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2nd opionion on radiation – scalp melanoma

Forums General Melanoma Community 2nd opionion on radiation – scalp melanoma

  • Post
    TracyLee
    Participant

    I've got two appointments in the next couple of weeks for a second opinion about having radiation for my scalp melanoma.

    First appointment is at U of Penn in Philly with Dr. Schuchter. Second is at Johns Hopkins with Dr. Sharfman. Has anyone else consulted with either of them?

    Anything SPECIFIC I should be asking at these consultations? I'm mailing my entire set of records ahead of the appointments for their review.

    I've got two appointments in the next couple of weeks for a second opinion about having radiation for my scalp melanoma.

    First appointment is at U of Penn in Philly with Dr. Schuchter. Second is at Johns Hopkins with Dr. Sharfman. Has anyone else consulted with either of them?

    Anything SPECIFIC I should be asking at these consultations? I'm mailing my entire set of records ahead of the appointments for their review.

    While I feel I should do radiation, my husband is opposed. Obviously it's ultimately my choice, but it would be helpful to be on the same page as far as treatment. This is all hard enough without also battling my husband!

    My doctors feel it has migrated into my skull membrane (on top of the skull, not inside), and there is only so much they can do surgically. I have had five surgeries in the past year, on my scalp and neck.

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      nicoli
      Participant

      Hi Tracy. Like you I have scalp melanoma. I am now doing radiation, 5 days a week for 6 weeks. I am 8 days in. I have no side effects and the only side effects expected are hair loss, 2nd degree sunburn on scalp and some fatigue. Oh, and the mask, I HATE the mask.

      Have had 2 major scalp surgeries and the surgeon says I don't have enough healthy tissue left to do more slice and dice. Fortunately, the tumors are gone, just lots of cells left.

      Radiation can kill melanoma cells, is not so good on melanoma tumors except to possibly shrink them a little and provide pallative (sp?) care.

      My onc sent my case to the local tumor board as well as to Dr. Lewis at the University of Colorado Cancer center and they all believed radiation was appropiate and necessary after my last surgery.

      There just aren't that many options. Head and neck is the worst place to have melanoma due to the close proximity to the brain and lungs.

      Does your husband have a better idea? Maybe a trial or something?

      Nicki, Stage 3b. scalp

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        TracyLee
        Participant

        Nicki,

        Thanks for the helpful info!

        I too see radiation as about the only option. My husband is scared spitless and just can't deal. He also hasn't had to have five surgeries in one year! He keeps saying that it's all gone with the surgery. Not really, since I keep having recurrences!

        How was the mask? I've not yet met with my radiation oncologist for "the plan", but had already heard about the mask. Not sure how that will work with my neck being involved also.

        I feel like there will always be an anvil hanging over my head (literally), and if radiation helps strengthen the rope holding the anvil, then let's do it.

        I cracked up my oncologists office last visit. Told them "well, you know, it's all IN my head". Got to find the humor where I can!

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        TracyLee
        Participant

        Nicki,

        Thanks for the helpful info!

        I too see radiation as about the only option. My husband is scared spitless and just can't deal. He also hasn't had to have five surgeries in one year! He keeps saying that it's all gone with the surgery. Not really, since I keep having recurrences!

        How was the mask? I've not yet met with my radiation oncologist for "the plan", but had already heard about the mask. Not sure how that will work with my neck being involved also.

        I feel like there will always be an anvil hanging over my head (literally), and if radiation helps strengthen the rope holding the anvil, then let's do it.

        I cracked up my oncologists office last visit. Told them "well, you know, it's all IN my head". Got to find the humor where I can!

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      nicoli
      Participant

      Hi Tracy. Like you I have scalp melanoma. I am now doing radiation, 5 days a week for 6 weeks. I am 8 days in. I have no side effects and the only side effects expected are hair loss, 2nd degree sunburn on scalp and some fatigue. Oh, and the mask, I HATE the mask.

