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Melanoma Diagnosis + Waiting = MAJOR ANXIETY

Forums Cutaneous Melanoma Community Melanoma Diagnosis + Waiting = MAJOR ANXIETY

  • Post
    anp21
    Participant

      Hello all,

      I have decided to post in hopes that someone will be able to help me to calm my nerves during the waiting time.  I have a wonderful support system; my husband, family and friends have been so amazing since I heard the words melanoma, but I still feel so alone.  It does not help that I have severe anxiety and always fear the worst. Unfortunately, this time, my worst fears are a reality.  

      On July 28, 2016 I received the news from my dermatologist that a mole removed from my right thigh was indeed a melanoma. My dermatologist described it as superficial and stated that we caught it early. She scheduled me an appointment with a surgical oncologist and an oncologist who specializes in Melanoma. From my pathology, I understand that it is .59mm in depth, clear margins, no ulceration, mitosis is a 1, Clark's Level III.  

      After waiting two anguishing weeks, I finally saw the two oncologists last Thursday.  I first saw the surgeon and his plan involved a WLE.  He did not feel that a SNB was necessary because of my age (31).  When the I saw the oncologist, he felt it important to also do a SNB and a PET scan.  He explained he felt it necessary due to the level 1 mitotic rate. He feels that my stage at this point is a T1b, but will not know until surgery and pathology is complete. 

      My PET is scheduled for Friday and my surgery for Monday.  In the meantime, my anxiety is at a fever pitch. I am terrified that my melanoma has spread to my nodes. I am mostly feeling panic because at first, my derm and my PCP both said I would just have to have a WLE and I would be done. Now that I must also have a PET and SNB I am out of my mind with fear and anxiety. I just would like some insight from others who have experienced a similar situation/feelings.  I have a 10 month old son and I am terrified he is going to have to grow up without his mother.  

       

    Viewing 24 reply threads
    • Replies
        ed williams
        Participant

          Hi Anp21, my first question is who is your Oncologist and is this person a Melanoma specialist? I am sure others from the forum will give you sound advice but if I am not mistaken with the depth of .59mm a WLE is all that is required at this point. Best Wishes!!! Ed

          ed williams
          Participant

            Hi Anp21, my first question is who is your Oncologist and is this person a Melanoma specialist? I am sure others from the forum will give you sound advice but if I am not mistaken with the depth of .59mm a WLE is all that is required at this point. Best Wishes!!! Ed

              anp21
              Participant

                Hi Ed,

                Thank you so much for your quick response.  My oncologist is Dr. Ahmad Tarhini and he is in the Hematology/Oncology Group at Hillman Cancer Center in Pittsburgh, Pa.  He does specialize in Melanoma and other skin cancers, as well as respiratory cancers.

                From my research, I found similar information to support your comment.  As I was also, told the same by my PCP, Dermatologist and the Surgical Oncologist.  

                Not sure what my next step its…but I'm praying for the PET to come back negative.

                Thank you for your wishes, they are greatly appreciated. 

                anp21
                Participant

                  Hi Ed,

                  Thank you so much for your quick response.  My oncologist is Dr. Ahmad Tarhini and he is in the Hematology/Oncology Group at Hillman Cancer Center in Pittsburgh, Pa.  He does specialize in Melanoma and other skin cancers, as well as respiratory cancers.

                  From my research, I found similar information to support your comment.  As I was also, told the same by my PCP, Dermatologist and the Surgical Oncologist.  

                  Not sure what my next step its…but I'm praying for the PET to come back negative.

                  Thank you for your wishes, they are greatly appreciated. 

                  anp21
                  Participant

                    Hi Ed,

                    Thank you so much for your quick response.  My oncologist is Dr. Ahmad Tarhini and he is in the Hematology/Oncology Group at Hillman Cancer Center in Pittsburgh, Pa.  He does specialize in Melanoma and other skin cancers, as well as respiratory cancers.

                    From my research, I found similar information to support your comment.  As I was also, told the same by my PCP, Dermatologist and the Surgical Oncologist.  

                    Not sure what my next step its…but I'm praying for the PET to come back negative.

                    Thank you for your wishes, they are greatly appreciated. 

                  ed williams
                  Participant

                    Hi Anp21, my first question is who is your Oncologist and is this person a Melanoma specialist? I am sure others from the forum will give you sound advice but if I am not mistaken with the depth of .59mm a WLE is all that is required at this point. Best Wishes!!! Ed

                    jennunicorn
                    Participant

                      The standard for getting a SLNB starts at 1.00mm and up and it gets considered for .75mm-.99mm depending on other features such as high mitotic rate (which yours is 1 and that is not high). So, to get a SLNB with a .59mm primary, non ulcerated and low mitotic rate, I would be incredibly surprised if there is anything in your lymph nodes. Majority of patients in your situation would only get a WLE and regular skin checks after that. It's a little unnecessarily invasive to do the SLNB, a PET scan is even a bit much, but I would say if you get a PET scan and it comes back clear then there's really no reason for someone with a thin melanoma to be put through the SLNB. Just my thoughts on it. If getting the SLNB helps you feel better about everything and your insurance will pay for it then that's ok, it's totally up to you. Just know that's not typical. 

                      Hopefully you can get through this anxiety, it's not easy and it's not fun, we definitely understand. Just know that you did catch it early and you're going to be ok. Your son will have you around for a very long time. 

                        anp21
                        Participant

                          Jenn,

                          Thank you so much for your quick and detailed response.  After my research, as I mentioned to Ed above, I was quite surprised that my oncologist was going to to do the node biopsy.  Thank you also, for your positive energy and reaffirmation that I'm going to be around for my son. He is the greatest joy in my life and my absolute motivation to fight and kick this cancer in the butt! Best wishes to you, my dear. 🙂

                          anp21
                          Participant

                            Jenn,

                            Thank you so much for your quick and detailed response.  After my research, as I mentioned to Ed above, I was quite surprised that my oncologist was going to to do the node biopsy.  Thank you also, for your positive energy and reaffirmation that I'm going to be around for my son. He is the greatest joy in my life and my absolute motivation to fight and kick this cancer in the butt! Best wishes to you, my dear. 🙂

                            Aubreesmommy41
                            Participant

                              I don't have much info to add.. I'm 1a. WLE no snb.. Did get a pet scan because my Derm said I was too anxious.. It came back fine.. I recently had my scar biopsied because 2 small spots appeared on it.. Came back benign thank god.. Just wanted to say I am a first time mommy at 41 of a 6 month old baby girl.. I completely get your fear as I am living with it as well.. I have a lot of moles and they all look bad to me.. Just wanted to say your not alone living with the fear.. The pet scan is a piece of cake.. The build up in your mind is the worst but the thing itself is nothing.. Ill be praying for great results for you..  Chin up

                              Aubreesmommy41
                              Participant

                                I don't have much info to add.. I'm 1a. WLE no snb.. Did get a pet scan because my Derm said I was too anxious.. It came back fine.. I recently had my scar biopsied because 2 small spots appeared on it.. Came back benign thank god.. Just wanted to say I am a first time mommy at 41 of a 6 month old baby girl.. I completely get your fear as I am living with it as well.. I have a lot of moles and they all look bad to me.. Just wanted to say your not alone living with the fear.. The pet scan is a piece of cake.. The build up in your mind is the worst but the thing itself is nothing.. Ill be praying for great results for you..  Chin up

                                Aubreesmommy41
                                Participant

                                  I don't have much info to add.. I'm 1a. WLE no snb.. Did get a pet scan because my Derm said I was too anxious.. It came back fine.. I recently had my scar biopsied because 2 small spots appeared on it.. Came back benign thank god.. Just wanted to say I am a first time mommy at 41 of a 6 month old baby girl.. I completely get your fear as I am living with it as well.. I have a lot of moles and they all look bad to me.. Just wanted to say your not alone living with the fear.. The pet scan is a piece of cake.. The build up in your mind is the worst but the thing itself is nothing.. Ill be praying for great results for you..  Chin up

                                  anp21
                                  Participant

                                    Thank you so much for your reply.  It is hard being a momma and going through this.  I just want to enjoy my son and not have to deal with this.  I am trying to stay positive and pray for a good result.  Best wishes to you.

