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Nodular melanoma
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Nodular melanoma

› Forums › General Melanoma Community › Nodular melanoma

  • Post
    • July 22, 2015 at 4:18 pm
    mkirkland
    Participant

      My story starts out kind of strange… a few months ago my fiance and I were moving around some furniture when I noticed a flat mole/freckle on his side near the ribs that had started changing colors half way through. I stayed on him to make an apt at his dermatologist and thank god he did. He was diagnosed with stage 1 superficial melanoma. It measured I believe 0.2 mm. We had an apt with the oncologist surgeon and they cut a pretty cut chunk. Well, since then he has been on me to go get this mole on top of my right foot looked at. Well, I finally went in and this week I received my diagnosis… stage 2 malignant nodular melanoma. I was floored when I received this report. I got a copy of my path report and on the report it says it cannot rule out metastasis. My apt w/ the oncologist is not for almost TWO WEEKS. So of course I am curious about others with this diagnosis and how was surgery/treatments? I am scared & nervous but at the same time I have faith that God will see me through whatever course of action we must take. Any feedback would be greatly appreciated!    

    Viewing 8 reply threads
    • Replies
        • July 23, 2015 at 4:32 am
        kathycmc
        Participant

          This is actually my daughter's story.  She was diagnosed with nodular melanoma on her neck in September 2012.  Hers was pretty deep so she was stage IIb.  In October she had a WLE and a SNB which was negative so all was good.  About a month later a nearby lymph node became enlarged and fine needle biopsy showed melanoma. CT scan and brain MRI to make sure no metastasis and onto second surgery in January of 2013 of lymph node dissection.  26 lymph nodes and they were all negative, as well as all the tissue removed, except for the one we already knew about.  So she is stage IIIb.  Choices at that time were wait and see or, and we felt luck it was offerred, biochemotherapy.  This is a pretty difficult treatment but I am still happy she was offerred a systemic treatment.  She finished in April 2013 and has been NED since.  There are a lot more treatment options now but I don't know how many are available for anything less than stage IV.  God will indeed see you through this no matter what.  

          • July 23, 2015 at 4:32 am
          kathycmc
          Participant

            This is actually my daughter's story.  She was diagnosed with nodular melanoma on her neck in September 2012.  Hers was pretty deep so she was stage IIb.  In October she had a WLE and a SNB which was negative so all was good.  About a month later a nearby lymph node became enlarged and fine needle biopsy showed melanoma. CT scan and brain MRI to make sure no metastasis and onto second surgery in January of 2013 of lymph node dissection.  26 lymph nodes and they were all negative, as well as all the tissue removed, except for the one we already knew about.  So she is stage IIIb.  Choices at that time were wait and see or, and we felt luck it was offerred, biochemotherapy.  This is a pretty difficult treatment but I am still happy she was offerred a systemic treatment.  She finished in April 2013 and has been NED since.  There are a lot more treatment options now but I don't know how many are available for anything less than stage IV.  God will indeed see you through this no matter what.  

              • July 23, 2015 at 8:35 pm
              mkirkland
              Participant

                That is so great that she has NED!! I sure hope she stays that way. How old was she when she was diagnosed? I turned 32 about 6 weeks ago and know that this will be something we will have to monitor for the rest of our lives. sad

                 

                • July 23, 2015 at 8:35 pm
                mkirkland
                Participant

                  That is so great that she has NED!! I sure hope she stays that way. How old was she when she was diagnosed? I turned 32 about 6 weeks ago and know that this will be something we will have to monitor for the rest of our lives. sad

                   

                  • July 23, 2015 at 10:10 pm
                  kathycmc
                  Participant

                    She was 24 at the time of diagnosis.  She just had her 27th birthday in June.  She goes every 6 months for CT scan and for skin check.  They used to do scans every 3 months and alternate PET with CT.   Due to her age and how clean her scans have been they moved her to every 6 months early and did away with the PET scan as the amount of radiation is so much higher than the CT scan.  

                    • July 23, 2015 at 10:10 pm
                    kathycmc
                    Participant

                      She was 24 at the time of diagnosis.  She just had her 27th birthday in June.  She goes every 6 months for CT scan and for skin check.  They used to do scans every 3 months and alternate PET with CT.   Due to her age and how clean her scans have been they moved her to every 6 months early and did away with the PET scan as the amount of radiation is so much higher than the CT scan.  

