Multiple Primaries?
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Multiple Primaries?

› Forums › General Melanoma Community › Multiple Primaries?

  • Post
    • April 9, 2012 at 4:48 pm
    olivermb
    Participant

    Hi Everyone,

    I was recently diagnosed with my second in situ (my first was two years ago). Both were caught early. I've had a number of dysplastic nevi removed, and I have many moles (though the biggest ones are probably about 5mm, but those aren't too many).

    I'm just kind of flipping out over the diagnosis of a second one. Thankfully, both were caught very early — characterized as early or evolving. But now, with my moles and atypical ones, I'm feeling like a walking time bomb.

    Hi Everyone,

    I was recently diagnosed with my second in situ (my first was two years ago). Both were caught early. I've had a number of dysplastic nevi removed, and I have many moles (though the biggest ones are probably about 5mm, but those aren't too many).

    I'm just kind of flipping out over the diagnosis of a second one. Thankfully, both were caught very early — characterized as early or evolving. But now, with my moles and atypical ones, I'm feeling like a walking time bomb.

    I've read the stats that about 8-12% develop second primaries, but does anyone know the likelihood of developing 3 or more if you've already developed 2?

    I'm trying to come to grips by recognizing that I have a full-body photo done, that I'll be seeing my derm even more regularly now (3 months), and that I do monthly self checks. But somehow, this isn't reassuring enough for me right now. Scared, scared, scared.

    I feel bad about even expressing these fears given the things people on here have gone and are going through. You have my greatest admiration.

    Any thoughts are welcome.

    My best,

    Mary

    age 47

Viewing 8 reply threads
  • Replies
      • April 10, 2012 at 2:19 am
      Janner
      Participant

      Your risk is higher than 8% now, but I've never seen exact figures.  It's interesting, but I've seen that the risk goes up much higher after 3.  It's like having one or two – you're in a lower risk situation.  But get that third one and it puts you in another category altogether.  Having babbled on about that – you're not a walking time bomb.  You are a very informed and proactive melanoma warrior.  You obviously know what to look for.  You're armed with regular appointments and body photos.  You have the knowledge and the tools so that — even if you get another primary — you'll most likely catch it early like all the others.  Did you know that people with multiple primaries actually have better survival figures than those with just one?

      It does get easier with time, and eventually you'll get to a better place with less anxiety.  It does happen.  Just do the things you have control over, and let go the rest.

      Best wishes,

      Janner

      Stage IB since 1992, 3 MM primaries

      • April 10, 2012 at 2:19 am
      Janner
      Participant

      Your risk is higher than 8% now, but I've never seen exact figures.  It's interesting, but I've seen that the risk goes up much higher after 3.  It's like having one or two – you're in a lower risk situation.  But get that third one and it puts you in another category altogether.  Having babbled on about that – you're not a walking time bomb.  You are a very informed and proactive melanoma warrior.  You obviously know what to look for.  You're armed with regular appointments and body photos.  You have the knowledge and the tools so that — even if you get another primary — you'll most likely catch it early like all the others.  Did you know that people with multiple primaries actually have better survival figures than those with just one?

      It does get easier with time, and eventually you'll get to a better place with less anxiety.  It does happen.  Just do the things you have control over, and let go the rest.

      Best wishes,

      Janner

      Stage IB since 1992, 3 MM primaries

      • April 10, 2012 at 2:19 am
      Janner
      Participant

      Your risk is higher than 8% now, but I've never seen exact figures.  It's interesting, but I've seen that the risk goes up much higher after 3.  It's like having one or two – you're in a lower risk situation.  But get that third one and it puts you in another category altogether.  Having babbled on about that – you're not a walking time bomb.  You are a very informed and proactive melanoma warrior.  You obviously know what to look for.  You're armed with regular appointments and body photos.  You have the knowledge and the tools so that — even if you get another primary — you'll most likely catch it early like all the others.  Did you know that people with multiple primaries actually have better survival figures than those with just one?

      It does get easier with time, and eventually you'll get to a better place with less anxiety.  It does happen.  Just do the things you have control over, and let go the rest.