                                     

                                    anp21
                                    Participant

                                      Thank you so much for your reply.  It is hard being a momma and going through this.  I just want to enjoy my son and not have to deal with this.  I am trying to stay positive and pray for a good result.  Best wishes to you.

                                       

                                      anp21
                                      Participant

                                        Thank you so much for your reply.  It is hard being a momma and going through this.  I just want to enjoy my son and not have to deal with this.  I am trying to stay positive and pray for a good result.  Best wishes to you.

                                         

                                        anp21
                                        Participant

                                          Jenn,

                                          Thank you so much for your quick and detailed response.  After my research, as I mentioned to Ed above, I was quite surprised that my oncologist was going to to do the node biopsy.  Thank you also, for your positive energy and reaffirmation that I'm going to be around for my son. He is the greatest joy in my life and my absolute motivation to fight and kick this cancer in the butt! Best wishes to you, my dear. 🙂

                                        jennunicorn
                                        Participant

                                          The standard for getting a SLNB starts at 1.00mm and up and it gets considered for .75mm-.99mm depending on other features such as high mitotic rate (which yours is 1 and that is not high). So, to get a SLNB with a .59mm primary, non ulcerated and low mitotic rate, I would be incredibly surprised if there is anything in your lymph nodes. Majority of patients in your situation would only get a WLE and regular skin checks after that. It's a little unnecessarily invasive to do the SLNB, a PET scan is even a bit much, but I would say if you get a PET scan and it comes back clear then there's really no reason for someone with a thin melanoma to be put through the SLNB. Just my thoughts on it. If getting the SLNB helps you feel better about everything and your insurance will pay for it then that's ok, it's totally up to you. Just know that's not typical. 

                                          Hopefully you can get through this anxiety, it's not easy and it's not fun, we definitely understand. Just know that you did catch it early and you're going to be ok. Your son will have you around for a very long time. 

                                          jennunicorn
                                          Participant

                                            The standard for getting a SLNB starts at 1.00mm and up and it gets considered for .75mm-.99mm depending on other features such as high mitotic rate (which yours is 1 and that is not high). So, to get a SLNB with a .59mm primary, non ulcerated and low mitotic rate, I would be incredibly surprised if there is anything in your lymph nodes. Majority of patients in your situation would only get a WLE and regular skin checks after that. It's a little unnecessarily invasive to do the SLNB, a PET scan is even a bit much, but I would say if you get a PET scan and it comes back clear then there's really no reason for someone with a thin melanoma to be put through the SLNB. Just my thoughts on it. If getting the SLNB helps you feel better about everything and your insurance will pay for it then that's ok, it's totally up to you. Just know that's not typical. 

                                            Hopefully you can get through this anxiety, it's not easy and it's not fun, we definitely understand. Just know that you did catch it early and you're going to be ok. Your son will have you around for a very long time. 

                                            Joycem
                                            Participant

                                              Hello anp21, sorry you have landed here. Having a 10 month old is quite terrifying enough and now this! I am also a melanewbie only about a week further along than you, recovering from my WLE and SNB and waiting for biopsy results and next steps. Ed and Jenn have given good wise info. 

                                              I've done too much reading and scared myself plenty also, but it does sound like you've caught things early and so have good reason to feel confident in a healthy and long future. So many hope filling stories and support an good information are available here. 

                                              I find the following things now help keep the quite normal anxiety manageable (sometimes) for me:

                                              *exercise- endorphins will make you feel so so much better.

                                              *4-7-8 breathing (Google if not familiar)

                                              *eating / cooking healthy food for my family and myself gives me a small sense of "doing" something helpful. 

                                              *staying busy with whatever makes you lose track of time…for me playing violin, going to concerts, work(pharmacy),I play around on tumblr a little

                                              *psalms (I have a few memorized which has come in handy esp 46, 23, 95)

                                              *keeping in mind that prognosis statistics reflect patients diagnosed years ago, and things are really changing with regards to treatments, so don't apply them to yourself.

                                              *keeping in mind that life is uncertain and fragile (and finite) for every human on earth, so all any of us can do is live and love today. 

                                              *reminding myself that I am held by a loving and good God, who cares both for me and those I love and who will be with us all no matter the course this thing takes. 

                                              Praying for your peace, the very best care, and good news!

                                              Grace to you, 

                                              joyce

                                                anp21
                                                Participant

                                                  Hello Joyce,

                                                  Thank you for your great tips to help me find some sanity.  I have a lot of faith in God and that gives me strength and peace.  I need to remind myself more of his love and care.  I am a teacher, so school is starting back up again and that is keeping my mind busy, along with my son, so I am thankful for that. How is your recovery going?  Was the surgery bad?  I will pray for good results from your biopsy.  Take good care 🙂

                                                  anp21
                                                  Participant

                                                    Hello Joyce,

                                                    Thank you for your great tips to help me find some sanity.  I have a lot of faith in God and that gives me strength and peace.  I need to remind myself more of his love and care.  I am a teacher, so school is starting back up again and that is keeping my mind busy, along with my son, so I am thankful for that. How is your recovery going?  Was the surgery bad?  I will pray for good results from your biopsy.  Take good care 🙂

                                                    anp21
                                                    Participant

                                                      Hello Joyce,

                                                      Thank you for your great tips to help me find some sanity.  I have a lot of faith in God and that gives me strength and peace.  I need to remind myself more of his love and care.  I am a teacher, so school is starting back up again and that is keeping my mind busy, along with my son, so I am thankful for that. How is your recovery going?  Was the surgery bad?  I will pray for good results from your biopsy.  Take good care 🙂

                                                    Joycem
                                                    Participant

                                                      Hello anp21, sorry you have landed here. Having a 10 month old is quite terrifying enough and now this! I am also a melanewbie only about a week further along than you, recovering from my WLE and SNB and waiting for biopsy results and next steps. Ed and Jenn have given good wise info. 

                                                      I've done too much reading and scared myself plenty also, but it does sound like you've caught things early and so have good reason to feel confident in a healthy and long future. So many hope filling stories and support an good information are available here. 

                                                      I find the following things now help keep the quite normal anxiety manageable (sometimes) for me:

                                                      *exercise- endorphins will make you feel so so much better.

                                                      *4-7-8 breathing (Google if not familiar)

                                                      *eating / cooking healthy food for my family and myself gives me a small sense of "doing" something helpful. 

                                                      *staying busy with whatever makes you lose track of time…for me playing violin, going to concerts, work(pharmacy),I play around on tumblr a little

                                                      *psalms (I have a few memorized which has come in handy esp 46, 23, 95)

                                                      *keeping in mind that prognosis statistics reflect patients diagnosed years ago, and things are really changing with regards to treatments, so don't apply them to yourself.

                                                      *keeping in mind that life is uncertain and fragile (and finite) for every human on earth, so all any of us can do is live and love today. 

                                                      *reminding myself that I am held by a loving and good God, who cares both for me and those I love and who will be with us all no matter the course this thing takes. 

                                                      Praying for your peace, the very best care, and good news!

                                                      Grace to you, 

                                                      joyce

                                                      Joycem
                                                      Participant

                                                        Hello anp21, sorry you have landed here. Having a 10 month old is quite terrifying enough and now this! I am also a melanewbie only about a week further along than you, recovering from my WLE and SNB and waiting for biopsy results and next steps. Ed and Jenn have given good wise info. 

                                                        I've done too much reading and scared myself plenty also, but it does sound like you've caught things early and so have good reason to feel confident in a healthy and long future. So many hope filling stories and support an good information are available here. 

                                                        I find the following things now help keep the quite normal anxiety manageable (sometimes) for me:

                                                        *exercise- endorphins will make you feel so so much better.

                                                        *4-7-8 breathing (Google if not familiar)

                                                        *eating / cooking healthy food for my family and myself gives me a small sense of "doing" something helpful. 

                                                        *staying busy with whatever makes you lose track of time…for me playing violin, going to concerts, work(pharmacy),I play around on tumblr a little

                                                        *psalms (I have a few memorized which has come in handy esp 46, 23, 95)

                                                        *keeping in mind that prognosis statistics reflect patients diagnosed years ago, and things are really changing with regards to treatments, so don't apply them to yourself.

                                                        *keeping in mind that life is uncertain and fragile (and finite) for every human on earth, so all any of us can do is live and love today. 

