and fentanyl, which I had for an upper endoscopy before (and didn't work, but at least I didn't have a reaction to either). 

                                                                                                                                                                    After that's over, I need to get an oncologist. I told her that the melanoma information sites recommend getting a melanoma specialist and she said we didn't have any in Minnesota became melanoma is rare. I think we have doctors at the University of Minnesota and Mayo Clinic that might not call themselves melanoma specialists, but see a lot of melanoma patients, so I will have to figure that out after I get this surgery done.

                                                                                                                                                                    I scared a nurse there, the thing that goes on the finger that registers oxygen levels wouldn't go over 75 and she kept trying other fingers and was getting anxious. I have this other stupid autoimmune thing called Raynaud's that causes that, and then I told the doctor and she knew right away about that condition. It was nice to have someone back me up, rather than being looked at like I was on the verge of collapse.

                                                                                                                                                                    So that's my story for today. I hope you are doing okay. I think about you all the time and hope and pray that we're both going to get some good news about our lymph nodes. My husband came with me to the appointment today and has been downright cheerful since we left. I don't know what's up with that, but it's better than what he was acting like.  Hugs to you – Paula

                                                                                                                                                                    Janner
                                                                                                                                                                    Participant

                                                                                                                                                                      TIL showing "Brisk" is actually what you'd like to see.  And with your auto-immune issues, probably expected.  It just means the body is "checking out the lesion".  Since people with auto-immune diseases have hyper immune responses, it makes sense.  There have been studies showing brisk is "good" and others saying maybe not.  But to date, even with all their studies, TIL has no statistically proven value for prognosis.  And if "5" were so important and an indication of spread, it would be considered of higher value than the Breslow depth for prognosis.  It's not.  The depth is by far the more consistent and telling factor.  Up until the end of 2009, mitosis wasn't even a part of the staging process.  So making any assumption based on mitosis alone doesn't have a long history.  It's just another part of the picture.

                                                                                                                                                                      I wouldn't spend a lot of time worrying about everything in the pathology report.  Hard not to do, I know.  But it is all moot when you get the results of the SNB.  That has now become the next important step.  There is either spread or not.  And all the analysis in the world won't tell you if your lesion is one of the unlucky ones. 

                                                                                                                                                                      BTW, you had an excisional biopsy.  The other newbie poster had a punch biopsy, I believe.  Much smaller defect with a punch – usually requiring only a stitch or two.  Also, while waiting sucks, the surgery need only be performed within 90 days.  It's hard to wait for stuff, but the waiting hasn't really shown to be a problem prognosis-wise.  Mentally, it's a different story!

                                                                                                                                                                      Janner
                                                                                                                                                                      Participant

                                                                                                                                                                        TIL showing "Brisk" is actually what you'd like to see.  And with your auto-immune issues, probably expected.  It just means the body is "checking out the lesion".  Since people with auto-immune diseases have hyper immune responses, it makes sense.  There have been studies showing brisk is "good" and others saying maybe not.  But to date, even with all their studies, TIL has no statistically proven value for prognosis.  And if "5" were so important and an indication of spread, it would be considered of higher value than the Breslow depth for prognosis.  It's not.  The depth is by far the more consistent and telling factor.  Up until the end of 2009, mitosis wasn't even a part of the staging process.  So making any assumption based on mitosis alone doesn't have a long history.  It's just another part of the picture.

                                                                                                                                                                        I wouldn't spend a lot of time worrying about everything in the pathology report.  Hard not to do, I know.  But it is all moot when you get the results of the SNB.  That has now become the next important step.  There is either spread or not.  And all the analysis in the world won't tell you if your lesion is one of the unlucky ones. 

                                                                                                                                                                        BTW, you had an excisional biopsy.  The other newbie poster had a punch biopsy, I believe.  Much smaller defect with a punch – usually requiring only a stitch or two.  Also, while waiting sucks, the surgery need only be performed within 90 days.  It's hard to wait for stuff, but the waiting hasn't really shown to be a problem prognosis-wise.  Mentally, it's a different story!

