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- November 2, 2016 at 12:12 pm
Hi
Yesterday my Dermatologist told me that I have a 3rd primary melanoma on my back. My first was in 1997 (Clark II Breslow .75), the 2nd was in 1999 melanoma "insitu" on shoulder. Then 17 years of no problems. Now I have a 3rd primary. I haven't seen the lab report but the Breslow is .55. This one is on my back. I will be scheduling the third WLE today. The Dr said this being a third primary is somewhat unusual. That made me wonder if there is any specific type of testing that can be done. ie genetic? How unusual is 3 seperate primaries? Should I ask for a PET Scan?
Thanks
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- November 2, 2016 at 2:42 pm
Hi,
Sorry to hear aout your third primary.
The Genomel consortium in Europe has conducted research into familial problems and increased vunerability to melanoma. http://www.genomel.org/
Another link for the genetic linfo- http://www.genomel.org/info-for-patients/having-a-family-history-of-melanoma/#contentjump
The research here seems to say that maintaining normal range vit d is protective.
All that the genetic research reveals is that some folks are at higher risk but the behaviours that are recommended remain the same even if you are low risk.
The genetic testing of the melanoma may reveal if it is BRAF mutated which gives you more treatment options were it to progress,
Does the doc want to do a slnb ? This gives the Uk guidlines and sets out reasons for and against. https://www.nice.org.uk/guidance/ng14/chapter/1-recommendations
It seems itchy or ulcerated melanomas are more likely to progress to the next stage so if this was the case even though the third one is thin slnb might be a consideration.
best of luck
Deb
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- November 2, 2016 at 2:42 pm
Hi,
Sorry to hear aout your third primary.
The Genomel consortium in Europe has conducted research into familial problems and increased vunerability to melanoma. http://www.genomel.org/
Another link for the genetic linfo- http://www.genomel.org/info-for-patients/having-a-family-history-of-melanoma/#contentjump
The research here seems to say that maintaining normal range vit d is protective.
All that the genetic research reveals is that some folks are at higher risk but the behaviours that are recommended remain the same even if you are low risk.
The genetic testing of the melanoma may reveal if it is BRAF mutated which gives you more treatment options were it to progress,
Does the doc want to do a slnb ? This gives the Uk guidlines and sets out reasons for and against. https://www.nice.org.uk/guidance/ng14/chapter/1-recommendations
It seems itchy or ulcerated melanomas are more likely to progress to the next stage so if this was the case even though the third one is thin slnb might be a consideration.
best of luck
Deb
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- November 2, 2016 at 3:42 pm
Thanks Deb
The dermatologist did not recommend SNB but I have not met the surgeon yet.. The melanoma has been itchy. It was removed for pathology but the site still itches..
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- November 2, 2016 at 3:42 pm
Thanks Deb
The dermatologist did not recommend SNB but I have not met the surgeon yet.. The melanoma has been itchy. It was removed for pathology but the site still itches..
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- November 2, 2016 at 3:42 pm
Thanks Deb
The dermatologist did not recommend SNB but I have not met the surgeon yet.. The melanoma has been itchy. It was removed for pathology but the site still itches..
-
- November 2, 2016 at 2:42 pm
Hi,
Sorry to hear aout your third primary.
The Genomel consortium in Europe has conducted research into familial problems and increased vunerability to melanoma. http://www.genomel.org/
Another link for the genetic linfo- http://www.genomel.org/info-for-patients/having-a-family-history-of-melanoma/#contentjump
The research here seems to say that maintaining normal range vit d is protective.
All that the genetic research reveals is that some folks are at higher risk but the behaviours that are recommended remain the same even if you are low risk.
The genetic testing of the melanoma may reveal if it is BRAF mutated which gives you more treatment options were it to progress,
Does the doc want to do a slnb ? This gives the Uk guidlines and sets out reasons for and against. https://www.nice.org.uk/guidance/ng14/chapter/1-recommendations
It seems itchy or ulcerated melanomas are more likely to progress to the next stage so if this was the case even though the third one is thin slnb might be a consideration.
best of luck
Deb
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- November 2, 2016 at 5:25 pm
I've had three primaries, similar in depth to yours. (.58mm, in situ, .88mm). I do have a genetic defect CDKN2A that puts me at higher risk for melanoma. However, it changes nothing on my followup. Skin checks every 6 months for life. PET scans only detect tumors over 5+ mm so are really no use for early stagers. BTW, a study in Australia actually showed people with multiple primaries had better survival stats. Don't get too discouraged. My last primary was 15 years ago and I know it would be a blow to have another. I have not had a SLNB on any of mine. My 1st primary (1992) was prior to that technology and my third (2001) was still under 1mm which was the guideline used at my institution. Three isn't all that unusual but having three does raise the possibility of a defect similar to mine. (About 10% of melanomas are thought to come from a genetic defect so the club is a little exclusive).
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- November 2, 2016 at 5:25 pm
I've had three primaries, similar in depth to yours. (.58mm, in situ, .88mm). I do have a genetic defect CDKN2A that puts me at higher risk for melanoma. However, it changes nothing on my followup. Skin checks every 6 months for life. PET scans only detect tumors over 5+ mm so are really no use for early stagers. BTW, a study in Australia actually showed people with multiple primaries had better survival stats. Don't get too discouraged. My last primary was 15 years ago and I know it would be a blow to have another. I have not had a SLNB on any of mine. My 1st primary (1992) was prior to that technology and my third (2001) was still under 1mm which was the guideline used at my institution. Three isn't all that unusual but having three does raise the possibility of a defect similar to mine. (About 10% of melanomas are thought to come from a genetic defect so the club is a little exclusive).