                                                        *reminding myself that I am held by a loving and good God, who cares both for me and those I love and who will be with us all no matter the course this thing takes. 

                                                        Praying for your peace, the very best care, and good news!

                                                        Grace to you, 

                                                        joyce

                                                        Kim K
                                                        Participant

                                                          Sorry you had to join us and I totally understand where you are.  Been there, done that, and have the scars to show for it.

                                                          With your early stage only a WLE is needed and annual skin checks.  PERIOD.  Any further testing statistically will find more benign junk in your body and expose yourself to radiation and possibly unnecessary surgery.  As hard as it is not to go looking for a needle in the haystack just to feel safe, the risks to do anything more at this time far outweigh the benefits.

                                                          You must have good insurance to approve PET/CT for your stage!  You don't have ulceration, a very low mitotic rate, and it is a very shallow tumor.  Monitoring with frequent skin checks is actually the purdent course to take in your case.  Melanoma runs a full spectrum of disease, you are on the luckiest / most optimistic side of that scale even though right now it is terrifiying.

                                                          For perspective, my initial diagnosis was 2.06 mm, no ulceration, clark IV, no vascular or lymphatic invasion.  At stage 2A a SNB was called for.  My SNB was negative.  The standard follow up for that depth was actually with a surgical onc. (Most won't see you with your shallow tumor), annual chest x-ray and some blood work.  That was it.

                                                          Yes I had a physical every 3 months for the first 2 years, then every 4 months the next, then every 6 months. until 5 years out.  Scans and labs only annually for a tumor that was almost 4x as deep as yours.  No PET/CT, just the SNB.

                                                          I hope it puts things into perspective, if anything this is just a warning across the bow to see your derm regularly and become familiar with what is normal on your body.

                                                          Easier said then done, but don't freak out too much.  If you progress to stage IV with your report, it would be a rarity and you WILL find those people here on this site.  Don't let that mess with your head.  Janner has a great forum for stage I & II patients that may actually be more comforting for you.

                                                          Take care 🙂

                                                          Kim K
                                                          Participant

                                                            Sorry you had to join us and I totally understand where you are.  Been there, done that, and have the scars to show for it.

                                                            With your early stage only a WLE is needed and annual skin checks.  PERIOD.  Any further testing statistically will find more benign junk in your body and expose yourself to radiation and possibly unnecessary surgery.  As hard as it is not to go looking for a needle in the haystack just to feel safe, the risks to do anything more at this time far outweigh the benefits.

                                                            You must have good insurance to approve PET/CT for your stage!  You don't have ulceration, a very low mitotic rate, and it is a very shallow tumor.  Monitoring with frequent skin checks is actually the purdent course to take in your case.  Melanoma runs a full spectrum of disease, you are on the luckiest / most optimistic side of that scale even though right now it is terrifiying.

                                                            For perspective, my initial diagnosis was 2.06 mm, no ulceration, clark IV, no vascular or lymphatic invasion.  At stage 2A a SNB was called for.  My SNB was negative.  The standard follow up for that depth was actually with a surgical onc. (Most won't see you with your shallow tumor), annual chest x-ray and some blood work.  That was it.

                                                            Yes I had a physical every 3 months for the first 2 years, then every 4 months the next, then every 6 months. until 5 years out.  Scans and labs only annually for a tumor that was almost 4x as deep as yours.  No PET/CT, just the SNB.

                                                            I hope it puts things into perspective, if anything this is just a warning across the bow to see your derm regularly and become familiar with what is normal on your body.

                                                            Easier said then done, but don't freak out too much.  If you progress to stage IV with your report, it would be a rarity and you WILL find those people here on this site.  Don't let that mess with your head.  Janner has a great forum for stage I & II patients that may actually be more comforting for you.

                                                            Take care 🙂

                                                            Kim K
                                                            Participant

                                                              Sorry you had to join us and I totally understand where you are.  Been there, done that, and have the scars to show for it.

                                                              With your early stage only a WLE is needed and annual skin checks.  PERIOD.  Any further testing statistically will find more benign junk in your body and expose yourself to radiation and possibly unnecessary surgery.  As hard as it is not to go looking for a needle in the haystack just to feel safe, the risks to do anything more at this time far outweigh the benefits.

                                                              You must have good insurance to approve PET/CT for your stage!  You don't have ulceration, a very low mitotic rate, and it is a very shallow tumor.  Monitoring with frequent skin checks is actually the purdent course to take in your case.  Melanoma runs a full spectrum of disease, you are on the luckiest / most optimistic side of that scale even though right now it is terrifiying.

                                                              For perspective, my initial diagnosis was 2.06 mm, no ulceration, clark IV, no vascular or lymphatic invasion.  At stage 2A a SNB was called for.  My SNB was negative.  The standard follow up for that depth was actually with a surgical onc. (Most won't see you with your shallow tumor), annual chest x-ray and some blood work.  That was it.

                                                              Yes I had a physical every 3 months for the first 2 years, then every 4 months the next, then every 6 months. until 5 years out.  Scans and labs only annually for a tumor that was almost 4x as deep as yours.  No PET/CT, just the SNB.

                                                              I hope it puts things into perspective, if anything this is just a warning across the bow to see your derm regularly and become familiar with what is normal on your body.

                                                              Easier said then done, but don't freak out too much.  If you progress to stage IV with your report, it would be a rarity and you WILL find those people here on this site.  Don't let that mess with your head.  Janner has a great forum for stage I & II patients that may actually be more comforting for you.

                                                              Take care 🙂

                                                                anp21
                                                                Participant

                                                                  I will go to the doctor everyday if it means I can stay healthy.  I plan to stay vigilant and alert and pay attention and never miss a derm appointment again.  This is a reality check if there ever was one.  I appreciate your persepective and I hope that you continue to stay well.  I am trying my best to think positive, but as you say, easier said than done.  Anxiety sucks! So does cancer, so I'm just trying to keep it together.  I am a teacher and am very blessed to have good insurance.  I guess I should mention that my surgical oncologist had me get a chest x-ray and blood work done and that came back normal.  So hopefully that is a good sign.  

                                                                  Best wishes to you, and I thank you sincerely for your reply 🙂 

                                                                  anp21
                                                                  Participant

                                                                    I will go to the doctor everyday if it means I can stay healthy.  I plan to stay vigilant and alert and pay attention and never miss a derm appointment again.  This is a reality check if there ever was one.  I appreciate your persepective and I hope that you continue to stay well.  I am trying my best to think positive, but as you say, easier said than done.  Anxiety sucks! So does cancer, so I'm just trying to keep it together.  I am a teacher and am very blessed to have good insurance.  I guess I should mention that my surgical oncologist had me get a chest x-ray and blood work done and that came back normal.  So hopefully that is a good sign.  

                                                                    Best wishes to you, and I thank you sincerely for your reply 🙂 

                                                                    anp21
                                                                    Participant

                                                                      I will go to the doctor everyday if it means I can stay healthy.  I plan to stay vigilant and alert and pay attention and never miss a derm appointment again.  This is a reality check if there ever was one.  I appreciate your persepective and I hope that you continue to stay well.  I am trying my best to think positive, but as you say, easier said than done.  Anxiety sucks! So does cancer, so I'm just trying to keep it together.  I am a teacher and am very blessed to have good insurance.  I guess I should mention that my surgical oncologist had me get a chest x-ray and blood work done and that came back normal.  So hopefully that is a good sign.  

                                                                      Best wishes to you, and I thank you sincerely for your reply 🙂 

                                                                    Bubbles
                                                                    Participant

                                                                      Hi anp21,

                                                                      I am sorry for all the anxiety and worry you are currently experiencing. However, I have a bit of a different perspective from the advice you have been given. I see no reason NOT to do a sentinel node biopsy. Why not? It is minimally invasive and can be done with the wide excision. That way you will KNOW if there was infiltration to the node or not and will not have to spend your time speculating. Here is an article addressing exactly that: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/odds-of-positive-sentinel-node-in.html

                                                                      The odds are that your node will be negative. The removal of a positive of node will probably NOT improve (or change in any way) your survival. Should you have a positive node….you would then have to decide whether or not to have a complete lymph node disection. Not a terribly clear answer as to what to do on that one. However, having a positive node would change your staging and follow up scans (as well as the reasoning to support the insurance company to pay for them) considerably. If it were me….I would want to know. In fact, 13 years ago…it was me. A superficial lesion, 0.61mm, albeit Clark level 4, and a positive node. 

