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Another special request for Janner

Forums Cutaneous Melanoma Community Another special request for Janner

  • Post
    stars
    Participant

      Hi Janner

      I've been looking at the boards for a while, ever since I was first diagnosed with stage 0 melanoma in Jan this year after a whole-body skin check.

      Unfortunately, I've since been diagnosed with two more – both stage 1, still waiting on one WLE (other WLE done and pathology all clear).

      So that puts me in the three melanoma club… all within 6 months… I feel like I've been struck by lightning then hit by a bus..

      I'm 43 and want to bleat about being too young for all of this, but looking at the boards there are plenty younger than me here! I also live in Australia, in the melanoma capital of the world.

      My question for you (or perhaps questions, if you have time):

      what is your frequency of full skin check, and with which specialist? To date I have only been to a skin cancer clinic – this is a clinic run by GPs, not derms or any other specialists. Basically, these GPs decide to 'specialise' in skin cancer and do lots of dermoscopy courses. I have been seeing them for six months but have now made an appt with a derm as I think I might have outgrown GP care at this stage GP = general practitioner.

      what is your advice re self monitoring – I have basically found all of my melanomas, all looked different to each other and all were at first regarded as nothing at all by both my family GP and (with the exception of one melanoma) even the skin cancer clinic – it's only because I insisted that my last two melanomas were biopsied, one even with a shave (!) which makes me angry as even I as a first time melanoma pt know how inadvisable a shave biopsy is for lesions that are ALL about depth. I can monitor the visible ones… but what about my back etc?

      what is your advice for obtaining peace of mind or as close to it as possible? I feel like every (frequent) skin check I go to results in biopsy, stress, WLE….

      I don't have any family history of melanoma… what are your thoughts on gene testing in my situation?

      Hope to hear from you, and anyone else who would care to respond

      Stars

    Viewing 2 reply threads
    • Replies
        Janner
        Participant

          what is your frequency of full skin check, and with which specialist?

          "Every 6 months for life".  My doc is a cutaneous oncologist and Mohs surgeon at the local cancer center.  My first two diagnoses, I was with a basic dermatologist but I moved to the cancer center after the second thinking I wanted a specialist.

          what is your advice re self monitoring

          I've found my 3 primaries, all were different from each other but the first one was the most "classical".  The 2nd and 3rd probably would have passed a general look by most but I knew they had changed and insisted on biopsies.  Shave biopsies are not considered bad by all the melanoma community.  Deep shaves may work better on wider lesions because a punch might not be wide enough.  Truthfully, all my biopsies now are excisional.  I don't have biopsies often so when we do it, we just do an excisional.  In addition, I do not expect ANY doctor to find my primaries.  I expect to find everything myself.  I know my body best.

          what is your advice for obtaining peace of mind or as close to it as possible?

          Photography.  100% photography.  I only biopsy things that change.  Do you have dysplastic nevus syndrome?  I don't.  I don't have hundreds of moles, just 20-30 that are all atypical to some degree.  But if they aren't changing, I'm not removing them.  I have a ton of freckles on my back, but few moles.  However the freckles make it hard to see anything.  I do a general look myself and have my husband look as well.  But I also like my derm to go a good check on the back.  One of my primaries was on my shoulder blade.  But it stood out even to me just looking at it via a mirror.

          what are your thoughts on gene testing in my situation?

          I don't see that much point unless you really want to know.  I'm not monitored any differently for having a genetic defect.  I am adopted so have no clue what my family history really is.  The only reason I was tested was I participated in a clinical study.  Multiple primaries indicates a higher risk of being genetic.  But if you have dysplastic nevus syndrome, that is also genetic and a different beast from the defect that I have.  DNS people also are at high risk for multiples.

            stars
            Participant

              Thanks, Janner. I really appreciate your quick feedback and experience on this matter.

