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Newly diagnosed

Forums General Melanoma Community Newly diagnosed

  • Post
    laulamb
    Participant

      On Friday I was told I have a Clark III Maligant Melanoma, superficial spreading type.  I have an appointment with a surgeon on Tuesday and an appointment with an oncologist on 4/12.  I am really scared.  I am scared about the cancer spreading elsewhere.  And advice or knowledge is welcomed.  I have 4 beautiful children:  15,13,11 and 7 and I am not ready to leave them.  

    Viewing 11 reply threads
    • Replies
        Sce1
        Participant

          Hello

          I do not have much experience of melanoma. My son who is 6 is currently undergoing some investigations. I wanted to post simply to say hang in there as you will find support and advice on this page. As no one has yet commented I wanted too just let you know that someone is here. It may be of no help but I didn't want you to feel alone like none of us are here. The other people on this forum will have detailed information for you but I wanted to say, be kind to yourself,  you've had a terrible shock. Reading on here regularly there are so many new treatments in the past 5 years that your chances are better than  ever. Also,  I've seen the others say this before … do not look at survival stats etc … They are mostly out of date and rates are so much better I  the last years.

          Best wishes

          S xxxx 

           

            laulamb
            Participant

              Thank you for your support, it is much appreciated.  

              laulamb
              Participant

                Thank you for your support, it is much appreciated.  

                laulamb
                Participant

                  Thank you for your support, it is much appreciated.  

                Sce1
                Participant

                  Hello

                  I do not have much experience of melanoma. My son who is 6 is currently undergoing some investigations. I wanted to post simply to say hang in there as you will find support and advice on this page. As no one has yet commented I wanted too just let you know that someone is here. It may be of no help but I didn't want you to feel alone like none of us are here. The other people on this forum will have detailed information for you but I wanted to say, be kind to yourself,  you've had a terrible shock. Reading on here regularly there are so many new treatments in the past 5 years that your chances are better than  ever. Also,  I've seen the others say this before … do not look at survival stats etc … They are mostly out of date and rates are so much better I  the last years.

                  Best wishes

                  S xxxx 

                   

                  Sce1
                  Participant

                    Hello

                    I do not have much experience of melanoma. My son who is 6 is currently undergoing some investigations. I wanted to post simply to say hang in there as you will find support and advice on this page. As no one has yet commented I wanted too just let you know that someone is here. It may be of no help but I didn't want you to feel alone like none of us are here. The other people on this forum will have detailed information for you but I wanted to say, be kind to yourself,  you've had a terrible shock. Reading on here regularly there are so many new treatments in the past 5 years that your chances are better than  ever. Also,  I've seen the others say this before … do not look at survival stats etc … They are mostly out of date and rates are so much better I  the last years.

                    Best wishes

                    S xxxx 

                     

                    Polymath
                    Participant

                      The best advice I ever got from this board was to immediately get under the care of a melanoma specialist at a major hospital/medical facility.  Your regular oncologist simply won't due.  The best piece of personal advice I can give is to try and be normal.  For the sake of your family, the more normal you appear, the less stress and fear will consume you all.  I had three surgeries in my first year after diagnosis.  Each time I got up the next morning and drove my daughter to school as usual.  Sooner or later they will understand, but for every ones sake do your best to just live as normally as possible and don't dwell on the disease. New treatments have come a long way and you can beat this.

                      Aloha, Gary

                       

                       

                      Polymath
                      Participant

                        The best advice I ever got from this board was to immediately get under the care of a melanoma specialist at a major hospital/medical facility.  Your regular oncologist simply won't due.  The best piece of personal advice I can give is to try and be normal.  For the sake of your family, the more normal you appear, the less stress and fear will consume you all.  I had three surgeries in my first year after diagnosis.  Each time I got up the next morning and drove my daughter to school as usual.  Sooner or later they will understand, but for every ones sake do your best to just live as normally as possible and don't dwell on the disease. New treatments have come a long way and you can beat this.