      Have had 2 major scalp surgeries and the surgeon says I don't have enough healthy tissue left to do more slice and dice. Fortunately, the tumors are gone, just lots of cells left.

      Radiation can kill melanoma cells, is not so good on melanoma tumors except to possibly shrink them a little and provide pallative (sp?) care.

      My onc sent my case to the local tumor board as well as to Dr. Lewis at the University of Colorado Cancer center and they all believed radiation was appropiate and necessary after my last surgery.

      There just aren't that many options. Head and neck is the worst place to have melanoma due to the close proximity to the brain and lungs.

      Does your husband have a better idea? Maybe a trial or something?

      Nicki, Stage 3b. scalp

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      nicoli
      Participant

      Your  husband needs education. Just like my husband did.

      In most cancer the routine is this:  Surgery to remove tumors, chemo to kill cells that got into the lymph or blood system, radiation to kill anything else in the area of the primary tumor.

      Unfortunately with melanoma, we don't have a good, effective chemo to kill those cells. But we do have radiation and sometimes it works. Google a study on radiation after melanoma surgery and its effect on recurrances. Dated November or December 2009, I think.

      I think my husband didn't like the idea of permanent baldness. He is sorta shallow that way. I say "rather to be alive and bald than dead with hair."  I am doing everything I can to fight this beast.

      The mask:  not too uncomfortable but kinda freaky cuz it smashes your eyes, and mouth. You cannot talk or see but you can breath through your nose. If I have to I can make hand movements to signal the radiation techs.  If you are claustraphobic, they can make adjustments to the mask. My whole radiation time in the mask is about 15 minutes each day. And they can make the mask to go over your shoulders too since you may have neck radiation. It's purpose is to hold you perfectly still for the treatments.

      And be sure to tell your husband that with the modern technology of radiation, you will get little or none to your brain or skull. Their "aim" is real good.

      My opinion for what it's worth:  Do what you feel you have to do and your husband will come around. 

      Nicki, Hebrews 13:5 right back at ya!!

       

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      nicoli
      Participant

      Your  husband needs education. Just like my husband did.

      In most cancer the routine is this:  Surgery to remove tumors, chemo to kill cells that got into the lymph or blood system, radiation to kill anything else in the area of the primary tumor.

      Unfortunately with melanoma, we don't have a good, effective chemo to kill those cells. But we do have radiation and sometimes it works. Google a study on radiation after melanoma surgery and its effect on recurrances. Dated November or December 2009, I think.

      I think my husband didn't like the idea of permanent baldness. He is sorta shallow that way. I say "rather to be alive and bald than dead with hair."  I am doing everything I can to fight this beast.

      The mask:  not too uncomfortable but kinda freaky cuz it smashes your eyes, and mouth. You cannot talk or see but you can breath through your nose. If I have to I can make hand movements to signal the radiation techs.  If you are claustraphobic, they can make adjustments to the mask. My whole radiation time in the mask is about 15 minutes each day. And they can make the mask to go over your shoulders too since you may have neck radiation. It's purpose is to hold you perfectly still for the treatments.

      And be sure to tell your husband that with the modern technology of radiation, you will get little or none to your brain or skull. Their "aim" is real good.

      My opinion for what it's worth:  Do what you feel you have to do and your husband will come around. 

      Nicki, Hebrews 13:5 right back at ya!!

       

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      Linny
      Participant

      I started off with Johns Hopkins: was examined by a dermatologist at their melanoma clinic, then met their surgeon, and had my lymphadenectomy done there. All this took place this past December-January.

      In February I saw Dr. Scharfmann at Hopkins and Dr. Fecher at U of Penn (for my second opinion). I liked both doctors very much.

      Fecher works with Schuchter and if Schuchter's anywhere near as thorough as Fecher, then you're in excellent hands.

      Scharfmann also was thorough and personality-wise, he was very laid back, which had a calming effect on me. Had I seen him first, rather than his dermatologist (aka "the Grim Reaper") I would have had a much more pleasant Christmas and New Year's.