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- November 3, 2016 at 2:24 am
I'm another in the three melanoma club. Like Janner, I have had three thin melanomas. In my case, one in situ, one 0.17mm, one 0.33mm – so one stage 0 and two stage 1. I have never had genetic testing and when I've asked doctors they don't seem to recommend it (I'm in Australia so multiple melanomas are perhaps reasonably common). My dr said the most she has removed from one patient is five, though there are people on the boards with more than that. I remember seeing an interview with one elderly lady in Australia – it was about her lawn bowling activities – but in passing she mentioned having her eighth melanoma removed. It's never held her back: people with multiple melanomas tend to be super vigilant with skin checks so any new ones are found early and thin. I'm only one year out from having my three removed (all found/removed in the same year), whereas I think Janner is 23 years out from original diagnosis and as she says 15 years out from last diagnosis. So, hopefully three is the lucky last for us all. Chances are it is, I think the % of people getting more than three drops and drops and drops to very low, very improbable numbers. All the best, friend – what a shame that third one wasn't caught in situ. In my experience, an in situ diagnosis is infinitely less stressful than a melanoma which has become invasive, even very thin melanomas. Who knows, perhaps we will be very useful to science one day – there are so few of us with multiple melanomas, we can take comfort in the fact that our survival stats are better (we seem to develop some kind of immunity) AND perhaps one day we can help out in science studies. I would happily participate and do my bit in the fight for a cure or much earlier detection (eg in situ detection).
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- November 3, 2016 at 2:24 am
I'm another in the three melanoma club. Like Janner, I have had three thin melanomas. In my case, one in situ, one 0.17mm, one 0.33mm – so one stage 0 and two stage 1. I have never had genetic testing and when I've asked doctors they don't seem to recommend it (I'm in Australia so multiple melanomas are perhaps reasonably common). My dr said the most she has removed from one patient is five, though there are people on the boards with more than that. I remember seeing an interview with one elderly lady in Australia – it was about her lawn bowling activities – but in passing she mentioned having her eighth melanoma removed. It's never held her back: people with multiple melanomas tend to be super vigilant with skin checks so any new ones are found early and thin. I'm only one year out from having my three removed (all found/removed in the same year), whereas I think Janner is 23 years out from original diagnosis and as she says 15 years out from last diagnosis. So, hopefully three is the lucky last for us all. Chances are it is, I think the % of people getting more than three drops and drops and drops to very low, very improbable numbers. All the best, friend – what a shame that third one wasn't caught in situ. In my experience, an in situ diagnosis is infinitely less stressful than a melanoma which has become invasive, even very thin melanomas. Who knows, perhaps we will be very useful to science one day – there are so few of us with multiple melanomas, we can take comfort in the fact that our survival stats are better (we seem to develop some kind of immunity) AND perhaps one day we can help out in science studies. I would happily participate and do my bit in the fight for a cure or much earlier detection (eg in situ detection).
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- November 3, 2016 at 2:24 am
I'm another in the three melanoma club. Like Janner, I have had three thin melanomas. In my case, one in situ, one 0.17mm, one 0.33mm – so one stage 0 and two stage 1. I have never had genetic testing and when I've asked doctors they don't seem to recommend it (I'm in Australia so multiple melanomas are perhaps reasonably common). My dr said the most she has removed from one patient is five, though there are people on the boards with more than that. I remember seeing an interview with one elderly lady in Australia – it was about her lawn bowling activities – but in passing she mentioned having her eighth melanoma removed. It's never held her back: people with multiple melanomas tend to be super vigilant with skin checks so any new ones are found early and thin. I'm only one year out from having my three removed (all found/removed in the same year), whereas I think Janner is 23 years out from original diagnosis and as she says 15 years out from last diagnosis. So, hopefully three is the lucky last for us all. Chances are it is, I think the % of people getting more than three drops and drops and drops to very low, very improbable numbers. All the best, friend – what a shame that third one wasn't caught in situ. In my experience, an in situ diagnosis is infinitely less stressful than a melanoma which has become invasive, even very thin melanomas. Who knows, perhaps we will be very useful to science one day – there are so few of us with multiple melanomas, we can take comfort in the fact that our survival stats are better (we seem to develop some kind of immunity) AND perhaps one day we can help out in science studies. I would happily participate and do my bit in the fight for a cure or much earlier detection (eg in situ detection).
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- November 2, 2016 at 5:25 pm
I've had three primaries, similar in depth to yours. (.58mm, in situ, .88mm). I do have a genetic defect CDKN2A that puts me at higher risk for melanoma. However, it changes nothing on my followup. Skin checks every 6 months for life. PET scans only detect tumors over 5+ mm so are really no use for early stagers. BTW, a study in Australia actually showed people with multiple primaries had better survival stats. Don't get too discouraged. My last primary was 15 years ago and I know it would be a blow to have another. I have not had a SLNB on any of mine. My 1st primary (1992) was prior to that technology and my third (2001) was still under 1mm which was the guideline used at my institution. Three isn't all that unusual but having three does raise the possibility of a defect similar to mine. (About 10% of melanomas are thought to come from a genetic defect so the club is a little exclusive).
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