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Sister to a newly diagnosed patient with melanoma

Forums General Melanoma Community Sister to a newly diagnosed patient with melanoma

  • Post
    dlraysin
    Participant

      My brother was diagnosed in 2/11 with a spindle cell melanoma.  He had a lump on his chest that his family doctor said was a cycst for the last 5 years.

      My brother was diagnosed in 2/11 with a spindle cell melanoma.  He had a lump on his chest that his family doctor said was a cycst for the last 5 years. He finally complained enough that the doctor removed the "cyct" in the office.  The biopsy came back positive for melanoma that was 17mm thick and was attached into the fatty tissue.  Of all things, I am a chemo nurse for an oncologist.  This happens to be one of the cancers that I have no experience with.  I went with my brother to see a surgical oncologist.  He said the the site would need be excised much larger with addittional biopsies and also to have sentinile node mapping done and biopsy the node.  This was expected.  After all of the reading I also expected that the nodes would be positive due to very large size.  I got the impression that the doctor also expected this.  Due to poor insurance coverage, he did not get a pet scan, but did get a ct scan.  Nothing was seen.  The additional surgery found the lymph node negative, there was a small part of the tumor left behind that was removed along with a 5 in circumfrance around the site.  The doctors are al puzzled, biopsies have been triple checked, because the tumor was 17 mm, but are not finding mets or positive lymph nodes (yet). We were told outright that he was at an extremely high risk for recurrance and mets because it is spindle cell and 17mm.  We were previously told by the surgeon that interferon would be standard of care, but would only lower the risk about 1%.  After being released from the surgeon, he was sent to a general oncologist who recommended interferon for a year.  My brother (age 40 with a 12 year old son) doesn't want treatment because he feels that it won't make a difference (was told only reduces risk 1%) and if it is going to return he doesnt want to spend a year being sick when he can spend it living.  As family, we are scared and frustrated.  I understand his feelings and will support his choices, but am also looking for addittional information that may provide better info.  I am trying to get him to get other opinions.  Does anyone have any experience in this (type and stage, size of tumor, kind of treatment, or refusal of treatment).  I would appreciate any and all comments.  I feel that I am a great nurse to my patients, but stink at it when it is family.

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    • Replies
        Carol Taylor
        Participant

          Hi Sister,

          No where do I read that your brother has seen a melanoma specialist and that's the first thing you both need for him to do! All this "general" stuff just won't cut it!  My advice: find one and make that appt today! Yesterday if possible!

          Lord, in Your mercy, You are greater than all our insurance companies and You are the best insurer we can have. Please open, even now, the doors the brother needs to get the treatment that will help…or at least good solid info so he can make a wise decision. And thank you for sis who is his advocate. Help her put aside any pride or "I should know betters" to be of benefit to him. Bring peace, comfort and assurance of hope. Amen.

          Carol Taylor
          Participant

            Hi Sister,

            No where do I read that your brother has seen a melanoma specialist and that's the first thing you both need for him to do! All this "general" stuff just won't cut it!  My advice: find one and make that appt today! Yesterday if possible!

            Lord, in Your mercy, You are greater than all our insurance companies and You are the best insurer we can have. Please open, even now, the doors the brother needs to get the treatment that will help…or at least good solid info so he can make a wise decision. And thank you for sis who is his advocate. Help her put aside any pride or "I should know betters" to be of benefit to him. Bring peace, comfort and assurance of hope. Amen.

            washoegal
            Participant

              The comment above was right on.  First thing you need to do is get your brother to a Melanoma Specialist, if he hasn't seen one.  You'll find there is a world of difference.  Right now he may not need one, but the specialist will suggest follow-up testing and it will save precious time if the worse ever happens and there is a mastitis.

              As an example:  the comment regarding why the spindle cell had not spread to the lymph nodes, I found this article.  Journal of American Academy Dermatology March 2001.

              Abstract 

              Background: The propensity for spindle cell melanoma to metastasize to the lymph node is relatively low despite its relative thick depth. To date, there are no published reports on the sentinel lymph node (SLN) status in patients diagnosed with spindle cell melanoma and desmoplastic malignant melanoma (DMM). Objective: Our purpose was to report our experience on the SLN status in spindle cell melanoma and DMM. Methods: We undertook a retrospective database and medical record review from Oct 21, 1993 to Sept 29, 1999. At the University of California at San Francisco Melanoma Center, patients with tumor thickness greater than 1 mm or less than 1 mm with high-risk features are managed with preoperative lymphoscintigraphy, selective SLN dissection, and wide excision. Results: Of 29 patients diagnosed with spindle cell melanoma and DMM, 28 had negative SLNs and are free of disease except for one patient who experienced splenic, bony, and brain metastases. The mean follow-up in this population was 16.5 and 11 months, respectively. Conclusion: Our preliminary findings show that SLNs from patients diagnosed with spindle cell melanoma and DMM only rarely harbor micrometastasis despite their relative thickness. A larger number of cases from multicenter databases may further define the true biology of SLNs in this melanoma variant. (J Am Acad Dermatol 2001;44:451-5.).

