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PET scan?

Forums General Melanoma Community PET scan?

  • Post
    mwatts
    Participant

    Hi! I recently had a .3 melenoma removed with margins coming back clear after second time. I was given no further treatment after and just told to go back every 3 months. I am still scared to death it has spread. I have a long history of abnormal moles and still very young. Did anyone else get a PET scan with stage 1 or 2 or even a mole my size? Is this something I should push for? Any opinions would be appreciated =)

    Hi! I recently had a .3 melenoma removed with margins coming back clear after second time. I was given no further treatment after and just told to go back every 3 months. I am still scared to death it has spread. I have a long history of abnormal moles and still very young. Did anyone else get a PET scan with stage 1 or 2 or even a mole my size? Is this something I should push for? Any opinions would be appreciated =)

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  • Replies
      dian in spokane
      Participant

      No, in fact I am surprised that they want to see you every 3 months. Hopefully they will decrease those visits for you after the first year and you can go to yearly skin checks.

      I do not believe I've ever heard of anyone having a PET scan at stage 1. Your primary was shallow, and your risk of recurrence is low.

      Of more concern is your statement that you have a long history of 'abnormal moles' Does this mean you've had many biopsies? And what, precisely, do you mean by 'abnormal'? Because of this history, and your current melanoma, you need to be sure you have a very good dermatologist, hopefully, one involved with a melanoma center. Although that would kind of depend on where you live.

      However, if you are close enough to a major melanoma center, it would be a great idea if you looked into having your routine care done there. Even if you've got to drive a couple of hours, it would be good to establish a relationship with a skin doctor who is knowledgable, and involved more with ~disease~ than ~botox~

      But, since we don't know much about you, maybe you are seeing the best dermatologist in the country :)

      I don't think you need to push for a PET. Your insurance company would not likely pay for it. Plus there's the danger of false positives with PET, which would just ADD to your stress.

      Stress is really your biggest issue right now. Coming to grips with a cancer diagnosis and it's implications  is stressful. So, find a way to deal with stress. Yoga, exercise, prayer, meditation, whatever. Then look at proactive ways to face your future.

      This will involve maybe looking at nutritional and/or alternative ways to improve your immune system, and guarding your skin from sun exposure while still getting enough vitamin D for your bones and such. And of course, having regular skin checks.

      No sunburns.

      Welcome to the board, and good luck.

      Dian in spokane

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        mwatts
        Participant

        I so appreciate your thoughts and suggestions. The hardest thing for me is I have two very small kids and this has just rocked our world. I am scared ALL the time, can't sleep, having nightmares. It's horrible. I'm confused because my doctor actually characterized my cancer as stage 2b….From everything I have read the depth (.3) should be stage 1, but then again I did have Clarks level 2. I know it did enter the dermis, which is why I have such a wide insicion. Does this make sense to you?

        In the past I have had moderate to severe dysplastic nevi, where they had to go back in and get more taken out…never melenoma though until now.

        I have been reading lots of info. on cancer and becoming a vegan….is this something you have looked into or do?

        It's really nice to meet others that have been in my situation. It can really feel so lonely as you are going through it.

        I think you are right and it's a good idea to see a cancer specialist. Do you know how I would go about doing that? Would I need a referral or do you just find one on your own..???

        Thank you so much again,

        Marissa

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        dian in spokane
        Participant

        Marissa,

         

        I don't necessarily think you need t see a cancer specialist..that would be an oncologist, and yes, you'd need a referral to an oncologist. But you DO need a dermatologist who is knowledgable about melanoma. There's a big difference between stage 1 and stage 2B. you should be able to get a clear answer from your doc about your actual stage.

        I'm getting ready to hop on a plane right now, hopefully Janner will see your post and pop in with some advice while I'm in the air.

         

        dian

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        dian in spokane
        Participant

        Marissa,

         

        I don't necessarily think you need t see a cancer specialist..that would be an oncologist, and yes, you'd need a referral to an oncologist. But you DO need a dermatologist who is knowledgable about melanoma. There's a big difference between stage 1 and stage 2B. you should be able to get a clear answer from your doc about your actual stage.

        I'm getting ready to hop on a plane right now, hopefully Janner will see your post and pop in with some advice while I'm in the air.

         

        dian

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        mwatts
        Participant

        I so appreciate your thoughts and suggestions. The hardest thing for me is I have two very small kids and this has just rocked our world. I am scared ALL the time, can't sleep, having nightmares. It's horrible. I'm confused because my doctor actually characterized my cancer as stage 2b….From everything I have read the depth (.3) should be stage 1, but then again I did have Clarks level 2. I know it did enter the dermis, which is why I have such a wide insicion. Does this make sense to you?

        In the past I have had moderate to severe dysplastic nevi, where they had to go back in and get more taken out…never melenoma though until now.

        I have been reading lots of info. on cancer and becoming a vegan….is this something you have looked into or do?

        It's really nice to meet others that have been in my situation. It can really feel so lonely as you are going through it.

        I think you are right and it's a good idea to see a cancer specialist. Do you know how I would go about doing that? Would I need a referral or do you just find one on your own..???

        Thank you so much again,

        Marissa

        Loading spinner
      dian in spokane
      Participant

      No, in fact I am surprised that they want to see you every 3 months. Hopefully they will decrease those visits for you after the first year and you can go to yearly skin checks.

      I do not believe I've ever heard of anyone having a PET scan at stage 1. Your primary was shallow, and your risk of recurrence is low.

      Of more concern is your statement that you have a long history of 'abnormal moles' Does this mean you've had many biopsies? And what, precisely, do you mean by 'abnormal'? Because of this history, and your current melanoma, you need to be sure you have a very good dermatologist, hopefully, one involved with a melanoma center. Although that would kind of depend on where you live.

      However, if you are close enough to a major melanoma center, it would be a great idea if you looked into having your routine care done there. Even if you've got to drive a couple of hours, it would be good to establish a relationship with a skin doctor who is knowledgable, and involved more with ~disease~ than ~botox~

      But, since we don't know much about you, maybe you are seeing the best dermatologist in the country :)

      I don't think you need to push for a PET. Your insurance company would not likely pay for it. Plus there's the danger of false positives with PET, which would just ADD to your stress.

      Stress is really your biggest issue right now. Coming to grips with a cancer diagnosis and it's implications  is stressful. So, find a way to deal with stress. Yoga, exercise, prayer, meditation, whatever. Then look at proactive ways to face your future.

      This will involve maybe looking at nutritional and/or alternative ways to improve your immune system, and guarding your skin from sun exposure while still getting enough vitamin D for your bones and such. And of course, having regular skin checks.

      No sunburns.

      Welcome to the board, and good luck.

      Dian in spokane

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