                      • July 23, 2015 at 10:10 pm
                      kathycmc
                      Participant

                        She was 24 at the time of diagnosis.  She just had her 27th birthday in June.  She goes every 6 months for CT scan and for skin check.  They used to do scans every 3 months and alternate PET with CT.   Due to her age and how clean her scans have been they moved her to every 6 months early and did away with the PET scan as the amount of radiation is so much higher than the CT scan.  

                        • July 23, 2015 at 8:35 pm
                        mkirkland
                        Participant

                          That is so great that she has NED!! I sure hope she stays that way. How old was she when she was diagnosed? I turned 32 about 6 weeks ago and know that this will be something we will have to monitor for the rest of our lives. sad

                           

                        • July 23, 2015 at 4:32 am
                        kathycmc
                        Participant

                          This is actually my daughter's story.  She was diagnosed with nodular melanoma on her neck in September 2012.  Hers was pretty deep so she was stage IIb.  In October she had a WLE and a SNB which was negative so all was good.  About a month later a nearby lymph node became enlarged and fine needle biopsy showed melanoma. CT scan and brain MRI to make sure no metastasis and onto second surgery in January of 2013 of lymph node dissection.  26 lymph nodes and they were all negative, as well as all the tissue removed, except for the one we already knew about.  So she is stage IIIb.  Choices at that time were wait and see or, and we felt luck it was offerred, biochemotherapy.  This is a pretty difficult treatment but I am still happy she was offerred a systemic treatment.  She finished in April 2013 and has been NED since.  There are a lot more treatment options now but I don't know how many are available for anything less than stage IV.  God will indeed see you through this no matter what.  

                          • July 23, 2015 at 8:03 am
                          stars
                          Participant

                            I'm so sorry to hear you have joined our club. Much as we all support each other, I think we would all rather have never been diagnosed with melanoma! What a weird coincidence that your boyfriend and yourself were both diagnosed in such a short space of time and in this roundabout manner. Look, you are doing all you can do – you've had your initial treatment and you'll now see a specialist. That's a great start. I can imagine there'll be plenty of monitoring in your future, no matter what the results are from the oncologist appointment. I've never been quite in your situation but I do know that fairly consistently, those in the know will say 1) go to a melanoma centre, not just any old cancer centre 2) get a second opinion. This website has a 'find a treatment centre' tool – here's the link:

                            http://mrf.findmytreatmentcenter.com/

                            This could also serve as your second opinion. I'm not familiar at all with the USA healthcare system but I'm sure other MRFers can fill you in on what you need to know. Stay strong and take this very seriously – there's plenty of hope and great statistics for you, but you have just joined a club where vigilance and follow up is key. Don't expect anyone else to be doing the thinking for you!

                              • July 23, 2015 at 8:41 pm
                              mkirkland
                              Participant

                                Thank you. I live about 5 hours away from MD Anderson. I believe it is a pretty reputable place so I may do some more research and look into obtaining a second opinion from them. I think that it is just starting to sink in that this will be a life long battle even if we cure it this go round. frown  I turned 32 about 6 weeks ago and although I know cancer does not discriminate, I just didn't think it would come so young.  

                                 

                                • July 23, 2015 at 8:41 pm
                                mkirkland
                                Participant

                                  Thank you. I live about 5 hours away from MD Anderson. I believe it is a pretty reputable place so I may do some more research and look into obtaining a second opinion from them. I think that it is just starting to sink in that this will be a life long battle even if we cure it this go round. frown  I turned 32 about 6 weeks ago and although I know cancer does not discriminate, I just didn't think it would come so young.  

                                   

                                  • July 23, 2015 at 8:41 pm
                                  mkirkland
                                  Participant

                                    Thank you. I live about 5 hours away from MD Anderson. I believe it is a pretty reputable place so I may do some more research and look into obtaining a second opinion from them. I think that it is just starting to sink in that this will be a life long battle even if we cure it this go round. frown  I turned 32 about 6 weeks ago and although I know cancer does not discriminate, I just didn't think it would come so young.  

                                     

                                  • July 23, 2015 at 8:03 am
                                  stars
                                  Participant

                                    I'm so sorry to hear you have joined our club. Much as we all support each other, I think we would all rather have never been diagnosed with melanoma! What a weird coincidence that your boyfriend and yourself were both diagnosed in such a short space of time and in this roundabout manner. Look, you are doing all you can do – you've had your initial treatment and you'll now see a specialist. That's a great start. I can imagine there'll be plenty of monitoring in your future, no matter what the results are from the oncologist appointment. I've never been quite in your situation but I do know that fairly consistently, those in the know will say 1) go to a melanoma centre, not just any old cancer centre 2) get a second opinion. This website has a 'find a treatment centre' tool – here's the link:

                                    http://mrf.findmytreatmentcenter.com/

                                    This could also serve as your second opinion. I'm not familiar at all with the USA healthcare system but I'm sure other MRFers can fill you in on what you need to know. Stay strong and take this very seriously – there's plenty of hope and great statistics for you, but you have just joined a club where vigilance and follow up is key. Don't expect anyone else to be doing the thinking for you!

