Interested in hearing from others with multiple primaries and FAMMM/Atypical Mole Syndrome

My mom and sister both have multiple primary melanomas (my mom has had 4, my sister 2).  My sister and I both have atypical mole syndrome (I've lost count how many atypical moles my sister has had removed).  I've had 4 atypical moles removed and countless biopsies, no melanoma yet. 

With that being said, all three of us just take it in stride.  There is nothing that we can do about our situation, except skin checks on our own and seeing our dermatologists regularly .  Right now, all three of us go every six months (unless we find something questionable, then we make an earlier appointment).  I admit, I can be a little fanatical about checking my moles for change at times, but I think that's par for the course 🙂

Carrie

mom stage IIIB (4 primaries)

sister stage IA (2 primaries)

My mom and sister both have multiple primary melanomas (my mom has had 4, my sister 2).  My sister and I both have atypical mole syndrome (I've lost count how many atypical moles my sister has had removed).  I've had 4 atypical moles removed and countless biopsies, no melanoma yet. 

With that being said, all three of us just take it in stride.  There is nothing that we can do about our situation, except skin checks on our own and seeing our dermatologists regularly .  Right now, all three of us go every six months (unless we find something questionable, then we make an earlier appointment).  I admit, I can be a little fanatical about checking my moles for change at times, but I think that's par for the course 🙂

Carrie

mom stage IIIB (4 primaries)

sister stage IA (2 primaries)

I've had 3 primaries, but don't have the atypical mole syndrome.  All my biopsies to date have been atypical, but I have less than 50 moles so don't "qualify" for the syndrome.  I do, however, have the CDKN2A mutation for melanoma.  I was given a 76% lifetime risk of getting melanoma with this defect. 

Two things.  I would suggest you find someone who will photograph your moles.  With the syndrome, it is obvious that most of your moles are atypical to some degree.  But if you only biopsy the moles that CHANGE, you will be saving yourself a ton of cutting.  Find someone who does mole mapping where they actively compare moles to previous pics at each visit, or body photography where you have a baseline set of photos you can compare against.  I've had both at different times.  I have to say it helps to have an "independent eye".  Those photographs give me a lot of comfort knowing that I have something to compare against.  Sometimes, my imaginations gets the best of me and I notice a new mole or I think something has changed.  Pull out the photos and…. nothing.  It keeps me sane.

Second.  People with multiple primaries actually have better survival statistics than those with only one.  Several studies have shown this.

The TA-90 test was never approved because it was not reliable.  Too many false positives and negatives.  So just because you tested positive at one time means nothing now.  I wouldn't put any more anxiety into that one.  If it was really predictive for melanoma mets, it would have been approved.

Best wishes,

Janner

3 MM primaries, stage I since 1992 (age 29 at first diagnosis)

I've had 3 primaries, but don't have the atypical mole syndrome.  All my biopsies to date have been atypical, but I have less than 50 moles so don't "qualify" for the syndrome.  I do, however, have the CDKN2A mutation for melanoma.  I was given a 76% lifetime risk of getting melanoma with this defect. 

Two things.  I would suggest you find someone who will photograph your moles.  With the syndrome, it is obvious that most of your moles are atypical to some degree.  But if you only biopsy the moles that CHANGE, you will be saving yourself a ton of cutting.  Find someone who does mole mapping where they actively compare moles to previous pics at each visit, or body photography where you have a baseline set of photos you can compare against.  I've had both at different times.  I have to say it helps to have an "independent eye".  Those photographs give me a lot of comfort knowing that I have something to compare against.  Sometimes, my imaginations gets the best of me and I notice a new mole or I think something has changed.  Pull out the photos and…. nothing.  It keeps me sane.

Second.  People with multiple primaries actually have better survival statistics than those with only one.  Several studies have shown this.

The TA-90 test was never approved because it was not reliable.  Too many false positives and negatives.  So just because you tested positive at one time means nothing now.  I wouldn't put any more anxiety into that one.  If it was really predictive for melanoma mets, it would have been approved.

Best wishes,

Janner

3 MM primaries, stage I since 1992 (age 29 at first diagnosis)

I have had 6 primaries and also have been diagnosed with dysplastic nevus syndrome.  My journey started in 1979!  I've also had more moles than I can count removed along with way too many wide excisions. I do have the photo's that Janner talked about and they are compared to my moles when I feel there is a change.