                                                                      When you add what we know about women, esp those younger than 40, pregnancy, and melanoma risk….the question becomes espcially redundant. Here's an article with another link within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/women-and-melanoma-risk.html

                                                                      I do not wish to frighten you. It is much easier to tell someone, 'Oh, you'll be fine!", rather than something they don't want to hear. I just want you to be proactive, armed with the facts that are pertinent to your condition, and allow you to make the best choices for you.  Melanoma doesn't play. You need look at this board only 2 miliseconds to realize that.

                                                                      Do what you think best. Hold your sweet baby tight. I wish you my best. Celeste

                                                                       

                                                                        anp21
                                                                        Participant

                                                                          I appreciate your candidness.  I do not need "candy coated" right now, so thank you for that.  The link about women <40 and pregnancy is quite interesting.  Is it suggesting that there is a correlation between pregnancy and melanoma?  After getting over the initial shock of the melanoma diagnosis, and then understanding I would be having a WLE, it was tougher to swallow that I had to have more tests and additional surgery.  Once I got over the initial shock of THAT, I did feel that this way, I would be 100% sure what was going on.  I doubt I would be able to relax completely if I didn't have the SNB at this point.  I'd be terrified they missed something and my anxiety would be crippling.  If there is really no drawback to doing the SNB, then I don't see why not.

                                                                          What I am curious is about is the suggestion that the removal of the positive node would not change or improve my survival.  The PA and Oncologist did say that my staging would change if the node were positive, so I understand that. But removing the node would not increase my chances of survival?  I guess I'm confused. 

                                                                           

                                                                          anp21
                                                                          Participant

                                                                            I appreciate your candidness.  I do not need "candy coated" right now, so thank you for that.  The link about women <40 and pregnancy is quite interesting.  Is it suggesting that there is a correlation between pregnancy and melanoma?  After getting over the initial shock of the melanoma diagnosis, and then understanding I would be having a WLE, it was tougher to swallow that I had to have more tests and additional surgery.  Once I got over the initial shock of THAT, I did feel that this way, I would be 100% sure what was going on.  I doubt I would be able to relax completely if I didn't have the SNB at this point.  I'd be terrified they missed something and my anxiety would be crippling.  If there is really no drawback to doing the SNB, then I don't see why not.

                                                                            What I am curious is about is the suggestion that the removal of the positive node would not change or improve my survival.  The PA and Oncologist did say that my staging would change if the node were positive, so I understand that. But removing the node would not increase my chances of survival?  I guess I'm confused. 

                                                                             

                                                                            Bubbles
                                                                            Participant

                                                                              You are not alone in your confusion.  There are many, many articles on this topic on my blog…use the search bubble to top left if you are interested.  Here is one:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/surgical-management-and-adjuvant.html

                                                                              So the first question is about testing the sentinel node.  That just lets you know what's there….what stage you REALLY are…and lets you think about how best to follow those patients.  Common sense would indicate that getting a positive node out of you would improve prognosis by diminishing spread….and maybe it does….but it hasn't been conclusively proven to do so.

                                                                              Then….there is the question about whether or not to do a complete lymph node disection if there IS a positive node.  And as I commented after the article I previously posted….this is where things get murky.  There are real live studies that shows that is helps.  There are other real live studies that say it doesn't.  This link contains both:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/sunbelt-melanoma-trial-final-results-no.html

                                                                              While I believe in being smart and pragmatic….I don't believe in borrowing trouble.  I would get my WLE along with a SNB.  Then, I would make sure I was being seen by a melanoma expert and participate in f/u appropriate to my staging and make any other decisions needed at that point.

                                                                              As to pregnancy and melanoma….we don't have a lot of answers….just correlations.  I hope this helps and I wish you well.  yours, c

                                                                              Bubbles
                                                                              Participant

                                                                                You are not alone in your confusion.  There are many, many articles on this topic on my blog…use the search bubble to top left if you are interested.  Here is one:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/surgical-management-and-adjuvant.html

                                                                                So the first question is about testing the sentinel node.  That just lets you know what's there….what stage you REALLY are…and lets you think about how best to follow those patients.  Common sense would indicate that getting a positive node out of you would improve prognosis by diminishing spread….and maybe it does….but it hasn't been conclusively proven to do so.

                                                                                Then….there is the question about whether or not to do a complete lymph node disection if there IS a positive node.  And as I commented after the article I previously posted….this is where things get murky.  There are real live studies that shows that is helps.  There are other real live studies that say it doesn't.  This link contains both:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/sunbelt-melanoma-trial-final-results-no.html

                                                                                While I believe in being smart and pragmatic….I don't believe in borrowing trouble.  I would get my WLE along with a SNB.  Then, I would make sure I was being seen by a melanoma expert and participate in f/u appropriate to my staging and make any other decisions needed at that point.

                                                                                As to pregnancy and melanoma….we don't have a lot of answers….just correlations.  I hope this helps and I wish you well.  yours, c

                                                                                Bubbles
                                                                                Participant

                                                                                  You are not alone in your confusion.  There are many, many articles on this topic on my blog…use the search bubble to top left if you are interested.  Here is one:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/surgical-management-and-adjuvant.html

                                                                                  So the first question is about testing the sentinel node.  That just lets you know what's there….what stage you REALLY are…and lets you think about how best to follow those patients.  Common sense would indicate that getting a positive node out of you would improve prognosis by diminishing spread….and maybe it does….but it hasn't been conclusively proven to do so.

                                                                                  Then….there is the question about whether or not to do a complete lymph node disection if there IS a positive node.  And as I commented after the article I previously posted….this is where things get murky.  There are real live studies that shows that is helps.  There are other real live studies that say it doesn't.  This link contains both:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/sunbelt-melanoma-trial-final-results-no.html

                                                                                  While I believe in being smart and pragmatic….I don't believe in borrowing trouble.  I would get my WLE along with a SNB.  Then, I would make sure I was being seen by a melanoma expert and participate in f/u appropriate to my staging and make any other decisions needed at that point.

                                                                                  As to pregnancy and melanoma….we don't have a lot of answers….just correlations.  I hope this helps and I wish you well.  yours, c

                                                                                  anp21
                                                                                  Participant

                                                                                    I appreciate your candidness.  I do not need "candy coated" right now, so thank you for that.  The link about women <40 and pregnancy is quite interesting.  Is it suggesting that there is a correlation between pregnancy and melanoma?  After getting over the initial shock of the melanoma diagnosis, and then understanding I would be having a WLE, it was tougher to swallow that I had to have more tests and additional surgery.  Once I got over the initial shock of THAT, I did feel that this way, I would be 100% sure what was going on.  I doubt I would be able to relax completely if I didn't have the SNB at this point.  I'd be terrified they missed something and my anxiety would be crippling.  If there is really no drawback to doing the SNB, then I don't see why not.

                                                                                    What I am curious is about is the suggestion that the removal of the positive node would not change or improve my survival.  The PA and Oncologist did say that my staging would change if the node were positive, so I understand that. But removing the node would not increase my chances of survival?  I guess I'm confused. 