                        Aloha, Gary

                         

                         

                        Polymath
                        Participant

                          The best advice I ever got from this board was to immediately get under the care of a melanoma specialist at a major hospital/medical facility.  Your regular oncologist simply won't due.  The best piece of personal advice I can give is to try and be normal.  For the sake of your family, the more normal you appear, the less stress and fear will consume you all.  I had three surgeries in my first year after diagnosis.  Each time I got up the next morning and drove my daughter to school as usual.  Sooner or later they will understand, but for every ones sake do your best to just live as normally as possible and don't dwell on the disease. New treatments have come a long way and you can beat this.

                          Aloha, Gary

                           

                           

                          mrsaxde
                          Participant

                            I just saw your post and wanted to send you some positive thoughts and encouragement. I understand what you're saying about your children and not wanting to leave them. I have a beautiful granddaughter who is almost 3, and another grandchild on the way.

                            I was diagnosed in January 2013 after my family practice doctor removed a mole from my back that he didn't think was anything serious. After a wide area excision and sentinel lymph node biopsy I also had a lymph node dissection in my left armpit. Everything came back negative from that, and I was pronounced cancer free. In August 2014 three lumps I had noticed near the excision turned out to be melanoma, and I underwent more surgery. Almost immediately after that, more spots turned up near the excision site, and a PET scan revealed a small nodule in one lung. My oncologist started me on Yervoy (ipilimumab) in November 2014.

                            Yervoy slowed the development of my disease, but within a few months of the end of that treatment, I discovered more small spots developing on my skin. Last July I started receiving Keytruda.

                            I know this doesn't sound super positive so far. 🙂 It gets better….

                            After just one infusion of Keytruda we noticed the spots on my skin were getting smaller, lighter, and thinner. A CT scan revealed that the spots in my lung were also slightly smaller. My last CT, on New Year's Eve, indicated that everything was stable. No shrinkage, but no growth either, and nothing new. I go back for another scan on April 13, and I'm hoping that I'll get more good news. I'd prefer to hear that things are shrinking again, but I'll be happy if everything continues to be stable.

                            So keep your chin up. We are very fortunate that there are now treatments out there for a disease that didn't have many treatments not too long ago. I'm gonna make it, I've made it over three years now since my initial diagnosis at Stage IIIa. And if you need support, don't be afraid to come to this forum and share your thoughts with everybody. I don't check in here all the time, but I've found that when I've needed support this is a great place to find it.

                            My best to you!

                            -Bill

                            mrsaxde
                            Participant

                              I just saw your post and wanted to send you some positive thoughts and encouragement. I understand what you're saying about your children and not wanting to leave them. I have a beautiful granddaughter who is almost 3, and another grandchild on the way.

                              I was diagnosed in January 2013 after my family practice doctor removed a mole from my back that he didn't think was anything serious. After a wide area excision and sentinel lymph node biopsy I also had a lymph node dissection in my left armpit. Everything came back negative from that, and I was pronounced cancer free. In August 2014 three lumps I had noticed near the excision turned out to be melanoma, and I underwent more surgery. Almost immediately after that, more spots turned up near the excision site, and a PET scan revealed a small nodule in one lung. My oncologist started me on Yervoy (ipilimumab) in November 2014.

                              Yervoy slowed the development of my disease, but within a few months of the end of that treatment, I discovered more small spots developing on my skin. Last July I started receiving Keytruda.

                              I know this doesn't sound super positive so far. 🙂 It gets better….

                              After just one infusion of Keytruda we noticed the spots on my skin were getting smaller, lighter, and thinner. A CT scan revealed that the spots in my lung were also slightly smaller. My last CT, on New Year's Eve, indicated that everything was stable. No shrinkage, but no growth either, and nothing new. I go back for another scan on April 13, and I'm hoping that I'll get more good news. I'd prefer to hear that things are shrinking again, but I'll be happy if everything continues to be stable.