              I'll also be a lifelong checker… 6 monthly or perhaps even three monthly. My issue at present is confidence – I have been to my family GP and also a specialist skin cancer clinic and for various reasons don't have full confidence in either. The GP skin cancer clinic I am going to now suggested 6 monthly but as I mentioned I'm going to change up to a derm and will go with what he recommends, which I'm thinking will be six monthly. I hope changing up to a derm also gives the confidence that I currently lack re quality of monitoring/detection. I don't live near any large cancer centre and our public hospital doesn't even have a derm at present let alone a more specialist person. I'll be seeing a private derm but also asking around if there's anyone better qualified.

              Self monitoring – my skin sounds the same as yours, I don't have that many moles, and even fewer at the rate they are being removed. It's excisions for me from now on, too. I looked at my sister's back recently and unfortunately she has very similar looking lesions to mine 'pre-melanoma changes'. I've pointed out to her the type of lesion that changed in my case and the nature of the changes (usually darkening, spreading or generally looking murky).

              Photography – hopefully the derm does sequential imaging of moles, if not I might try find someone who can. GP skin cancer clinic suggested photography using eg a digital camera that doc and I can then look back at but I'm not sure. What photography do you do?

              Gene testing – I'm only thinking of my own kids and immediate family, so that they know. Like you say, our situation and monitoring doesn't change at all. As for being high risk for melanoma, that horse has already bolted, too. But perhaps I'll do it for some certainty for them.

              All the best and thanks again

              Stars

              stars
              Participant

                Thanks, Janner. I really appreciate your quick feedback and experience on this matter.

                I'll also be a lifelong checker… 6 monthly or perhaps even three monthly. My issue at present is confidence – I have been to my family GP and also a specialist skin cancer clinic and for various reasons don't have full confidence in either. The GP skin cancer clinic I am going to now suggested 6 monthly but as I mentioned I'm going to change up to a derm and will go with what he recommends, which I'm thinking will be six monthly. I hope changing up to a derm also gives the confidence that I currently lack re quality of monitoring/detection. I don't live near any large cancer centre and our public hospital doesn't even have a derm at present let alone a more specialist person. I'll be seeing a private derm but also asking around if there's anyone better qualified.

                Self monitoring – my skin sounds the same as yours, I don't have that many moles, and even fewer at the rate they are being removed. It's excisions for me from now on, too. I looked at my sister's back recently and unfortunately she has very similar looking lesions to mine 'pre-melanoma changes'. I've pointed out to her the type of lesion that changed in my case and the nature of the changes (usually darkening, spreading or generally looking murky).

                Photography – hopefully the derm does sequential imaging of moles, if not I might try find someone who can. GP skin cancer clinic suggested photography using eg a digital camera that doc and I can then look back at but I'm not sure. What photography do you do?

                Gene testing – I'm only thinking of my own kids and immediate family, so that they know. Like you say, our situation and monitoring doesn't change at all. As for being high risk for melanoma, that horse has already bolted, too. But perhaps I'll do it for some certainty for them.

                All the best and thanks again

                Stars

                stars
                Participant

                  Thanks, Janner. I really appreciate your quick feedback and experience on this matter.

                  I'll also be a lifelong checker… 6 monthly or perhaps even three monthly. My issue at present is confidence – I have been to my family GP and also a specialist skin cancer clinic and for various reasons don't have full confidence in either. The GP skin cancer clinic I am going to now suggested 6 monthly but as I mentioned I'm going to change up to a derm and will go with what he recommends, which I'm thinking will be six monthly. I hope changing up to a derm also gives the confidence that I currently lack re quality of monitoring/detection. I don't live near any large cancer centre and our public hospital doesn't even have a derm at present let alone a more specialist person. I'll be seeing a private derm but also asking around if there's anyone better qualified.

                  Self monitoring – my skin sounds the same as yours, I don't have that many moles, and even fewer at the rate they are being removed. It's excisions for me from now on, too. I looked at my sister's back recently and unfortunately she has very similar looking lesions to mine 'pre-melanoma changes'. I've pointed out to her the type of lesion that changed in my case and the nature of the changes (usually darkening, spreading or generally looking murky).

                  Photography – hopefully the derm does sequential imaging of moles, if not I might try find someone who can. GP skin cancer clinic suggested photography using eg a digital camera that doc and I can then look back at but I'm not sure. What photography do you do?