                                                                                                                                                                        Minnesota
                                                                                                                                                                        Participant

                                                                                                                                                                          Hi – you are right, and the decoding and explanations here sure help too.

                                                                                                                                                                          I don't like my 5 number, and the word brisk. I am glad you don't have either of those. I am not entirely sure, but it sounds like your biopsy was different that mine. I had an excision, which was a little bigger than a quarter, and then stitched around the circle and pulled tight to keep the center open for "future" surgery (ugh), which is now all but healed since they waiting so (%$#^) long to get my results to me. Maybe it doesn't matter, if he had simply told me like Janner did that he needed to preserve a "path" to my lymph nodes, just in case, that would have made more sense.

                                                                                                                                                                          What is bugging me (still) is that my dermatologist gave me the impression that they were going to find it in my lymph nodes because of that 5, so I am hoping that my autoimmune skin problem is the cause. 

                                                                                                                                                                          This is a strange world where parts of a millimeter are significant, while we've all heard stories about cancer the size of fruit being taken out of people who are now fine. 

                                                                                                                                                                          How are you feeling health-wise? Before I found out, I would have said that I was the best I was in years (putting the autoimmune stuff aside). Since June, I have lost 22 lbs. from walking 2-3 miles a day, so I was feeling proud of myself for that (weight gain from corticosteroids over 11 years, which I am no longer taking). Its going to make me mad if people think I lost weight because of cancer because I've worked to hard to get it off the right way lol. Now I have terrible pain in my rib cage, groin and thumb, as well as having a constant headache – I'm sure it's from the stress.  I just want to delete the past week from my mind. 

                                                                                                                                                                          I don't know if you're at work, but if you are, I hope you are doing okay. I am trying to be positive, it probably doesn't sound like it, but I really am, and thank you for being my new friend too.

                                                                                                                                                                          Minnesota
                                                                                                                                                                          Participant

                                                                                                                                                                            Hi – you are right, and the decoding and explanations here sure help too.

                                                                                                                                                                            I don't like my 5 number, and the word brisk. I am glad you don't have either of those. I am not entirely sure, but it sounds like your biopsy was different that mine. I had an excision, which was a little bigger than a quarter, and then stitched around the circle and pulled tight to keep the center open for "future" surgery (ugh), which is now all but healed since they waiting so (%$#^) long to get my results to me. Maybe it doesn't matter, if he had simply told me like Janner did that he needed to preserve a "path" to my lymph nodes, just in case, that would have made more sense.

                                                                                                                                                                            What is bugging me (still) is that my dermatologist gave me the impression that they were going to find it in my lymph nodes because of that 5, so I am hoping that my autoimmune skin problem is the cause. 

                                                                                                                                                                            This is a strange world where parts of a millimeter are significant, while we've all heard stories about cancer the size of fruit being taken out of people who are now fine. 

                                                                                                                                                                            How are you feeling health-wise? Before I found out, I would have said that I was the best I was in years (putting the autoimmune stuff aside). Since June, I have lost 22 lbs. from walking 2-3 miles a day, so I was feeling proud of myself for that (weight gain from corticosteroids over 11 years, which I am no longer taking). Its going to make me mad if people think I lost weight because of cancer because I've worked to hard to get it off the right way lol. Now I have terrible pain in my rib cage, groin and thumb, as well as having a constant headache – I'm sure it's from the stress.  I just want to delete the past week from my mind. 

                                                                                                                                                                            I don't know if you're at work, but if you are, I hope you are doing okay. I am trying to be positive, it probably doesn't sound like it, but I really am, and thank you for being my new friend too.

                                                                                                                                                                            Kelli100299
                                                                                                                                                                            Participant

                                                                                                                                                                              Hi J3P – Your results and mine are very similar, other than a few word changes here and there, probably just the different clinics that produced the results. From what I have read on responses, they are very positive and I hope it makes you feel better about it. I know when I posted mine and people wrote that it's somewhat normal and to not worry to much, it did make me feel better. I don't know enough about all this yet to make suggestions about where you are at medically, however, based on all our friends responses, it's easier to remain positive..I am hoping you feel the same.

