Janner – Curious about terminology you use

I have the p16 genetic defect for melanoma (CDKN2A).  It gave me a 76% lifetime risk of getting melanoma.  I'm at a much higher probability than most to have another primary.  I might be lucky and it never happens again, but it's easier for me to think it will and then I am always paying attention.

Most early stagers probably are "cured" after surgery.  Obviously, those that visit this site understand that might be a misnomer.  But the ones who aren't cured are definitely a vast minority compared to those that are.  Again, I prefer NED because I know something COULD happen at a later date.  It keeps me on my toes instead of giving me that false sense of security that it's gone forever.  I do NOT spend time worrying about it – I try to keep it in perspective.  But I am aware that the possibility exists that it could come back.

Janner

No.  Only 2-4% of the melanoma population have this defect.  I was tested for it as part of a clinical trial for familial high risk melanoma.  The reason I was included was because of my 3 primaries.  (I'm adopted so my family history is unknown).  If I would have had a very strong family history (immediate family members in each generation with melanoma or pancreatic cancer), then that would have been another reason for inclusion.  So if you do not have an EXTREMELY strong family history of melanoma, then the CDKN2A p16 defect is probably not something to consider.

No.  Only 2-4% of the melanoma population have this defect.  I was tested for it as part of a clinical trial for familial high risk melanoma.  The reason I was included was because of my 3 primaries.  (I'm adopted so my family history is unknown).  If I would have had a very strong family history (immediate family members in each generation with melanoma or pancreatic cancer), then that would have been another reason for inclusion.  So if you do not have an EXTREMELY strong family history of melanoma, then the CDKN2A p16 defect is probably not something to consider.

In answer to the original poster, I have found if I say to the general public that I HAD melanoma they immediately think “oh glad they removed it and you are fine.” If you are fine why do you go to the dermatologist so often? They just don’t understand melanoma at all. Heck I don’t even understand melanoma.

In answer to the original poster, I have found if I say to the general public that I HAD melanoma they immediately think “oh glad they removed it and you are fine.” If you are fine why do you go to the dermatologist so often? They just don’t understand melanoma at all. Heck I don’t even understand melanoma.

My current followup is no different than anyone elses so for melanoma, it really makes no difference in knowing I had the p16 gene or not.  Truthfully, I did the study as a "give back to science" more than anything else.  I have no children so the results really meant nothing to me.  However, there is one glitch.  If you have the p16 mutation, you are also at an increased risk for other cancers – the second highest risk being pancreatic cancer.  Based on my particular mutation, I was given an 11% risk for pancreatic cancer.  The average person's risk is <1%.  Some variations of the p16 mutation may increase the risk for pancreatic cancer to 17%.  So, I originally went to a high risk pancreatic cancer clinic and spoke with their doc.  They wanted to do baseline scans.  Wanted bloodwork for their study, too, but my veins would not cooperate.  Anyway, I did a endoscopic ultrasound and MRI.  Ideally, I would have followup scans periodically.  But you try getting insurance to pay for a scan because you are positive for a genetic mutation.  First off, I'd prefer the insurance company not know I have this mutation.  And second, they won't pay for those type of scans.  Even for my first scan, the doctors used "unexplained weight loss" as the reason even though I had previously lost weight on purpose.  There are no real symptoms you can watch for with pancreatic cancer.  By the time you have symptoms, it is almost always very advanced.  So you either have to have a very generous insurance company or be able to fudge to get scans to watch for this type of cancer.  I don't do scans. 

As for the familial risk, at the time I did this study they were looking for families with at least one family member in three continuous generations.  Basically not looking for multiple siblings or an aunt or uncle to have it, but grandparent, parent, and you.  Either 3 straight generations or 3+ primaries.  That was quite a few years ago.  They may have refined their requirements by now.   It's a very small subset of people and there are other reasons why melanoma may run in families that is not directly related to a melanoma mutation.  Dysplastic Nevus Syndrome is probably the most obvious other example.  

My current followup is no different than anyone elses so for melanoma, it really makes no difference in knowing I had the p16 gene or not.  Truthfully, I did the study as a "give back to science" more than anything else.  I have no children so the results really meant nothing to me.  However, there is one glitch.  If you have the p16 mutation, you are also at an increased risk for other cancers – the second highest risk being pancreatic cancer.  Based on my particular mutation, I was given an 11% risk for pancreatic cancer.  The average person's risk is <1%.  Some variations of the p16 mutation may increase the risk for pancreatic cancer to 17%.  So, I originally went to a high risk pancreatic cancer clinic and spoke with their doc.  They wanted to do baseline scans.  Wanted bloodwork for their study, too, but my veins would not cooperate.  Anyway, I did a endoscopic ultrasound and MRI.  Ideally, I would have followup scans periodically.  But you try getting insurance to pay for a scan because you are positive for a genetic mutation.  First off, I'd prefer the insurance company not know I have this mutation.  And second, they won't pay for those type of scans.  Even for my first scan, the doctors used "unexplained weight loss" as the reason even though I had previously lost weight on purpose.  There are no real symptoms you can watch for with pancreatic cancer.  By the time you have symptoms, it is almost always very advanced.  So you either have to have a very generous insurance company or be able to fudge to get scans to watch for this type of cancer.  I don't do scans. 