                  Gene testing – I'm only thinking of my own kids and immediate family, so that they know. Like you say, our situation and monitoring doesn't change at all. As for being high risk for melanoma, that horse has already bolted, too. But perhaps I'll do it for some certainty for them.

                  All the best and thanks again

                  Stars

                Janner
                Participant

                  what is your frequency of full skin check, and with which specialist?

                  "Every 6 months for life".  My doc is a cutaneous oncologist and Mohs surgeon at the local cancer center.  My first two diagnoses, I was with a basic dermatologist but I moved to the cancer center after the second thinking I wanted a specialist.

                  what is your advice re self monitoring

                  I've found my 3 primaries, all were different from each other but the first one was the most "classical".  The 2nd and 3rd probably would have passed a general look by most but I knew they had changed and insisted on biopsies.  Shave biopsies are not considered bad by all the melanoma community.  Deep shaves may work better on wider lesions because a punch might not be wide enough.  Truthfully, all my biopsies now are excisional.  I don't have biopsies often so when we do it, we just do an excisional.  In addition, I do not expect ANY doctor to find my primaries.  I expect to find everything myself.  I know my body best.

                  what is your advice for obtaining peace of mind or as close to it as possible?

                  Photography.  100% photography.  I only biopsy things that change.  Do you have dysplastic nevus syndrome?  I don't.  I don't have hundreds of moles, just 20-30 that are all atypical to some degree.  But if they aren't changing, I'm not removing them.  I have a ton of freckles on my back, but few moles.  However the freckles make it hard to see anything.  I do a general look myself and have my husband look as well.  But I also like my derm to go a good check on the back.  One of my primaries was on my shoulder blade.  But it stood out even to me just looking at it via a mirror.

                  what are your thoughts on gene testing in my situation?

                  I don't see that much point unless you really want to know.  I'm not monitored any differently for having a genetic defect.  I am adopted so have no clue what my family history really is.  The only reason I was tested was I participated in a clinical study.  Multiple primaries indicates a higher risk of being genetic.  But if you have dysplastic nevus syndrome, that is also genetic and a different beast from the defect that I have.  DNS people also are at high risk for multiples.

                  Janner
                  Participant

                    what is your frequency of full skin check, and with which specialist?

                    "Every 6 months for life".  My doc is a cutaneous oncologist and Mohs surgeon at the local cancer center.  My first two diagnoses, I was with a basic dermatologist but I moved to the cancer center after the second thinking I wanted a specialist.

                    what is your advice re self monitoring

                    I've found my 3 primaries, all were different from each other but the first one was the most "classical".  The 2nd and 3rd probably would have passed a general look by most but I knew they had changed and insisted on biopsies.  Shave biopsies are not considered bad by all the melanoma community.  Deep shaves may work better on wider lesions because a punch might not be wide enough.  Truthfully, all my biopsies now are excisional.  I don't have biopsies often so when we do it, we just do an excisional.  In addition, I do not expect ANY doctor to find my primaries.  I expect to find everything myself.  I know my body best.

                    what is your advice for obtaining peace of mind or as close to it as possible?

                    Photography.  100% photography.  I only biopsy things that change.  Do you have dysplastic nevus syndrome?  I don't.  I don't have hundreds of moles, just 20-30 that are all atypical to some degree.  But if they aren't changing, I'm not removing them.  I have a ton of freckles on my back, but few moles.  However the freckles make it hard to see anything.  I do a general look myself and have my husband look as well.  But I also like my derm to go a good check on the back.  One of my primaries was on my shoulder blade.  But it stood out even to me just looking at it via a mirror.

                    what are your thoughts on gene testing in my situation?

                    I don't see that much point unless you really want to know.  I'm not monitored any differently for having a genetic defect.  I am adopted so have no clue what my family history really is.  The only reason I was tested was I participated in a clinical study.  Multiple primaries indicates a higher risk of being genetic.  But if you have dysplastic nevus syndrome, that is also genetic and a different beast from the defect that I have.  DNS people also are at high risk for multiples.

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