      Best wishes,

      Janner

      Stage IB since 1992, 3 MM primaries

        • April 10, 2012 at 12:20 pm
        olivermb
        Participant

        Hi Janner,

        You are the best. Thank you! I looked at many of your previous postings now, and I hope you know how much you help people here. That is just awesome.

        I went into a dark place for the last couple of days, but I'm ready to come out fresh now. It's so funny about how the framing of information means everything. The human mind is a crazy thing, and mine skews the distribution, I think. 🙂

        Thanks, Janner! And congratulations on being NED for so long. Fantastic!

        Mary

        • April 10, 2012 at 12:20 pm
        olivermb
        Participant

        Hi Janner,

        You are the best. Thank you! I looked at many of your previous postings now, and I hope you know how much you help people here. That is just awesome.

        I went into a dark place for the last couple of days, but I'm ready to come out fresh now. It's so funny about how the framing of information means everything. The human mind is a crazy thing, and mine skews the distribution, I think. 🙂

        Thanks, Janner! And congratulations on being NED for so long. Fantastic!

        Mary

        • April 10, 2012 at 12:20 pm
        olivermb
        Participant

        Hi Janner,

        You are the best. Thank you! I looked at many of your previous postings now, and I hope you know how much you help people here. That is just awesome.

        I went into a dark place for the last couple of days, but I'm ready to come out fresh now. It's so funny about how the framing of information means everything. The human mind is a crazy thing, and mine skews the distribution, I think. 🙂

        Thanks, Janner! And congratulations on being NED for so long. Fantastic!

        Mary

      • April 13, 2012 at 8:01 pm
      AngelaM
      Participant
      Hi Mary
      I had 3 primaries in 2 years. 1st was in situ, 2nd was 0.24mm Clark II and 3rd was 0.45mm Clark III in Oct 2011. I had similar questions and Janner too posted a reply to my questions. I also spent a lot of time researching, speaking to fellow melanoma sufferers and my doctors. I live in South Africa where melanoma is quite common. I didn’t know this until I started asking all these questions. My doctors looked at me as if I was crazy when I said that according to the internet most people only ever get 1 melanoma. They said most of their patients get multiple primaries, and these are arguably South Africa’s best skin cancer specialists. I expect to get more, but I also expect to catch them early, as should you. You are on the good side of melanoma. You just have to stay there – which you will since you are informed.

      Best of luck
      Angela

        • April 14, 2012 at 8:50 pm
        alicia
        Participant
        Hi, I’ve also had three primaries total (2 in one year) and a bunch of dysplastic lesions removed. All of my melanomas have been amelanotic which probably is why they weren’t diagnosed as early since they don’t have that typical ugly duckling appearance. My first melanoma was >2.3mm Clark’s IV at least and spread to lymph nodes(stageIII) my second melanoma was stage 1 Clark’s II 0.59mm and my third was at least clarks IV and at least 1mm at biopsy(dr did shave bx cause she didn’t think much of it other than she wasn’t sure what it was so she didn’t get the deep border of the lesion in the shave biopsy). After wide excision was done I still had 2.3mm residual melanoma on me. This is why all melanoma patients should have punch biopsies. So I’ve had a stage 3, stage 1and stage 2 primary melanoma and 2 mild-moderate atypical lesions and 2 severely dysplastic vs Mel in situ lesions. I’m currently awaiting results from a punch biopsy I just had on Thursday. I hope it’s good:-) seems like I’m seeing more people with mult primaries lately. So glad yours are being caught early and you are educated on this disease:-) best of luck

        Alicia

        • April 14, 2012 at 8:50 pm
        alicia
        Participant
        Hi, I’ve also had three primaries total (2 in one year) and a bunch of dysplastic lesions removed. All of my melanomas have been amelanotic which probably is why they weren’t diagnosed as early since they don’t have that typical ugly duckling appearance. My first melanoma was >2.3mm Clark’s IV at least and spread to lymph nodes(stageIII) my second melanoma was stage 1 Clark’s II 0.59mm and my third was at least clarks IV and at least 1mm at biopsy(dr did shave bx cause she didn’t think much of it other than she wasn’t sure what it was so she didn’t get the deep border of the lesion in the shave biopsy). After wide excision was done I still had 2.3mm residual melanoma on me. This is why all melanoma patients should have punch biopsies. So I’ve had a stage 3, stage 1and stage 2 primary melanoma and 2 mild-moderate atypical lesions and 2 severely dysplastic vs Mel in situ lesions. I’m currently awaiting results from a punch biopsy I just had on Thursday. I hope it’s good:-) seems like I’m seeing more people with mult primaries lately. So glad yours are being caught early and you are educated on this disease:-) best of luck