                                                                                     

                                                                                    sadlerla
                                                                                    Participant
                                                                                      Celeste, I see you posting quite a bit on this site. I am newly diagnosed with melanoma, 1.03 mm Clark level 4 no ulceration. My slnb is scheduled for the 15th as well as my WLE. I am terrified. My anxiety is out the roof. I find being alone is not a good thing for me right now. My oncologist did tell me that since my mole was on my lower left arm and an extremity that my chance of spreading was 12 to 15 percent. I am scared to death that it may have spread. I haven’t had so much as a cold in over 2 years and lead a very active life hitting the gym 6 days a week for 1-2 hour workouts. I just keep telling myself that it’s going good to be ok but I’m not so sure. My Dr gave me the option of surgery September 1 or 15. I chose the 15th because every other vacation I have scheduled this year has been cancelled. I was adamant to get this weekend getaway in but now wonder if I made the right decision. Anything you can offer to calm my nerves would be so greatly appreciated.
                                                                                      sadlerla
                                                                                      Participant
                                                                                        Celeste, I see you posting quite a bit on this site. I am newly diagnosed with melanoma, 1.03 mm Clark level 4 no ulceration. My slnb is scheduled for the 15th as well as my WLE. I am terrified. My anxiety is out the roof. I find being alone is not a good thing for me right now. My oncologist did tell me that since my mole was on my lower left arm and an extremity that my chance of spreading was 12 to 15 percent. I am scared to death that it may have spread. I haven’t had so much as a cold in over 2 years and lead a very active life hitting the gym 6 days a week for 1-2 hour workouts. I just keep telling myself that it’s going good to be ok but I’m not so sure. My Dr gave me the option of surgery September 1 or 15. I chose the 15th because every other vacation I have scheduled this year has been cancelled. I was adamant to get this weekend getaway in but now wonder if I made the right decision. Anything you can offer to calm my nerves would be so greatly appreciated.
                                                                                        sadlerla
                                                                                        Participant
                                                                                          Celeste, I see you posting quite a bit on this site. I am newly diagnosed with melanoma, 1.03 mm Clark level 4 no ulceration. My slnb is scheduled for the 15th as well as my WLE. I am terrified. My anxiety is out the roof. I find being alone is not a good thing for me right now. My oncologist did tell me that since my mole was on my lower left arm and an extremity that my chance of spreading was 12 to 15 percent. I am scared to death that it may have spread. I haven’t had so much as a cold in over 2 years and lead a very active life hitting the gym 6 days a week for 1-2 hour workouts. I just keep telling myself that it’s going good to be ok but I’m not so sure. My Dr gave me the option of surgery September 1 or 15. I chose the 15th because every other vacation I have scheduled this year has been cancelled. I was adamant to get this weekend getaway in but now wonder if I made the right decision. Anything you can offer to calm my nerves would be so greatly appreciated.
                                                                                        Bubbles
                                                                                        Participant

                                                                                          Hi anp21,

                                                                                          I am sorry for all the anxiety and worry you are currently experiencing. However, I have a bit of a different perspective from the advice you have been given. I see no reason NOT to do a sentinel node biopsy. Why not? It is minimally invasive and can be done with the wide excision. That way you will KNOW if there was infiltration to the node or not and will not have to spend your time speculating. Here is an article addressing exactly that: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/odds-of-positive-sentinel-node-in.html

                                                                                          The odds are that your node will be negative. The removal of a positive of node will probably NOT improve (or change in any way) your survival. Should you have a positive node….you would then have to decide whether or not to have a complete lymph node disection. Not a terribly clear answer as to what to do on that one. However, having a positive node would change your staging and follow up scans (as well as the reasoning to support the insurance company to pay for them) considerably. If it were me….I would want to know. In fact, 13 years ago…it was me. A superficial lesion, 0.61mm, albeit Clark level 4, and a positive node. 

                                                                                          When you add what we know about women, esp those younger than 40, pregnancy, and melanoma risk….the question becomes espcially redundant. Here's an article with another link within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/women-and-melanoma-risk.html

                                                                                          I do not wish to frighten you. It is much easier to tell someone, 'Oh, you'll be fine!", rather than something they don't want to hear. I just want you to be proactive, armed with the facts that are pertinent to your condition, and allow you to make the best choices for you.  Melanoma doesn't play. You need look at this board only 2 miliseconds to realize that.

                                                                                          Do what you think best. Hold your sweet baby tight. I wish you my best. Celeste

                                                                                           

                                                                                          Bubbles
                                                                                          Participant

                                                                                            Hi anp21,

                                                                                            I am sorry for all the anxiety and worry you are currently experiencing. However, I have a bit of a different perspective from the advice you have been given. I see no reason NOT to do a sentinel node biopsy. Why not? It is minimally invasive and can be done with the wide excision. That way you will KNOW if there was infiltration to the node or not and will not have to spend your time speculating. Here is an article addressing exactly that: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/odds-of-positive-sentinel-node-in.html

                                                                                            The odds are that your node will be negative. The removal of a positive of node will probably NOT improve (or change in any way) your survival. Should you have a positive node….you would then have to decide whether or not to have a complete lymph node disection. Not a terribly clear answer as to what to do on that one. However, having a positive node would change your staging and follow up scans (as well as the reasoning to support the insurance company to pay for them) considerably. If it were me….I would want to know. In fact, 13 years ago…it was me. A superficial lesion, 0.61mm, albeit Clark level 4, and a positive node. 

                                                                                            When you add what we know about women, esp those younger than 40, pregnancy, and melanoma risk….the question becomes espcially redundant. Here's an article with another link within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/women-and-melanoma-risk.html

                                                                                            I do not wish to frighten you. It is much easier to tell someone, 'Oh, you'll be fine!", rather than something they don't want to hear. I just want you to be proactive, armed with the facts that are pertinent to your condition, and allow you to make the best choices for you.  Melanoma doesn't play. You need look at this board only 2 miliseconds to realize that.

                                                                                            Do what you think best. Hold your sweet baby tight. I wish you my best. Celeste

                                                                                             

                                                                                            stars
                                                                                            Participant

                                                                                              It seems like overtreatment to me. If your insurance covers it and you don't mind undergoing the procedure, then go for it. I personally don't see any clinical rationale for a SLNB for a person with a fully excised stage 1b thin melanoma 0.59. What would be the clinical rationale? There's been a recent study in Australia that shows a definite benefit of SLNB for intermediate thickness or thick melanoma and suggests SLNB as a consideration (not certainly) for high risk thin melanomas. Yours is a thin melanoma, but I don't understand what so high risk about it? It's not >0.75mm, it's not ulcerated and the mitotic rate is not off the charts high.

                                                                                              Here's a link to the study, anyway:

                                                                                              http://www.racgp.org.au/afp/2015/august/sentinel-node-biopsy-should-be-the-standard-of-care-for-patients-with-intermediate-and-thick-melanomas/

                                                                                              I think it's fine if you go ahead, there's nothing to lose. It just seems unnecessary and possibly – even just by suggesting that it's needed – causing you more anxiety that it should.

                                                                                              stars
                                                                                              Participant

                                                                                                It seems like overtreatment to me. If your insurance covers it and you don't mind undergoing the procedure, then go for it. I personally don't see any clinical rationale for a SLNB for a person with a fully excised stage 1b thin melanoma 0.59. What would be the clinical rationale? There's been a recent study in Australia that shows a definite benefit of SLNB for intermediate thickness or thick melanoma and suggests SLNB as a consideration (not certainly) for high risk thin melanomas. Yours is a thin melanoma, but I don't understand what so high risk about it? It's not >0.75mm, it's not ulcerated and the mitotic rate is not off the charts high.

                                                                                                Here's a link to the study, anyway:

                                                                                                http://www.racgp.org.au/afp/2015/august/sentinel-node-biopsy-should-be-the-standard-of-care-for-patients-with-intermediate-and-thick-melanomas/

                                                                                                I think it's fine if you go ahead, there's nothing to lose. It just seems unnecessary and possibly – even just by suggesting that it's needed – causing you more anxiety that it should.

                                                                                                stars
                                                                                                Participant

                                                                                                  It seems like overtreatment to me. If your insurance covers it and you don't mind undergoing the procedure, then go for it. I personally don't see any clinical rationale for a SLNB for a person with a fully excised stage 1b thin melanoma 0.59. What would be the clinical rationale? There's been a recent study in Australia that shows a definite benefit of SLNB for intermediate thickness or thick melanoma and suggests SLNB as a consideration (not certainly) for high risk thin melanomas. Yours is a thin melanoma, but I don't understand what so high risk about it? It's not >0.75mm, it's not ulcerated and the mitotic rate is not off the charts high.

                                                                                                  Here's a link to the study, anyway:

                                                                                                  http://www.racgp.org.au/afp/2015/august/sentinel-node-biopsy-should-be-the-standard-of-care-for-patients-with-intermediate-and-thick-melanomas/

                                                                                                  I think it's fine if you go ahead, there's nothing to lose. It just seems unnecessary and possibly – even just by suggesting that it's needed – causing you more anxiety that it should.