               

              I would expect a Mel Onc to have further more updated info.  I am Stage 3a and like your brother decided against Interferon for the same reasons.  The benefits just didn't seem to be there.  It's a very individual decision, like you my bother and sister were wild that I do something, anything!  My bother looked up all the research, even called a specialist himself.  But for me, at least, interferon, was not the answer.  I am14 months post surgery…next scans in a couple of weeks but so far I'm good.  You'll find that there are not many, if any, option for trials at his stage.  It's a matter of careful follow-up.  Ippi (Veroy) has just been released but I don't think it's approved for stage 2 and it's very expensive so the insurance companies are not covering it, but it's something to ask about.  There is financial help.

              Good Luck

              Mary

              Stage 3

              washoegal
              Participant

                The comment above was right on.  First thing you need to do is get your brother to a Melanoma Specialist, if he hasn't seen one.  You'll find there is a world of difference.  Right now he may not need one, but the specialist will suggest follow-up testing and it will save precious time if the worse ever happens and there is a mastitis.

                As an example:  the comment regarding why the spindle cell had not spread to the lymph nodes, I found this article.  Journal of American Academy Dermatology March 2001.

                Abstract 

                Background: The propensity for spindle cell melanoma to metastasize to the lymph node is relatively low despite its relative thick depth. To date, there are no published reports on the sentinel lymph node (SLN) status in patients diagnosed with spindle cell melanoma and desmoplastic malignant melanoma (DMM). Objective: Our purpose was to report our experience on the SLN status in spindle cell melanoma and DMM. Methods: We undertook a retrospective database and medical record review from Oct 21, 1993 to Sept 29, 1999. At the University of California at San Francisco Melanoma Center, patients with tumor thickness greater than 1 mm or less than 1 mm with high-risk features are managed with preoperative lymphoscintigraphy, selective SLN dissection, and wide excision. Results: Of 29 patients diagnosed with spindle cell melanoma and DMM, 28 had negative SLNs and are free of disease except for one patient who experienced splenic, bony, and brain metastases. The mean follow-up in this population was 16.5 and 11 months, respectively. Conclusion: Our preliminary findings show that SLNs from patients diagnosed with spindle cell melanoma and DMM only rarely harbor micrometastasis despite their relative thickness. A larger number of cases from multicenter databases may further define the true biology of SLNs in this melanoma variant. (J Am Acad Dermatol 2001;44:451-5.).

                 

                I would expect a Mel Onc to have further more updated info.  I am Stage 3a and like your brother decided against Interferon for the same reasons.  The benefits just didn't seem to be there.  It's a very individual decision, like you my bother and sister were wild that I do something, anything!  My bother looked up all the research, even called a specialist himself.  But for me, at least, interferon, was not the answer.  I am14 months post surgery…next scans in a couple of weeks but so far I'm good.  You'll find that there are not many, if any, option for trials at his stage.  It's a matter of careful follow-up.  Ippi (Veroy) has just been released but I don't think it's approved for stage 2 and it's very expensive so the insurance companies are not covering it, but it's something to ask about.  There is financial help.

                Good Luck

                Mary

                Stage 3

                FormerCaregiver
                Participant

                  Welcome to our group. There are many wonderful people in this forum, and they will be able to
                  answer your questions and hopefully ease your concerns.

                  I am not a fan of interferon, although a few people feel that it has been beneficial to them.
                  Melanoma research is advancing rapidly, and the new treatments that are available through clinical
                  trials look promising.

                  Here is some info on spindle cell melanoma:
                  http://www.skincancer.org/ask-the-expert-what-is-spindle-cell-melanoma.html

                  If your brother can have a PET scan soon, that would certainly be helpful.

                  With any type of melanoma the depth of the primary lesion is very important. As you mentioned in
                  your profile he is "extremely high risk for mets". Therefore, it would be good to have a look at
                  what clinical trials are available at:
                  http://www.clinicaltrials.gov/ct2/results/refine?term=melanoma

                  Hope this helps.

                  Frank from Australia

                  FormerCaregiver
                  Participant

                    Welcome to our group. There are many wonderful people in this forum, and they will be able to
                    answer your questions and hopefully ease your concerns.

                    I am not a fan of interferon, although a few people feel that it has been beneficial to them.
                    Melanoma research is advancing rapidly, and the new treatments that are available through clinical
                    trials look promising.

                    Here is some info on spindle cell melanoma:
                    http://www.skincancer.org/ask-the-expert-what-is-spindle-cell-melanoma.html

                    If your brother can have a PET scan soon, that would certainly be helpful.

                    With any type of melanoma the depth of the primary lesion is very important. As you mentioned in
                    your profile he is "extremely high risk for mets". Therefore, it would be good to have a look at
                    what clinical trials are available at:
                    http://www.clinicaltrials.gov/ct2/results/refine?term=melanoma

                    Hope this helps.

                    Frank from Australia

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