        Alicia

        • April 14, 2012 at 8:50 pm
        alicia
        Participant
        Hi, I’ve also had three primaries total (2 in one year) and a bunch of dysplastic lesions removed. All of my melanomas have been amelanotic which probably is why they weren’t diagnosed as early since they don’t have that typical ugly duckling appearance. My first melanoma was >2.3mm Clark’s IV at least and spread to lymph nodes(stageIII) my second melanoma was stage 1 Clark’s II 0.59mm and my third was at least clarks IV and at least 1mm at biopsy(dr did shave bx cause she didn’t think much of it other than she wasn’t sure what it was so she didn’t get the deep border of the lesion in the shave biopsy). After wide excision was done I still had 2.3mm residual melanoma on me. This is why all melanoma patients should have punch biopsies. So I’ve had a stage 3, stage 1and stage 2 primary melanoma and 2 mild-moderate atypical lesions and 2 severely dysplastic vs Mel in situ lesions. I’m currently awaiting results from a punch biopsy I just had on Thursday. I hope it’s good:-) seems like I’m seeing more people with mult primaries lately. So glad yours are being caught early and you are educated on this disease:-) best of luck

        Alicia

      • April 13, 2012 at 8:01 pm
      AngelaM
      Participant
      Hi Mary
      I had 3 primaries in 2 years. 1st was in situ, 2nd was 0.24mm Clark II and 3rd was 0.45mm Clark III in Oct 2011. I had similar questions and Janner too posted a reply to my questions. I also spent a lot of time researching, speaking to fellow melanoma sufferers and my doctors. I live in South Africa where melanoma is quite common. I didn’t know this until I started asking all these questions. My doctors looked at me as if I was crazy when I said that according to the internet most people only ever get 1 melanoma. They said most of their patients get multiple primaries, and these are arguably South Africa’s best skin cancer specialists. I expect to get more, but I also expect to catch them early, as should you. You are on the good side of melanoma. You just have to stay there – which you will since you are informed.

      Best of luck
      Angela

      • April 13, 2012 at 8:01 pm
      AngelaM
      Participant
      Hi Mary
      I had 3 primaries in 2 years. 1st was in situ, 2nd was 0.24mm Clark II and 3rd was 0.45mm Clark III in Oct 2011. I had similar questions and Janner too posted a reply to my questions. I also spent a lot of time researching, speaking to fellow melanoma sufferers and my doctors. I live in South Africa where melanoma is quite common. I didn’t know this until I started asking all these questions. My doctors looked at me as if I was crazy when I said that according to the internet most people only ever get 1 melanoma. They said most of their patients get multiple primaries, and these are arguably South Africa’s best skin cancer specialists. I expect to get more, but I also expect to catch them early, as should you. You are on the good side of melanoma. You just have to stay there – which you will since you are informed.

      Best of luck
      Angela

      • July 13, 2012 at 12:21 am
      Sia
      Participant
      I have had 7 primaries in 16 years. All of them early. I get scared and freaked every time. But like the previous posts say I eventually find a tentative peace. That peace is helped by 4 to 6 trips to the derm every year, and many biopsies.and chest X-rays and blood work once a year
      • July 13, 2012 at 12:21 am
      Sia
      Participant
      I have had 7 primaries in 16 years. All of them early. I get scared and freaked every time. But like the previous posts say I eventually find a tentative peace. That peace is helped by 4 to 6 trips to the derm every year, and many biopsies.and chest X-rays and blood work once a year
      • July 13, 2012 at 12:21 am
      Sia
      Participant
      I have had 7 primaries in 16 years. All of them early. I get scared and freaked every time. But like the previous posts say I eventually find a tentative peace. That peace is helped by 4 to 6 trips to the derm every year, and many biopsies.and chest X-rays and blood work once a year
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