                                    • July 23, 2015 at 8:03 am
                                    stars
                                    Participant

                                      I'm so sorry to hear you have joined our club. Much as we all support each other, I think we would all rather have never been diagnosed with melanoma! What a weird coincidence that your boyfriend and yourself were both diagnosed in such a short space of time and in this roundabout manner. Look, you are doing all you can do – you've had your initial treatment and you'll now see a specialist. That's a great start. I can imagine there'll be plenty of monitoring in your future, no matter what the results are from the oncologist appointment. I've never been quite in your situation but I do know that fairly consistently, those in the know will say 1) go to a melanoma centre, not just any old cancer centre 2) get a second opinion. This website has a 'find a treatment centre' tool – here's the link:

                                      http://mrf.findmytreatmentcenter.com/

                                      This could also serve as your second opinion. I'm not familiar at all with the USA healthcare system but I'm sure other MRFers can fill you in on what you need to know. Stay strong and take this very seriously – there's plenty of hope and great statistics for you, but you have just joined a club where vigilance and follow up is key. Don't expect anyone else to be doing the thinking for you!

                                      • July 23, 2015 at 12:54 pm
                                      A
                                      Participant

                                        I am very sorry about your diagnosis! Hope your SNB will be negative and it will stay as Stage 2. 
                                        Are you treated at the major cancer center/specialized in melanoma? I also wonder how your melanoma looked like.

                                        • July 23, 2015 at 12:54 pm
                                        A
                                        Participant

                                          I am very sorry about your diagnosis! Hope your SNB will be negative and it will stay as Stage 2. 
                                          Are you treated at the major cancer center/specialized in melanoma? I also wonder how your melanoma looked like.

                                          • July 23, 2015 at 12:54 pm
                                          A
                                          Participant

                                            I am very sorry about your diagnosis! Hope your SNB will be negative and it will stay as Stage 2. 
                                            Are you treated at the major cancer center/specialized in melanoma? I also wonder how your melanoma looked like.

                                              • July 23, 2015 at 8:50 pm
                                              mkirkland
                                              Participant

                                                Thank you. I am very much praying that it does also. My apt is not at a major cancer center. I am beginning to think that is probably where I should be trying to head. I live about 5 hours from MD Anderson which I believe is one of the best. To me it looked like a normal light tan/brown round mole. There really wasn't anything odd about it like the things they tell you to look for with skin cancer. The things on my path report that worry me are they used the comment "at least 1.5mm" this and "at least level III". I no longer like the word at least! 🙂

                                                • July 23, 2015 at 8:50 pm
                                                mkirkland
                                                Participant

                                                  Thank you. I am very much praying that it does also. My apt is not at a major cancer center. I am beginning to think that is probably where I should be trying to head. I live about 5 hours from MD Anderson which I believe is one of the best. To me it looked like a normal light tan/brown round mole. There really wasn't anything odd about it like the things they tell you to look for with skin cancer. The things on my path report that worry me are they used the comment "at least 1.5mm" this and "at least level III". I no longer like the word at least! 🙂

                                                  • July 23, 2015 at 8:50 pm
                                                  mkirkland
                                                  Participant

                                                    Thank you. I am very much praying that it does also. My apt is not at a major cancer center. I am beginning to think that is probably where I should be trying to head. I live about 5 hours from MD Anderson which I believe is one of the best. To me it looked like a normal light tan/brown round mole. There really wasn't anything odd about it like the things they tell you to look for with skin cancer. The things on my path report that worry me are they used the comment "at least 1.5mm" this and "at least level III". I no longer like the word at least! 🙂

                                                    • July 23, 2015 at 9:05 pm
                                                    stars
                                                    Participant

                                                      MD Anderson sounds great. I'm not from the USA but I have definitly heard that name. Get there, pronto! Yes, melanoma is serious- but more and more treatments are coming out, its an amazing time in melanoma research and treatment. I guess we all have a lifetime fight, but I prefer to think of it as lifelong vigilance – my wish for you is quick  treatment then good quality monitoring so you can go back to your normal life. Melanoma or any serious illness can sometimes be a blessing in disguise that makes us focus on what's important in our lives (though like I said earlier, I'd rather not have it!). Go to your normal appointment but give MD Anderson a call as well and perhaps make a transition (or perhaps see both/share care?). I also felt too young to get cancer… And I'm much older than you;) melanoma is one of the few cancers to hit young adults. My last mel also didn't really look like a mel… Very scary how they can look so innocent. 