                                                                                                  Alce123
                                                                                                  Participant
                                                                                                    I don’t really have too much else to add. I just want to share my experience since hearing others stories helped me a lot when I was awaiting final staging.

                                                                                                    I was diagnosed with stage 1a this summer while in the middle of an IVF cycle. The initial biopsy was .44, no ulceration, mitotic rate of <1. However, it was a punch biopsy of a large mole and since there was still quite a bit of it left they couldn't give me a final stage until the did a complete excision 2 weeks after being diagnosed.

                                                                                                    I was very excited about the prospect of finally becoming pregnant and this news, along with the waiting, made me very sad and anxious (I'm sure the extra hormones didn't help :p).

                                                                                                    Long story short, we froze 6 embryos and I had a WLE on 07/27. My doctor recommends waiting a least a year to try and become pregnant again. So, that makes me sad. HOWEVER, I am extraordinarily happy to say that there was NO residual tumor in the remaining portion of the lesion and, after a week of recovery from the surgery, life is pretty much back to normal 🙂

                                                                                                    I guess all I mean to say is that this is the toughest time for you and I really sympathize with what you're going through. It's not easy. But try to focus on the good parts (baby, husband, good prognosis) and know that no matter what happens this is the worst part, not knowing.

                                                                                                    As a side note, I did not have a SLN biopsy or any scans. My doctor is dr. Gastman at the Cleveland Clinic. He is very experienced with melanoma and recently released research on pregnancy acquired melanomas. Once the final path report came back there wasn't even a thought of doing a SLN biopsy.

                                                                                                    Hope this helps,

                                                                                                    Austine

                                                                                                    Alce123
                                                                                                    Participant
                                                                                                      I don’t really have too much else to add. I just want to share my experience since hearing others stories helped me a lot when I was awaiting final staging.

                                                                                                      I was diagnosed with stage 1a this summer while in the middle of an IVF cycle. The initial biopsy was .44, no ulceration, mitotic rate of <1. However, it was a punch biopsy of a large mole and since there was still quite a bit of it left they couldn't give me a final stage until the did a complete excision 2 weeks after being diagnosed.

                                                                                                      I was very excited about the prospect of finally becoming pregnant and this news, along with the waiting, made me very sad and anxious (I'm sure the extra hormones didn't help :p).

                                                                                                      Long story short, we froze 6 embryos and I had a WLE on 07/27. My doctor recommends waiting a least a year to try and become pregnant again. So, that makes me sad. HOWEVER, I am extraordinarily happy to say that there was NO residual tumor in the remaining portion of the lesion and, after a week of recovery from the surgery, life is pretty much back to normal 🙂

                                                                                                      I guess all I mean to say is that this is the toughest time for you and I really sympathize with what you're going through. It's not easy. But try to focus on the good parts (baby, husband, good prognosis) and know that no matter what happens this is the worst part, not knowing.

                                                                                                      As a side note, I did not have a SLN biopsy or any scans. My doctor is dr. Gastman at the Cleveland Clinic. He is very experienced with melanoma and recently released research on pregnancy acquired melanomas. Once the final path report came back there wasn't even a thought of doing a SLN biopsy.

                                                                                                      Hope this helps,

                                                                                                      Austine

                                                                                                        anp21
                                                                                                        Participant

                                                                                                          Austine, 

                                                                                                          Many prayers of healing to you. I am happy to hear things went well for you and will keep you and your journey towards a family in my thoughts. I greatly appreciate your input, as hearing other stories similar to mine helps me to know I'm not alone and gives me hope. The info that I'm finding about pregnancy and melanoma is alarming. Definitely a good thing to know for the future. You are absolutely right in the "not knowing" part being the worst. I feel like when I am equipped with all of the knowledge I will feel more calm. I am cautiously optimistic at this point and wish I could just fast forward through all of the waiting..

                                                                                                          anp21
                                                                                                          Participant

                                                                                                            Austine, 

                                                                                                            Many prayers of healing to you. I am happy to hear things went well for you and will keep you and your journey towards a family in my thoughts. I greatly appreciate your input, as hearing other stories similar to mine helps me to know I'm not alone and gives me hope. The info that I'm finding about pregnancy and melanoma is alarming. Definitely a good thing to know for the future. You are absolutely right in the "not knowing" part being the worst. I feel like when I am equipped with all of the knowledge I will feel more calm. I am cautiously optimistic at this point and wish I could just fast forward through all of the waiting..

                                                                                                            stars
                                                                                                            Participant

                                                                                                              Anecdotally, I believe my melanomas were brought on by pregnancy (I've had three thin melanomas). I clearly remember about the time of my first pregnancy seeing some subtle changes in one or two freckles, that over the years (!) became concerning enough to see a doctor about. Sure enough, three thin melanomas, all at once (though excised separately over a period of six months or so, I definitely had all three at once). If its any comfort, it only seemed to be with my first pregnancy – my second did not seem to trigger any changes like the first one did. I wouldn't change things for the world, having a family is amazing, but I do recall seeing my freckles start to change during pregnancy. I would never let fear get in the way of wanting children, and I think I went through a pretty much worst-case scenario with three thin melanomas developing at the same time.

                                                                                                              anp21
                                                                                                              Participant

                                                                                                                I would have to agree with you that I've seen changes in a couple moles/freckles since pregnancy.  There is a freckle on my arm that I am concerned about, and when I go in on Monday the surgeon is going to take a look.  If he's concerned they will just take it while I'm having my WLE on my leg.  I definitely intend to have more children, if I could be so blessed.  I pray that the one on my arm is nothing; one melanoma is ENOUGH. 

                                                                                                                anp21
                                                                                                                Participant

                                                                                                                  I would have to agree with you that I've seen changes in a couple moles/freckles since pregnancy.  There is a freckle on my arm that I am concerned about, and when I go in on Monday the surgeon is going to take a look.  If he's concerned they will just take it while I'm having my WLE on my leg.  I definitely intend to have more children, if I could be so blessed.  I pray that the one on my arm is nothing; one melanoma is ENOUGH. 

                                                                                                                  anp21
                                                                                                                  Participant

                                                                                                                    I would have to agree with you that I've seen changes in a couple moles/freckles since pregnancy.  There is a freckle on my arm that I am concerned about, and when I go in on Monday the surgeon is going to take a look.  If he's concerned they will just take it while I'm having my WLE on my leg.  I definitely intend to have more children, if I could be so blessed.  I pray that the one on my arm is nothing; one melanoma is ENOUGH. 

                                                                                                                    stars
                                                                                                                    Participant

                                                                                                                      Anecdotally, I believe my melanomas were brought on by pregnancy (I've had three thin melanomas). I clearly remember about the time of my first pregnancy seeing some subtle changes in one or two freckles, that over the years (!) became concerning enough to see a doctor about. Sure enough, three thin melanomas, all at once (though excised separately over a period of six months or so, I definitely had all three at once). If its any comfort, it only seemed to be with my first pregnancy – my second did not seem to trigger any changes like the first one did. I wouldn't change things for the world, having a family is amazing, but I do recall seeing my freckles start to change during pregnancy. I would never let fear get in the way of wanting children, and I think I went through a pretty much worst-case scenario with three thin melanomas developing at the same time.

                                                                                                                      stars
                                                                                                                      Participant

                                                                                                                        Anecdotally, I believe my melanomas were brought on by pregnancy (I've had three thin melanomas). I clearly remember about the time of my first pregnancy seeing some subtle changes in one or two freckles, that over the years (!) became concerning enough to see a doctor about. Sure enough, three thin melanomas, all at once (though excised separately over a period of six months or so, I definitely had all three at once). If its any comfort, it only seemed to be with my first pregnancy – my second did not seem to trigger any changes like the first one did. I wouldn't change things for the world, having a family is amazing, but I do recall seeing my freckles start to change during pregnancy. I would never let fear get in the way of wanting children, and I think I went through a pretty much worst-case scenario with three thin melanomas developing at the same time.

                                                                                                                        anp21
                                                                                                                        Participant

                                                                                                                          Austine, 

                                                                                                                          Many prayers of healing to you. I am happy to hear things went well for you and will keep you and your journey towards a family in my thoughts. I greatly appreciate your input, as hearing other stories similar to mine helps me to know I'm not alone and gives me hope. The info that I'm finding about pregnancy and melanoma is alarming. Definitely a good thing to know for the future. You are absolutely right in the "not knowing" part being the worst. I feel like when I am equipped with all of the knowledge I will feel more calm. I am cautiously optimistic at this point and wish I could just fast forward through all of the waiting..