      My visit with both doctors was very pleasant and I had nothing to lose by staying with either one. Sometimes you walk into a doctor's office and you feel like you're talking to a total idiot or a complete jerk. This was not the case at all here.

      I wound up choosing Dr. Scharfmann over Dr. Fecher because Hopkins is closer to where I live and I already knew my way around there, plus Scharfmann also told me I might qualify for the MAGE Vaccine Clinical trial, which I was very intersted in doing. I signed the papers, got the exams done and am in the trial! I've just gotten my second shot and all is going well so far (knock on wood). As a matter of fact, I'm heading back to Hopkins tomorrow for my 3 month follow-up visit with the surgeon.

      If you decide on Hopkins, and have any more questions, just ask!

      Linda

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      Linny
      Participant

      I started off with Johns Hopkins: was examined by a dermatologist at their melanoma clinic, then met their surgeon, and had my lymphadenectomy done there. All this took place this past December-January.

      In February I saw Dr. Scharfmann at Hopkins and Dr. Fecher at U of Penn (for my second opinion). I liked both doctors very much.

      Fecher works with Schuchter and if Schuchter's anywhere near as thorough as Fecher, then you're in excellent hands.

      Scharfmann also was thorough and personality-wise, he was very laid back, which had a calming effect on me. Had I seen him first, rather than his dermatologist (aka "the Grim Reaper") I would have had a much more pleasant Christmas and New Year's.

      My visit with both doctors was very pleasant and I had nothing to lose by staying with either one. Sometimes you walk into a doctor's office and you feel like you're talking to a total idiot or a complete jerk. This was not the case at all here.

      I wound up choosing Dr. Scharfmann over Dr. Fecher because Hopkins is closer to where I live and I already knew my way around there, plus Scharfmann also told me I might qualify for the MAGE Vaccine Clinical trial, which I was very intersted in doing. I signed the papers, got the exams done and am in the trial! I've just gotten my second shot and all is going well so far (knock on wood). As a matter of fact, I'm heading back to Hopkins tomorrow for my 3 month follow-up visit with the surgeon.

      If you decide on Hopkins, and have any more questions, just ask!

      Linda

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      K in LA
      Participant

      If you haven't done so already, you may also want to look at a more "systemic" treatment like the PLX drug if you're BRAF positive and/or Ipi — there are tons of postings on the board for both of these plus other treatments

      I don't know if these Drs are radiology oncologists or melanoma specialists; if they are the former rather than the latter then you need to see someone specializing in melanoma.  

       

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      K in LA
      Participant

      If you haven't done so already, you may also want to look at a more "systemic" treatment like the PLX drug if you're BRAF positive and/or Ipi — there are tons of postings on the board for both of these plus other treatments

      I don't know if these Drs are radiology oncologists or melanoma specialists; if they are the former rather than the latter then you need to see someone specializing in melanoma.  

       

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      lhaley
      Participant

      Linny,

      I'm sorry that your husband isn't "getting" it.  I know that sometimes my husband just seems to be in deep denial…..

      I went to Dr. Sharfmann for several years.  At that time I was stage 1A and had not had my recurrance. He did a good job of organizing my health care when I had issues. One time the end result was a kidney stone that was lodged. My primary Dr. (HMO) was being remiss in doing anything!  Dr. Sharfman wrote him quite a letter outining the tests that needed to be done to find out where my pain was coming from.  He had done a bone scan plus other scans but insurance was demanding that my primary care Dr. should be doing the referrals.  ugh   I have heard that he isn't as aggressive as some of the other mel specialists. My thinking is that Hopkins just doesn't offer as many trials as some other institutions.

      Have heard excellent things about Lynn Schuchter.  Many mpip members in the past have traveled to see her. The one that comes to mind that is a patient of hers is Rich. His wife Anne posts occasionally. Rich had mets everywhere approx 9 years ago. Last I heard he is still NED! 

