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So I wasn’t told the whole truth…

Forums General Melanoma Community So I wasn’t told the whole truth…

  • Post
    Suzan AB
    Participant

      Is anyone else getting the half-truth from your melanoma expert?  My doctor recently said that my type of mestastic melanoma is nodular melanoma and it is the most treatable kind there is…blah, blah, blah…Seen two ono doctors in this field and I was just told last Friday that my Malignant Melanoma is nodular…

      Is anyone else getting the half-truth from your melanoma expert?  My doctor recently said that my type of mestastic melanoma is nodular melanoma and it is the most treatable kind there is…blah, blah, blah…Seen two ono doctors in this field and I was just told last Friday that my Malignant Melanoma is nodular…

      Question…is there a study being done regarding partial disclosure to the patient vs. total disclosure and survival?  I got nodes popping up with ok, lets see if we can get you into this study…no worries, you can wait….I am so confused!  I need advice from people who are going to tell me the truth about my health so I can make an informed decision not use me like some sort of lab rat…

      Warriors please advise…

      This is what I found on Nodular melanoma(NM) is the most aggressive form of melanoma. It tends to grow more rapidly in thickness (penetrate the skin) than in diameter. Instead of arising from a pre-existing mole, it may appear in a spot where a lesion did not previously exist. Since NM tends to grow in depth more quickly than it does in width, and can occur in a place that did not have a previous lesion, the prognosis is often worse because it takes longer for a person to be aware of the changes. NM is most often darkly pigmented; however, some NM lesions can be light brown, multicolored or even colorless (non-pigmented). A light-colored or non-pigmented NM lesion may escape detection because the appearance is not alarming, however an ulcerated and/or bleeding lesion is common. [1]:696Polypoid melanomais a virulent variant of nodular melanoma.[1]:696

    Viewing 5 reply threads
    • Replies
        Rebecca and Bob
        Participant

          My husband's melanoma was nodular colorless, which was missed by the GP and derm. Neither thought is was melanoma, that is why it's so dangerous because by the time it's found it's often very late.

          I don't know about most treatable. My husband was Stage III in Jan 2007 then advanced to Stage IV in 2008. I felt it was quick moving. He did IL-2 and surgery and he's been NED for two years.

          I do feel you need an agressive team of melanoma specialist not people standing around waiting for stuff to happen to you, that would just agravate me. I had my husband signed up to go talk to 3 different melanoma specialist to decide what we should do.

          Good luck, I feel your frustration. I don't know you your seeing but husband went to NIH, UVA and Johns Hopkins and we stayed with NIH once he was in.

           

          Rebecca

           

            Lisa13
            Participant

              I was diagnosed with nodular melanoma in January 2011 and progressed to Stage 4 this month.  I was midiagnosed by my dermatologist last October who said it was a sebaceous cyst!  Needless to say for almost 4 months, that thing continued to grow vertical into blood stream.  

              Nodular melanoma is the most agressive because it grows quickly and vertically. Mine was a small bump for a few months and I didn't think anything of it since I thought I knew the markings of melanoma. Turns out I didn't know it could be a bump.

              I'm starting chemo as I have to do a first line of treatment for it before I do something else. I'm very upset because this is not agressive enough to me.

              Lisa

              LynnLuc
              Participant

                Curious as to what chemo they are starting you on…They put me on temodar and did radiation first…but that was the extent of the chemo I allowed them to do. I didn't want them killing my immune system when everything I read said I needed to boost it.

                I later had surgery and I am in a vaccine trial. Did twelve weeks and now getting MDX 1106 ( Anti-PD-1) every 3 months for at least 2 years. NED 15 months so far. I had melanoma in my right paratracheal lymph node – 6.8 centimeters large. It  the early 1990's it begun as a freckle on my neck, came back as a dark purple eraser in the same place. It was removed  in 2000 and came back in 2009 kissing my heart!

                Are they able to remove the lymph node surgically??

                LynnLuc
                Participant

                  Curious as to what chemo they are starting you on…They put me on temodar and did radiation first…but that was the extent of the chemo I allowed them to do. I didn't want them killing my immune system when everything I read said I needed to boost it.

                  I later had surgery and I am in a vaccine trial. Did twelve weeks and now getting MDX 1106 ( Anti-PD-1) every 3 months for at least 2 years. NED 15 months so far. I had melanoma in my right paratracheal lymph node – 6.8 centimeters large. It  the early 1990's it begun as a freckle on my neck, came back as a dark purple eraser in the same place. It was removed  in 2000 and came back in 2009 kissing my heart!

                  Are they able to remove the lymph node surgically??

                  Lisa13
                  Participant

                    I was diagnosed with nodular melanoma in January 2011 and progressed to Stage 4 this month.  I was midiagnosed by my dermatologist last October who said it was a sebaceous cyst!  Needless to say for almost 4 months, that thing continued to grow vertical into blood stream.  

                    Nodular melanoma is the most agressive because it grows quickly and vertically. Mine was a small bump for a few months and I didn't think anything of it since I thought I knew the markings of melanoma. Turns out I didn't know it could be a bump.

                    I'm starting chemo as I have to do a first line of treatment for it before I do something else. I'm very upset because this is not agressive enough to me.

                    Lisa

                  Rebecca and Bob
                  Participant

                    My husband's melanoma was nodular colorless, which was missed by the GP and derm. Neither thought is was melanoma, that is why it's so dangerous because by the time it's found it's often very late.

                    I don't know about most treatable. My husband was Stage III in Jan 2007 then advanced to Stage IV in 2008. I felt it was quick moving. He did IL-2 and surgery and he's been NED for two years.

                    I do feel you need an agressive team of melanoma specialist not people standing around waiting for stuff to happen to you, that would just agravate me. I had my husband signed up to go talk to 3 different melanoma specialist to decide what we should do.

                    Good luck, I feel your frustration. I don't know you your seeing but husband went to NIH, UVA and Johns Hopkins and we stayed with NIH once he was in.

                     

                    Rebecca

                     

                    nicoli
                    Participant

                      I think you've answered your own question. The research you found is what I found when I was first diagnosed with nodular mm.

                      Your doctor is wrong, no doubt.  The days when cancer patients were told lies about their condition just to make them feel better are over. Whether he lied or is just ignorant, you need a better doctor.

                      Just another example of how we HAVE to be our own best advocate.

                      Nicki, Stage 3b

                      nicoli
                      Participant

                        I think you've answered your own question. The research you found is what I found when I was first diagnosed with nodular mm.

                        Your doctor is wrong, no doubt.  The days when cancer patients were told lies about their condition just to make them feel better are over. Whether he lied or is just ignorant, you need a better doctor.

                        Just another example of how we HAVE to be our own best advocate.

                        Nicki, Stage 3b

                        JerryfromFauq
                        Participant

                          You used the term "My doctor", I hope you are seing a Melanoma Specialist..  For melanoma even a general oncologist is not enough.  This field is moving so fast that even a Melanoma Specialist cannot keep up with everything and still see patients!

                          JerryfromFauq
                          Participant

                            You used the term "My doctor", I hope you are seing a Melanoma Specialist..  For melanoma even a general oncologist is not enough.  This field is moving so fast that even a Melanoma Specialist cannot keep up with everything and still see patients!

                        Viewing 5 reply threads
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