As for the familial risk, at the time I did this study they were looking for families with at least one family member in three continuous generations.  Basically not looking for multiple siblings or an aunt or uncle to have it, but grandparent, parent, and you.  Either 3 straight generations or 3+ primaries.  That was quite a few years ago.  They may have refined their requirements by now.   It's a very small subset of people and there are other reasons why melanoma may run in families that is not directly related to a melanoma mutation.  Dysplastic Nevus Syndrome is probably the most obvious other example.  

My current followup is no different than anyone elses so for melanoma, it really makes no difference in knowing I had the p16 gene or not.  Truthfully, I did the study as a "give back to science" more than anything else.  I have no children so the results really meant nothing to me.  However, there is one glitch.  If you have the p16 mutation, you are also at an increased risk for other cancers – the second highest risk being pancreatic cancer.  Based on my particular mutation, I was given an 11% risk for pancreatic cancer.  The average person's risk is <1%.  Some variations of the p16 mutation may increase the risk for pancreatic cancer to 17%.  So, I originally went to a high risk pancreatic cancer clinic and spoke with their doc.  They wanted to do baseline scans.  Wanted bloodwork for their study, too, but my veins would not cooperate.  Anyway, I did a endoscopic ultrasound and MRI.  Ideally, I would have followup scans periodically.  But you try getting insurance to pay for a scan because you are positive for a genetic mutation.  First off, I'd prefer the insurance company not know I have this mutation.  And second, they won't pay for those type of scans.  Even for my first scan, the doctors used "unexplained weight loss" as the reason even though I had previously lost weight on purpose.  There are no real symptoms you can watch for with pancreatic cancer.  By the time you have symptoms, it is almost always very advanced.  So you either have to have a very generous insurance company or be able to fudge to get scans to watch for this type of cancer.  I don't do scans. 

As for the familial risk, at the time I did this study they were looking for families with at least one family member in three continuous generations.  Basically not looking for multiple siblings or an aunt or uncle to have it, but grandparent, parent, and you.  Either 3 straight generations or 3+ primaries.  That was quite a few years ago.  They may have refined their requirements by now.   It's a very small subset of people and there are other reasons why melanoma may run in families that is not directly related to a melanoma mutation.  Dysplastic Nevus Syndrome is probably the most obvious other example.  

In answer to the original poster, I have found if I say to the general public that I HAD melanoma they immediately think “oh glad they removed it and you are fine.” If you are fine why do you go to the dermatologist so often? They just don’t understand melanoma at all. Heck I don’t even understand melanoma.

No.  Only 2-4% of the melanoma population have this defect.  I was tested for it as part of a clinical trial for familial high risk melanoma.  The reason I was included was because of my 3 primaries.  (I'm adopted so my family history is unknown).  If I would have had a very strong family history (immediate family members in each generation with melanoma or pancreatic cancer), then that would have been another reason for inclusion.  So if you do not have an EXTREMELY strong family history of melanoma, then the CDKN2A p16 defect is probably not something to consider.

I have the p16 genetic defect for melanoma (CDKN2A).  It gave me a 76% lifetime risk of getting melanoma.  I'm at a much higher probability than most to have another primary.  I might be lucky and it never happens again, but it's easier for me to think it will and then I am always paying attention.

Most early stagers probably are "cured" after surgery.  Obviously, those that visit this site understand that might be a misnomer.  But the ones who aren't cured are definitely a vast minority compared to those that are.  Again, I prefer NED because I know something COULD happen at a later date.  It keeps me on my toes instead of giving me that false sense of security that it's gone forever.  I do NOT spend time worrying about it – I try to keep it in perspective.  But I am aware that the possibility exists that it could come back.

Janner

I have the p16 genetic defect for melanoma (CDKN2A).  It gave me a 76% lifetime risk of getting melanoma.  I'm at a much higher probability than most to have another primary.  I might be lucky and it never happens again, but it's easier for me to think it will and then I am always paying attention.

Most early stagers probably are "cured" after surgery.  Obviously, those that visit this site understand that might be a misnomer.  But the ones who aren't cured are definitely a vast minority compared to those that are.  Again, I prefer NED because I know something COULD happen at a later date.  It keeps me on my toes instead of giving me that false sense of security that it's gone forever.  I do NOT spend time worrying about it – I try to keep it in perspective.  But I am aware that the possibility exists that it could come back.

Janner