                                                                                                                        Alce123
                                                                                                                        Participant
                                                                                                                          I don’t really have too much else to add. I just want to share my experience since hearing others stories helped me a lot when I was awaiting final staging.

                                                                                                                          I was diagnosed with stage 1a this summer while in the middle of an IVF cycle. The initial biopsy was .44, no ulceration, mitotic rate of <1. However, it was a punch biopsy of a large mole and since there was still quite a bit of it left they couldn't give me a final stage until the did a complete excision 2 weeks after being diagnosed.

                                                                                                                          I was very excited about the prospect of finally becoming pregnant and this news, along with the waiting, made me very sad and anxious (I'm sure the extra hormones didn't help :p).

                                                                                                                          Long story short, we froze 6 embryos and I had a WLE on 07/27. My doctor recommends waiting a least a year to try and become pregnant again. So, that makes me sad. HOWEVER, I am extraordinarily happy to say that there was NO residual tumor in the remaining portion of the lesion and, after a week of recovery from the surgery, life is pretty much back to normal 🙂

                                                                                                                          I guess all I mean to say is that this is the toughest time for you and I really sympathize with what you're going through. It's not easy. But try to focus on the good parts (baby, husband, good prognosis) and know that no matter what happens this is the worst part, not knowing.

                                                                                                                          As a side note, I did not have a SLN biopsy or any scans. My doctor is dr. Gastman at the Cleveland Clinic. He is very experienced with melanoma and recently released research on pregnancy acquired melanomas. Once the final path report came back there wasn't even a thought of doing a SLN biopsy.

                                                                                                                          Hope this helps,

                                                                                                                          Austine

                                                                                                                          kylez
                                                                                                                          Participant

                                                                                                                            Hi,

                                                                                                                            Seeing/"having" an oncologist all of a sudden is a pretty freaky thing. Interestingly, a) I never saw an oncologist with two different stage I skin melanomas. And b), I was not given a PET scan for either one. I *did* have SNBs for both. My first melanoma was 1mm deep, the second was 2mm deep.  

                                                                                                                            Psychologically,m it was an impact on me to have the stage I melanomas. But not as big an impact as it would have been if they had sent me to an oncologist. 

                                                                                                                            As far as SNB, I'm not a fan of getting surgical procedures that may not be necessary. There is always a risk of infection or other complication. Post-surgery nausea/vomiting is not fun either, which has accompanied every one of mine. At this point I'm happy not to need to get any surgery!!!

                                                                                                                            I can't advise who you should give more credence to, your oncologist or surgeon. When I've been super concerned about a decision point like this, I've gotten a second opinion. I realize you have two different opinions already, but from two different specialties, surgery vs. oncology.

                                                                                                                            Good luck on your choices and hopefully this is "one and done", no more. Stats are definitely, way on your side.

                                                                                                                            kylez
                                                                                                                            Participant

                                                                                                                              Hi,

                                                                                                                              Seeing/"having" an oncologist all of a sudden is a pretty freaky thing. Interestingly, a) I never saw an oncologist with two different stage I skin melanomas. And b), I was not given a PET scan for either one. I *did* have SNBs for both. My first melanoma was 1mm deep, the second was 2mm deep.  

                                                                                                                              Psychologically,m it was an impact on me to have the stage I melanomas. But not as big an impact as it would have been if they had sent me to an oncologist. 

                                                                                                                              As far as SNB, I'm not a fan of getting surgical procedures that may not be necessary. There is always a risk of infection or other complication. Post-surgery nausea/vomiting is not fun either, which has accompanied every one of mine. At this point I'm happy not to need to get any surgery!!!

                                                                                                                              I can't advise who you should give more credence to, your oncologist or surgeon. When I've been super concerned about a decision point like this, I've gotten a second opinion. I realize you have two different opinions already, but from two different specialties, surgery vs. oncology.

                                                                                                                              Good luck on your choices and hopefully this is "one and done", no more. Stats are definitely, way on your side.

                                                                                                                                youngann
                                                                                                                                Participant

                                                                                                                                  Kylez…all my life, everytime I had any kind of anesthesia, I vomited for hours afterwards. About 3 years ago, I mentioned it to the anesthesiologist as I was being prepped for surgery. This resulted in the anesthesia being adjusted for me rather than a 'one size fits all'. Ever since then, I make apoint of letting them know before each surgery and I haven't been sick after surgery since.

                                                                                                                                  jennunicorn
                                                                                                                                  Participant

                                                                                                                                    I have also always gotten very sick from anesthesia, so when I went in for my SLNB I let the anesthesiologist know and he said he would give me a lighter version and I shouldn't get sick at all. Well…. after surgery the nurses were pretty shocked when I started vomiting a lot. I was partially awake during surgery, so I know he didn't use much, just enough to relax me really, and it still made me super sick! Definitely asking for adjusted anesthesia for those of us prone to nausea is good.. wish it was more helpful for me, haha. 

                                                                                                                                    jennunicorn
                                                                                                                                    Participant

                                                                                                                                      I have also always gotten very sick from anesthesia, so when I went in for my SLNB I let the anesthesiologist know and he said he would give me a lighter version and I shouldn't get sick at all. Well…. after surgery the nurses were pretty shocked when I started vomiting a lot. I was partially awake during surgery, so I know he didn't use much, just enough to relax me really, and it still made me super sick! Definitely asking for adjusted anesthesia for those of us prone to nausea is good.. wish it was more helpful for me, haha. 

                                                                                                                                      jennunicorn
                                                                                                                                      Participant

                                                                                                                                        I have also always gotten very sick from anesthesia, so when I went in for my SLNB I let the anesthesiologist know and he said he would give me a lighter version and I shouldn't get sick at all. Well…. after surgery the nurses were pretty shocked when I started vomiting a lot. I was partially awake during surgery, so I know he didn't use much, just enough to relax me really, and it still made me super sick! Definitely asking for adjusted anesthesia for those of us prone to nausea is good.. wish it was more helpful for me, haha. 

                                                                                                                                        youngann
                                                                                                                                        Participant

                                                                                                                                          Kylez…all my life, everytime I had any kind of anesthesia, I vomited for hours afterwards. About 3 years ago, I mentioned it to the anesthesiologist as I was being prepped for surgery. This resulted in the anesthesia being adjusted for me rather than a 'one size fits all'. Ever since then, I make apoint of letting them know before each surgery and I haven't been sick after surgery since.

                                                                                                                                          youngann
                                                                                                                                          Participant

                                                                                                                                            Kylez…all my life, everytime I had any kind of anesthesia, I vomited for hours afterwards. About 3 years ago, I mentioned it to the anesthesiologist as I was being prepped for surgery. This resulted in the anesthesia being adjusted for me rather than a 'one size fits all'. Ever since then, I make apoint of letting them know before each surgery and I haven't been sick after surgery since.

                                                                                                                                            anp21
                                                                                                                                            Participant

                                                                                                                                              As someone with anxiety, hearing the word oncologist alone took me to a higher level.  As my dermatologist explained to me, she had scheduled me an appointment with a surgical oncologist.  She was also "going to see if Dr. Tarhini, an oncologist,can pop in to see you while you are with the surgeon."  I found it odd and was taken aback.  Everything I had researched and heard up unto that point had been – WLE completed by a surgeon and done.  But I thought, oh well, he'll just shore up what I already know. The next day, Hillman Cancer Center called to confirm my "appointment" with Dr. Tarhini.  I didn't panic, I just figured it was for billing purposes.  Let's be real – no doc is just "popping in" to give his thoughts on my case.  Anyway, when I finally went to my appointments, my surgeon basically confirmed what I had been told by two previous doctors, and all of my independent research – WLE.  He then said that he did NOT feel it necessary to complete a SLNB due to my age, but he'd leave it up to Dr. Tarhini.  When Dr. Tarhini came in, he explained that he wanted to do the WLE, SLNB and a PET scan.  To say I was floored would be putting it mildly.  Now I'm dealing with something way more involved when I didn't think it was going to be that way.  I didn't prepare myself to hear that information or come with questions, because at no point did anyone or anything hint that someone with my diagnosis would require a SLNB, let alone a PET scan.  Luckily, my mother, a medical assistant, was with me and asked if it was because of my mitotic rate (1).  He said yes, that it was that one thing that concerned him enough to do further testing.  