                                                                                                                                                                              Kelli

                                                                                                                                                                            Minnesota
                                                                                                                                                                            Participant

                                                                                                                                                                              This is a separate post with my pathology numbers (J3K, I'll write more later – that is so sweet about your daughter, it made me cry)

                                                                                                                                                                              First, my results were faxed to my clinic on 12-23-11, and I wasn't told until 1-3-12. If they were sparing me bad news over the holidays, shame on them. I might have had the surgery behind me now.

                                                                                                                                                                              (Lab: Mayo Clinic)

                                                                                                                                                                              Malignant melanoma without ulceration.

                                                                                                                                                                              Clark's level IV

                                                                                                                                                                              Breslow thickness 1.45 mm

                                                                                                                                                                              Mitotic rate is 5/mm2 

                                                                                                                                                                              Histogenetic type is superficial spreading.

                                                                                                                                                                              Radial growth phase is present.

                                                                                                                                                                              Vertical growth phase is present.

                                                                                                                                                                              Tumor cell morphology is epithelioid.

                                                                                                                                                                              Regression is absent.

                                                                                                                                                                              Tumor infiltrating lymphocytes are brisk.

                                                                                                                                                                              Microscopic satellites are absent.

                                                                                                                                                                              Neurotropism is absent.

                                                                                                                                                                              Angiolymphatic invasion is absent.

                                                                                                                                                                              Tumor cells are immunoreactive for Melan-A. The tumor extends to within 1.2 mm of the nearest lateral margin. Complete re-excision with appropriate surgical margins recommended.

                                                                                                                                                                              ________________

                                                                                                                                                                              I appreciate any comments, good or bad – thanks!

                                                                                                                                                                              Minnesota
                                                                                                                                                                              Participant

                                                                                                                                                                                This is a separate post with my pathology numbers (J3K, I'll write more later – that is so sweet about your daughter, it made me cry)

                                                                                                                                                                                First, my results were faxed to my clinic on 12-23-11, and I wasn't told until 1-3-12. If they were sparing me bad news over the holidays, shame on them. I might have had the surgery behind me now.

                                                                                                                                                                                (Lab: Mayo Clinic)

                                                                                                                                                                                Malignant melanoma without ulceration.

                                                                                                                                                                                Clark's level IV

                                                                                                                                                                                Breslow thickness 1.45 mm

                                                                                                                                                                                Mitotic rate is 5/mm2 

                                                                                                                                                                                Histogenetic type is superficial spreading.

                                                                                                                                                                                Radial growth phase is present.

                                                                                                                                                                                Vertical growth phase is present.

                                                                                                                                                                                Tumor cell morphology is epithelioid.

                                                                                                                                                                                Regression is absent.

                                                                                                                                                                                Tumor infiltrating lymphocytes are brisk.

                                                                                                                                                                                Microscopic satellites are absent.

                                                                                                                                                                                Neurotropism is absent.

                                                                                                                                                                                Angiolymphatic invasion is absent.

                                                                                                                                                                                Tumor cells are immunoreactive for Melan-A. The tumor extends to within 1.2 mm of the nearest lateral margin. Complete re-excision with appropriate surgical margins recommended.

                                                                                                                                                                                ________________

                                                                                                                                                                                I appreciate any comments, good or bad – thanks!

                                                                                                                                                                                tkoss
                                                                                                                                                                                Participant
                                                                                                                                                                                  a short intro. biopsy done, holiday looming , so i read my path report online. a few key words gave me a clue otherwise totally Latin to me. my opinion is the more you can research before you meet with the Doc the more questions you can poise. You will find yourself leaving an exam wishing you would ask this or that.

                                                                                                                                                                                  more importantly:

                                                                                                                                                                                  I had a Oncological Surgeon do the SLNB and WLE. In the consult about lymph node scanning and surgery he discussed SLNB vs. CLNB and other factors. but he knew his way around a cancerous tissue.

                                                                                                                                                                                  I don’t know what level of expertise you might get from and ordinary surgeon.

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