                              So keep your chin up. We are very fortunate that there are now treatments out there for a disease that didn't have many treatments not too long ago. I'm gonna make it, I've made it over three years now since my initial diagnosis at Stage IIIa. And if you need support, don't be afraid to come to this forum and share your thoughts with everybody. I don't check in here all the time, but I've found that when I've needed support this is a great place to find it.

                              My best to you!

                              -Bill

                              mrsaxde
                              Participant

                                I just saw your post and wanted to send you some positive thoughts and encouragement. I understand what you're saying about your children and not wanting to leave them. I have a beautiful granddaughter who is almost 3, and another grandchild on the way.

                                I was diagnosed in January 2013 after my family practice doctor removed a mole from my back that he didn't think was anything serious. After a wide area excision and sentinel lymph node biopsy I also had a lymph node dissection in my left armpit. Everything came back negative from that, and I was pronounced cancer free. In August 2014 three lumps I had noticed near the excision turned out to be melanoma, and I underwent more surgery. Almost immediately after that, more spots turned up near the excision site, and a PET scan revealed a small nodule in one lung. My oncologist started me on Yervoy (ipilimumab) in November 2014.

                                Yervoy slowed the development of my disease, but within a few months of the end of that treatment, I discovered more small spots developing on my skin. Last July I started receiving Keytruda.

                                I know this doesn't sound super positive so far. 🙂 It gets better….

                                After just one infusion of Keytruda we noticed the spots on my skin were getting smaller, lighter, and thinner. A CT scan revealed that the spots in my lung were also slightly smaller. My last CT, on New Year's Eve, indicated that everything was stable. No shrinkage, but no growth either, and nothing new. I go back for another scan on April 13, and I'm hoping that I'll get more good news. I'd prefer to hear that things are shrinking again, but I'll be happy if everything continues to be stable.

                                So keep your chin up. We are very fortunate that there are now treatments out there for a disease that didn't have many treatments not too long ago. I'm gonna make it, I've made it over three years now since my initial diagnosis at Stage IIIa. And if you need support, don't be afraid to come to this forum and share your thoughts with everybody. I don't check in here all the time, but I've found that when I've needed support this is a great place to find it.

                                My best to you!

                                -Bill

                                casagrayson
                                Participant

                                  Welcome, and sorry you have to be here!  My first suggestion is to try and not stress — I know that isn't easy, but chances are you have caught this very early and you will get it excised and then never have to think about melanoma again.

                                  Clark's Level III means that the lesion is completely contained within the skin … not down to fat or muscle levels.  A more important data point would be the depth of the lesion.  If you don't already have it, you need to get a copy of the pathology report to keep for your records.  Once you get that you can post more detail here and more folks can tell you what to expect.  Basically, if the lesion is less than 1mm, and there is not mitosis or ulceration, you will simply need a Wide Local Excision (WLE).  You would be classified as a Stage I patient, and no other procedures or tests would be required.  If it is deeper than 1mm, or with mitosis, you will need a Sentinel Node Biopsy (SNB) done *before* the WLE to make sure no cells have made their way into your lymphatic system.  Unless the SNB comes back with melanoma cells present (which would move you to Stage III melanoma) there is really nothing that an oncologist would do for you.

                                  More than likely, this is a shallow melanoma, and although the surgical excision will be large to get wide margins, once it is excised you will be done.  No scans, no xrays, no treatments.  Just more frequent full body checks by your dermtologist.  Hang in there, and let us know about the pathology report.

                                  casagrayson
                                  Participant

                                    Welcome, and sorry you have to be here!  My first suggestion is to try and not stress — I know that isn't easy, but chances are you have caught this very early and you will get it excised and then never have to think about melanoma again.