                                                                                                                                              After feeling so defeated and depressed the rest of that day, the next morning I woke up and contacted Dr. Tarhini's office.  I left a message stating I wanted further clarification.  His PA called me back and I asked her why they decided on this treatment for me.  She stated that it was to complete staging and determine if I need any additional treatment.  She said that they perform SLNB's on any patient with a melanoma larger that .50mm and/or mitotic rate of 1or >.  (Mine is .59 & 1 mitotic rate.) I don't know that I felt any better after speaking with her but I understood that I wasn't the exception to the rule, for whatever reason, and I guess that calmed me slightly.

                                                                                                                                              Ultimately, I am conflicted.  I do not want unnecessary surgery or raditation.  However, I do find peace in the fact that after this I will be equipped with the most accurate picture of my prognosis.  One thing that keeps sticking in my mind is the fact that I signed off to be a participant in a study.  It seemed like an okay idea at the time; if I would need additional treatment, I could be entered into trials.  But it gives me pause, because I wonder, even based on the responses I've received on this thread alone, that its a little above and beyond the typical treatment for someone in my shoes.  

                                                                                                                                               

                                                                                                                                               

                                                                                                                                              anp21
                                                                                                                                              Participant

                                                                                                                                                As someone with anxiety, hearing the word oncologist alone took me to a higher level.  As my dermatologist explained to me, she had scheduled me an appointment with a surgical oncologist.  She was also "going to see if Dr. Tarhini, an oncologist,can pop in to see you while you are with the surgeon."  I found it odd and was taken aback.  Everything I had researched and heard up unto that point had been – WLE completed by a surgeon and done.  But I thought, oh well, he'll just shore up what I already know. The next day, Hillman Cancer Center called to confirm my "appointment" with Dr. Tarhini.  I didn't panic, I just figured it was for billing purposes.  Let's be real – no doc is just "popping in" to give his thoughts on my case.  Anyway, when I finally went to my appointments, my surgeon basically confirmed what I had been told by two previous doctors, and all of my independent research – WLE.  He then said that he did NOT feel it necessary to complete a SLNB due to my age, but he'd leave it up to Dr. Tarhini.  When Dr. Tarhini came in, he explained that he wanted to do the WLE, SLNB and a PET scan.  To say I was floored would be putting it mildly.  Now I'm dealing with something way more involved when I didn't think it was going to be that way.  I didn't prepare myself to hear that information or come with questions, because at no point did anyone or anything hint that someone with my diagnosis would require a SLNB, let alone a PET scan.  Luckily, my mother, a medical assistant, was with me and asked if it was because of my mitotic rate (1).  He said yes, that it was that one thing that concerned him enough to do further testing.  

                                                                                                                                                After feeling so defeated and depressed the rest of that day, the next morning I woke up and contacted Dr. Tarhini's office.  I left a message stating I wanted further clarification.  His PA called me back and I asked her why they decided on this treatment for me.  She stated that it was to complete staging and determine if I need any additional treatment.  She said that they perform SLNB's on any patient with a melanoma larger that .50mm and/or mitotic rate of 1or >.  (Mine is .59 & 1 mitotic rate.) I don't know that I felt any better after speaking with her but I understood that I wasn't the exception to the rule, for whatever reason, and I guess that calmed me slightly.

                                                                                                                                                Ultimately, I am conflicted.  I do not want unnecessary surgery or raditation.  However, I do find peace in the fact that after this I will be equipped with the most accurate picture of my prognosis.  One thing that keeps sticking in my mind is the fact that I signed off to be a participant in a study.  It seemed like an okay idea at the time; if I would need additional treatment, I could be entered into trials.  But it gives me pause, because I wonder, even based on the responses I've received on this thread alone, that its a little above and beyond the typical treatment for someone in my shoes.  

                                                                                                                                                 

                                                                                                                                                 

                                                                                                                                                anp21
                                                                                                                                                Participant

                                                                                                                                                  As someone with anxiety, hearing the word oncologist alone took me to a higher level.  As my dermatologist explained to me, she had scheduled me an appointment with a surgical oncologist.  She was also "going to see if Dr. Tarhini, an oncologist,can pop in to see you while you are with the surgeon."  I found it odd and was taken aback.  Everything I had researched and heard up unto that point had been – WLE completed by a surgeon and done.  But I thought, oh well, he'll just shore up what I already know. The next day, Hillman Cancer Center called to confirm my "appointment" with Dr. Tarhini.  I didn't panic, I just figured it was for billing purposes.  Let's be real – no doc is just "popping in" to give his thoughts on my case.  Anyway, when I finally went to my appointments, my surgeon basically confirmed what I had been told by two previous doctors, and all of my independent research – WLE.  He then said that he did NOT feel it necessary to complete a SLNB due to my age, but he'd leave it up to Dr. Tarhini.  When Dr. Tarhini came in, he explained that he wanted to do the WLE, SLNB and a PET scan.  To say I was floored would be putting it mildly.  Now I'm dealing with something way more involved when I didn't think it was going to be that way.  I didn't prepare myself to hear that information or come with questions, because at no point did anyone or anything hint that someone with my diagnosis would require a SLNB, let alone a PET scan.  Luckily, my mother, a medical assistant, was with me and asked if it was because of my mitotic rate (1).  He said yes, that it was that one thing that concerned him enough to do further testing.  

                                                                                                                                                  After feeling so defeated and depressed the rest of that day, the next morning I woke up and contacted Dr. Tarhini's office.  I left a message stating I wanted further clarification.  His PA called me back and I asked her why they decided on this treatment for me.  She stated that it was to complete staging and determine if I need any additional treatment.  She said that they perform SLNB's on any patient with a melanoma larger that .50mm and/or mitotic rate of 1or >.  (Mine is .59 & 1 mitotic rate.) I don't know that I felt any better after speaking with her but I understood that I wasn't the exception to the rule, for whatever reason, and I guess that calmed me slightly.

                                                                                                                                                  Ultimately, I am conflicted.  I do not want unnecessary surgery or raditation.  However, I do find peace in the fact that after this I will be equipped with the most accurate picture of my prognosis.  One thing that keeps sticking in my mind is the fact that I signed off to be a participant in a study.  It seemed like an okay idea at the time; if I would need additional treatment, I could be entered into trials.  But it gives me pause, because I wonder, even based on the responses I've received on this thread alone, that its a little above and beyond the typical treatment for someone in my shoes.  

                                                                                                                                                   

                                                                                                                                                   

                                                                                                                                                kylez
                                                                                                                                                Participant

                                                                                                                                                  Hi,

                                                                                                                                                  Seeing/"having" an oncologist all of a sudden is a pretty freaky thing. Interestingly, a) I never saw an oncologist with two different stage I skin melanomas. And b), I was not given a PET scan for either one. I *did* have SNBs for both. My first melanoma was 1mm deep, the second was 2mm deep.  

                                                                                                                                                  Psychologically,m it was an impact on me to have the stage I melanomas. But not as big an impact as it would have been if they had sent me to an oncologist. 

                                                                                                                                                  As far as SNB, I'm not a fan of getting surgical procedures that may not be necessary. There is always a risk of infection or other complication. Post-surgery nausea/vomiting is not fun either, which has accompanied every one of mine. At this point I'm happy not to need to get any surgery!!!

                                                                                                                                                  I can't advise who you should give more credence to, your oncologist or surgeon. When I've been super concerned about a decision point like this, I've gotten a second opinion. I realize you have two different opinions already, but from two different specialties, surgery vs. oncology.

                                                                                                                                                  Good luck on your choices and hopefully this is "one and done", no more. Stats are definitely, way on your side.

                                                                                                                                                  slink12
                                                                                                                                                  Participant

                                                                                                                                                    If you want to decrease anxiety, you can use this natural medicine https://www.payspi.org/best-cheap-vape-pens-for-wax-dry-herb-oil/ which really helps 

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