      If you are looking into radiation I would go to whomever is closest, traveling will be tiring.  Is your current oncologist a melanoma specialist? Are you looking into changing over your care entirely or just wanting a second opinion.

      Let us know how it goes,

      Linda

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        lhaley
        Participant

        Sorry, that was meant to be directed to Tracy not Linny.

        Linda

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        lhaley
        Participant

        Sorry, that was meant to be directed to Tracy not Linny.

        Linda

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      lhaley
      Participant

      Linny,

      I'm sorry that your husband isn't "getting" it.  I know that sometimes my husband just seems to be in deep denial…..

      I went to Dr. Sharfmann for several years.  At that time I was stage 1A and had not had my recurrance. He did a good job of organizing my health care when I had issues. One time the end result was a kidney stone that was lodged. My primary Dr. (HMO) was being remiss in doing anything!  Dr. Sharfman wrote him quite a letter outining the tests that needed to be done to find out where my pain was coming from.  He had done a bone scan plus other scans but insurance was demanding that my primary care Dr. should be doing the referrals.  ugh   I have heard that he isn't as aggressive as some of the other mel specialists. My thinking is that Hopkins just doesn't offer as many trials as some other institutions.

      Have heard excellent things about Lynn Schuchter.  Many mpip members in the past have traveled to see her. The one that comes to mind that is a patient of hers is Rich. His wife Anne posts occasionally. Rich had mets everywhere approx 9 years ago. Last I heard he is still NED! 

      If you are looking into radiation I would go to whomever is closest, traveling will be tiring.  Is your current oncologist a melanoma specialist? Are you looking into changing over your care entirely or just wanting a second opinion.

      Let us know how it goes,

      Linda

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      James from Sydney
      Participant

      just a thought, i have just been to a Forum where the Surgeon  discussed PV10 or Rose Bengal as it is otherwise known, it is injected direct into tumors that are close to the surface. It has also shown that it has a bystander effect which means that nearby areas may receive benefit. The Company is Provectus, maybe contact them and see what they think. It may be a useful treatment post Radiation.

      best wishes

      James

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      James from Sydney
      Participant

      just a thought, i have just been to a Forum where the Surgeon  discussed PV10 or Rose Bengal as it is otherwise known, it is injected direct into tumors that are close to the surface. It has also shown that it has a bystander effect which means that nearby areas may receive benefit. The Company is Provectus, maybe contact them and see what they think. It may be a useful treatment post Radiation.

      best wishes

      James

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      FormerCaregiver
      Participant

      Just thought that I would say a bit about the overall situation. I have just read your profile,
      but couldn't see anything about any scans that you may have had. Therefore, I am wondering if you
      had a CT scan or PET scan yet?

      I feel that your husband really needs to be educated about the potential seriousness of melanoma.
      Perhaps if you can mention to him that it is "not just ordinary skin cancer" because of the way
      it tends to spread inside the body. The damage that it does is often unseen, and that is why the
      scans that I have mentioned might be a good idea.

      Radiation therapy is one of the range of options that a doctor might consider. As the depth of
      your primary lesion was over 4.00 mm, this can lead to the possibility of distant metastasis that
      would need systemic treatment.

      Hope this helps.

      Frank from Australia

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      FormerCaregiver
      Participant

      Just thought that I would say a bit about the overall situation. I have just read your profile,
      but couldn't see anything about any scans that you may have had. Therefore, I am wondering if you
      had a CT scan or PET scan yet?

      I feel that your husband really needs to be educated about the potential seriousness of melanoma.
      Perhaps if you can mention to him that it is "not just ordinary skin cancer" because of the way
      it tends to spread inside the body. The damage that it does is often unseen, and that is why the
      scans that I have mentioned might be a good idea.

      Radiation therapy is one of the range of options that a doctor might consider. As the depth of
      your primary lesion was over 4.00 mm, this can lead to the possibility of distant metastasis that
      would need systemic treatment.

      Hope this helps.

      Frank from Australia

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