                                    Clark's Level III means that the lesion is completely contained within the skin … not down to fat or muscle levels.  A more important data point would be the depth of the lesion.  If you don't already have it, you need to get a copy of the pathology report to keep for your records.  Once you get that you can post more detail here and more folks can tell you what to expect.  Basically, if the lesion is less than 1mm, and there is not mitosis or ulceration, you will simply need a Wide Local Excision (WLE).  You would be classified as a Stage I patient, and no other procedures or tests would be required.  If it is deeper than 1mm, or with mitosis, you will need a Sentinel Node Biopsy (SNB) done *before* the WLE to make sure no cells have made their way into your lymphatic system.  Unless the SNB comes back with melanoma cells present (which would move you to Stage III melanoma) there is really nothing that an oncologist would do for you.

                                    More than likely, this is a shallow melanoma, and although the surgical excision will be large to get wide margins, once it is excised you will be done.  No scans, no xrays, no treatments.  Just more frequent full body checks by your dermtologist.  Hang in there, and let us know about the pathology report.

                                      laulamb
                                      Participant

                                        Susan,

                                        Thank you so much for your information!!  You have just brought a sigh to relief to me!! 

                                        The pathology reports says

                                        Malignant Melanoma, superficial spreading type

                                        *tumor is 1.3mm in maximum thickness

                                        *tumor is .3 cm in maximum dimension

                                        *Clark III

                                        *Tumor cells present at deep margin

                                        *Mitotic rate = 0-1/mm2

                                        Brisk lumphocytic inflammatory response

                                        AJCC Pathologic Stage: pT2a, pNX

                                         

                                        Thank you all so much for your kind words and support!!  What a wonderful group of people we have here!  I will fight this, I need to fight this, my kids are my world.

                                        My appointment with the surgeon is 4/5 at 8 am … I will keep everyone informed.

                                        God Bless

                                        Laura

                                        laulamb
                                        Participant

                                          Susan,

                                          Thank you so much for your information!!  You have just brought a sigh to relief to me!! 

                                          The pathology reports says

                                          Malignant Melanoma, superficial spreading type

                                          *tumor is 1.3mm in maximum thickness

                                          *tumor is .3 cm in maximum dimension

                                          *Clark III

                                          *Tumor cells present at deep margin

                                          *Mitotic rate = 0-1/mm2

                                          Brisk lumphocytic inflammatory response

                                          AJCC Pathologic Stage: pT2a, pNX

                                           

                                          Thank you all so much for your kind words and support!!  What a wonderful group of people we have here!  I will fight this, I need to fight this, my kids are my world.

                                          My appointment with the surgeon is 4/5 at 8 am … I will keep everyone informed.

                                          God Bless

                                          Laura

                                          casagrayson
                                          Participant

                                            Laura, based on this pathology report I would say that your surgeon is going to recommend the SNB followed by the WLE.  That will give you the most amount of information.  Hopefully the node will be negative … and that will be that!!  Do keep us informed — we're rooting for you!

                                            casagrayson
                                            Participant

                                              Laura, based on this pathology report I would say that your surgeon is going to recommend the SNB followed by the WLE.  That will give you the most amount of information.  Hopefully the node will be negative … and that will be that!!  Do keep us informed — we're rooting for you!

                                              casagrayson
                                              Participant

                                                Laura, based on this pathology report I would say that your surgeon is going to recommend the SNB followed by the WLE.  That will give you the most amount of information.  Hopefully the node will be negative … and that will be that!!  Do keep us informed — we're rooting for you!

                                                laulamb
                                                Participant

                                                  Susan, thank you so much, my appointment is in 13.5 hours and it can't get here soon enough.  

                                                  I will keep you informed 

                                                  laulamb
                                                  Participant

                                                    Susan, thank you so much, my appointment is in 13.5 hours and it can't get here soon enough.  

                                                    I will keep you informed 

                                                    laulamb
                                                    Participant

                                                      Susan, thank you so much, my appointment is in 13.5 hours and it can't get here soon enough.  