                                                      • July 23, 2015 at 9:05 pm
                                                      stars
                                                      Participant

                                                        MD Anderson sounds great. I'm not from the USA but I have definitly heard that name. Get there, pronto! Yes, melanoma is serious- but more and more treatments are coming out, its an amazing time in melanoma research and treatment. I guess we all have a lifetime fight, but I prefer to think of it as lifelong vigilance – my wish for you is quick  treatment then good quality monitoring so you can go back to your normal life. Melanoma or any serious illness can sometimes be a blessing in disguise that makes us focus on what's important in our lives (though like I said earlier, I'd rather not have it!). Go to your normal appointment but give MD Anderson a call as well and perhaps make a transition (or perhaps see both/share care?). I also felt too young to get cancer… And I'm much older than you;) melanoma is one of the few cancers to hit young adults. My last mel also didn't really look like a mel… Very scary how they can look so innocent. 

                                                        • July 23, 2015 at 9:05 pm
                                                        stars
                                                        Participant

                                                          MD Anderson sounds great. I'm not from the USA but I have definitly heard that name. Get there, pronto! Yes, melanoma is serious- but more and more treatments are coming out, its an amazing time in melanoma research and treatment. I guess we all have a lifetime fight, but I prefer to think of it as lifelong vigilance – my wish for you is quick  treatment then good quality monitoring so you can go back to your normal life. Melanoma or any serious illness can sometimes be a blessing in disguise that makes us focus on what's important in our lives (though like I said earlier, I'd rather not have it!). Go to your normal appointment but give MD Anderson a call as well and perhaps make a transition (or perhaps see both/share care?). I also felt too young to get cancer… And I'm much older than you;) melanoma is one of the few cancers to hit young adults. My last mel also didn't really look like a mel… Very scary how they can look so innocent. 

                                                          • July 24, 2015 at 1:33 am
                                                          Janner
                                                          Participant

                                                            "At least" means the biopsy didn't get clean deep margins.  It also means you'll never know the exact depth because the biopsy wasn't deep enough.  Run to MDA, it's worth it to get the specialsts opinion up front.  Also good to establish a relationship there in case something happens in the future.

                                                            • July 24, 2015 at 1:33 am
                                                            Janner
                                                            Participant

                                                              "At least" means the biopsy didn't get clean deep margins.  It also means you'll never know the exact depth because the biopsy wasn't deep enough.  Run to MDA, it's worth it to get the specialsts opinion up front.  Also good to establish a relationship there in case something happens in the future.

                                                              • July 24, 2015 at 1:33 am
                                                              Janner
                                                              Participant

                                                                "At least" means the biopsy didn't get clean deep margins.  It also means you'll never know the exact depth because the biopsy wasn't deep enough.  Run to MDA, it's worth it to get the specialsts opinion up front.  Also good to establish a relationship there in case something happens in the future.

                                                                • July 28, 2015 at 11:18 pm
                                                                DianaD
                                                                Participant

                                                                  Hello, I live in the U.S., and I have done cancer research for friends and family who have received a cancer diagnosis.  I believe that you can self-refer (call and make your own appointment or make an appointment on-line), at M.D. Anderson, without waiting for a referral from another physician.  If I were in your situation, I would make the appointment with MDA now and not wait.  Good luck.  

                                                                  • July 28, 2015 at 11:18 pm
                                                                  DianaD
                                                                  Participant

                                                                    Hello, I live in the U.S., and I have done cancer research for friends and family who have received a cancer diagnosis.  I believe that you can self-refer (call and make your own appointment or make an appointment on-line), at M.D. Anderson, without waiting for a referral from another physician.  If I were in your situation, I would make the appointment with MDA now and not wait.  Good luck.  

                                                                    • July 28, 2015 at 11:18 pm
                                                                    DianaD
                                                                    Participant

                                                                      Hello, I live in the U.S., and I have done cancer research for friends and family who have received a cancer diagnosis.  I believe that you can self-refer (call and make your own appointment or make an appointment on-line), at M.D. Anderson, without waiting for a referral from another physician.  If I were in your situation, I would make the appointment with MDA now and not wait.  Good luck.  

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