                                                      I will keep you informed 

                                                      laulamb
                                                      Participant

                                                        Susan,

                                                        Yes the surgeon is going to do a WLE and he said he will inject dye into the area to see if the dye moves to the lymph nodes.  He said with my tumor being 1.3mm they go back on forth what to do but he believes he should check the lymph nodes and I agree.  My surgery is scheduled for 4/18 but an appointment may open up on 4/14, they will call me today.  I am praying for clear lymph nodes!! 

                                                        laulamb
                                                        Participant

                                                          Susan,

                                                          Yes the surgeon is going to do a WLE and he said he will inject dye into the area to see if the dye moves to the lymph nodes.  He said with my tumor being 1.3mm they go back on forth what to do but he believes he should check the lymph nodes and I agree.  My surgery is scheduled for 4/18 but an appointment may open up on 4/14, they will call me today.  I am praying for clear lymph nodes!! 

                                                          laulamb
                                                          Participant

                                                            Susan,

                                                            Yes the surgeon is going to do a WLE and he said he will inject dye into the area to see if the dye moves to the lymph nodes.  He said with my tumor being 1.3mm they go back on forth what to do but he believes he should check the lymph nodes and I agree.  My surgery is scheduled for 4/18 but an appointment may open up on 4/14, they will call me today.  I am praying for clear lymph nodes!! 

                                                            laulamb
                                                            Participant

                                                              Also, I have an appointment scheduled with our local oncologist on 4/12.  I am going to keep this appointment but if the surgery should show that the lymph nodes have been infected then from all I have been reading, I believe I should see a melanoma oncologist.  Do you not agree?

                                                              jennunicorn
                                                              Participant

                                                                There isn't much an oncologist can tell you before your surgey, onoclogists (melanoma or not) are there for treatment. So, depending on your lymph node biopsy outcome, you may or may not need treatment. Over 1mm you would definitely get a SLNB, they do the WLE and SLNB during the same surgery. If the lymph nodes are positive, yes, you would definitely want a melanoma specialist moving forward as they will know the very best and latest treatment options and just generally know a lot more about melanoma than a general oncologist. 

                                                                Hopefully the lymph nodes are not involved. Sending good thoughts your way!

                                                                jennunicorn
                                                                Participant

                                                                  There isn't much an oncologist can tell you before your surgey, onoclogists (melanoma or not) are there for treatment. So, depending on your lymph node biopsy outcome, you may or may not need treatment. Over 1mm you would definitely get a SLNB, they do the WLE and SLNB during the same surgery. If the lymph nodes are positive, yes, you would definitely want a melanoma specialist moving forward as they will know the very best and latest treatment options and just generally know a lot more about melanoma than a general oncologist. 

                                                                  Hopefully the lymph nodes are not involved. Sending good thoughts your way!

                                                                  jennunicorn
                                                                  Participant

                                                                    There isn't much an oncologist can tell you before your surgey, onoclogists (melanoma or not) are there for treatment. So, depending on your lymph node biopsy outcome, you may or may not need treatment. Over 1mm you would definitely get a SLNB, they do the WLE and SLNB during the same surgery. If the lymph nodes are positive, yes, you would definitely want a melanoma specialist moving forward as they will know the very best and latest treatment options and just generally know a lot more about melanoma than a general oncologist. 

                                                                    Hopefully the lymph nodes are not involved. Sending good thoughts your way!

                                                                    casagrayson
                                                                    Participant

                                                                      Jenn answered before I saw this post!  Yes, if the nodes are positive I would not bother with a general oncologist.  So much is happening in the world of melanoma treatments right now that only a specialist is going to have access to and knowledge of the latest and greatest.  

                                                                      Right now we'll pray for no lymph node involvement!

                                                                      laulamb
                                                                      Participant

                                                                        Thank you Susan!  I am prayer for no lymph node involvement.  Thank you all for your support. 

                                                                        laulamb
                                                                        Participant

                                                                          Thank you Susan!  I am prayer for no lymph node involvement.  Thank you all for your support. 

                                                                          laulamb
                                                                          Participant

                                                                            Thank you Susan!  I am prayer for no lymph node involvement.  Thank you all for your support. 

                                                                            casagrayson
                                                                            Participant

                                                                              Jenn answered before I saw this post!  Yes, if the nodes are positive I would not bother with a general oncologist.  So much is happening in the world of melanoma treatments right now that only a specialist is going to have access to and knowledge of the latest and greatest.  

                                                                              Right now we'll pray for no lymph node involvement!

                                                                              casagrayson
                                                                              Participant

                                                                                Jenn answered before I saw this post!  Yes, if the nodes are positive I would not bother with a general oncologist.  So much is happening in the world of melanoma treatments right now that only a specialist is going to have access to and knowledge of the latest and greatest.  

                                                                                Right now we'll pray for no lymph node involvement!

                                                                                laulamb
                                                                                Participant

                                                                                  Also, I have an appointment scheduled with our local oncologist on 4/12.  I am going to keep this appointment but if the surgery should show that the lymph nodes have been infected then from all I have been reading, I believe I should see a melanoma oncologist.  Do you not agree?

                                                                                  laulamb
                                                                                  Participant

                                                                                    Also, I have an appointment scheduled with our local oncologist on 4/12.  I am going to keep this appointment but if the surgery should show that the lymph nodes have been infected then from all I have been reading, I believe I should see a melanoma oncologist.  Do you not agree?

                                                                                    laulamb
                                                                                    Participant

                                                                                      Susan,

                                                                                      Thank you so much for your information!!  You have just brought a sigh to relief to me!! 

                                                                                      The pathology reports says

                                                                                      Malignant Melanoma, superficial spreading type

                                                                                      *tumor is 1.3mm in maximum thickness

                                                                                      *tumor is .3 cm in maximum dimension

                                                                                      *Clark III

                                                                                      *Tumor cells present at deep margin

                                                                                      *Mitotic rate = 0-1/mm2

                                                                                      Brisk lumphocytic inflammatory response

                                                                                      AJCC Pathologic Stage: pT2a, pNX

                                                                                       

                                                                                      Thank you all so much for your kind words and support!!  What a wonderful group of people we have here!  I will fight this, I need to fight this, my kids are my world.

                                                                                      My appointment with the surgeon is 4/5 at 8 am … I will keep everyone informed.

                                                                                      God Bless

                                                                                      Laura

                                                                                    casagrayson
                                                                                    Participant

                                                                                      Welcome, and sorry you have to be here!  My first suggestion is to try and not stress — I know that isn't easy, but chances are you have caught this very early and you will get it excised and then never have to think about melanoma again.

                                                                                      Clark's Level III means that the lesion is completely contained within the skin … not down to fat or muscle levels.  A more important data point would be the depth of the lesion.  If you don't already have it, you need to get a copy of the pathology report to keep for your records.  Once you get that you can post more detail here and more folks can tell you what to expect.  Basically, if the lesion is less than 1mm, and there is not mitosis or ulceration, you will simply need a Wide Local Excision (WLE).  You would be classified as a Stage I patient, and no other procedures or tests would be required.  If it is deeper than 1mm, or with mitosis, you will need a Sentinel Node Biopsy (SNB) done *before* the WLE to make sure no cells have made their way into your lymphatic system.  Unless the SNB comes back with melanoma cells present (which would move you to Stage III melanoma) there is really nothing that an oncologist would do for you.

                                                                                      More than likely, this is a shallow melanoma, and although the surgical excision will be large to get wide margins, once it is excised you will be done.  No scans, no xrays, no treatments.  Just more frequent full body checks by your dermtologist.  Hang in there, and let us know about the pathology report.

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