I'm going to a new derm because we have moved and he took his own pictures after comparing my old ones. Now when I go he has them on his computer screen and can enlarge them as needed.  Actually I have an appointment in a few hours with him.  I have gone every 3 months for over 30 years. There may have been a few years when I didn't have issues and went to 6 months spacing. 

My original mel did recur on the scar line 27 years later so you do have to remain vigilant! However, it sounds as if yours have all been found very thin.   I did not change my life style and instead used it as a warning to go and enjoy my life because you never know what will happen. I'm not saying that I eat horrible (I don't) but I also did not change. Emotionally I would have my ups and downs when I would have a new mel come along but I refused to let the thoughts drag me down for long.

This website while is great and has really good and current info can also be a scary place for those with thin melanomas. Most of the people who post here have advanced disease. We do have a few Stage I folks who have a wealth of knowledge and help newcomers. Yours will hopefully never recur and while you need to be much more sun careful you need to be careful of being overtaken with the fear. 

Linda

Stage IV stable

I have had 6 primaries and also have been diagnosed with dysplastic nevus syndrome.  My journey started in 1979!  I've also had more moles than I can count removed along with way too many wide excisions. I do have the photo's that Janner talked about and they are compared to my moles when I feel there is a change.

I'm going to a new derm because we have moved and he took his own pictures after comparing my old ones. Now when I go he has them on his computer screen and can enlarge them as needed.  Actually I have an appointment in a few hours with him.  I have gone every 3 months for over 30 years. There may have been a few years when I didn't have issues and went to 6 months spacing. 

My original mel did recur on the scar line 27 years later so you do have to remain vigilant! However, it sounds as if yours have all been found very thin.   I did not change my life style and instead used it as a warning to go and enjoy my life because you never know what will happen. I'm not saying that I eat horrible (I don't) but I also did not change. Emotionally I would have my ups and downs when I would have a new mel come along but I refused to let the thoughts drag me down for long.

This website while is great and has really good and current info can also be a scary place for those with thin melanomas. Most of the people who post here have advanced disease. We do have a few Stage I folks who have a wealth of knowledge and help newcomers. Yours will hopefully never recur and while you need to be much more sun careful you need to be careful of being overtaken with the fear. 

Linda

Stage IV stable

Hi,

I see that you have considered Mole Mapping/ Full Body Photography. This may help you so you do not have to undergo so many biopsies in the future. Remember too, since your biopsies came back ranging from moderately atypical nevi and one melanoma in situ, you are still stage 1 which is good as far as melanoma goes.

A little history on myself: I was initially diagnosed September 2008, and to date I have had two stage 1b melanomas and one moderately atypical mole removed.

I have hundreds of moles, but I decided not to go the mole mapping/photography route as I feel I know my body better than anyone. There were/are really only six moles (now five) I am really concerned about at this time anyway, so I watch them closely and use my digital camera and photograph them every few months looking for change. I had one of the six removed several months ago and it came back moderately atypical and a WLE was performed. My derm leaves mildly atypical alone and watches for change. He re-excises moderate and severe. Some derms even leave moderately atypical and watch them for change, and remove only severely atypical ones. (seems your doctor goes this route)

I remember researching the TA-90 test some time ago. I recall one of the studies that was all over the internet which showed that of the 56 patients, there were 14 false-positive and 13 false-negative results, (which was a significant improvement over other malignant tumor marker results), but still not good enough to be FDA approved. So, I decided not to put too much into the TA-90 test in terms of reliability. You shouldn’t either!

Glad you stopped seeing the naturopath too. It seemed perhaps they were feeding off of your emotions.

I guess for me the bottom line is that I know myself better than any doctor, and I have decided not to let melanoma run my life. I got married last year and I also have two beautiful grandchildren. So YOU try to relax, as the stress and depression of all this is most likely what is giving you your headaches and not brain mets!

Be cautious what you read here as well, as all stages are covered here on this forum.

Michael-stage 1b age 46 and living life with two primaries and one moderately dysplastic nevus.

P.S. As you mentioned in your second post, it seems you are depressed. Stress and/or depression will wear on you and make you fatigued. And so much more! Perhaps some anti-anxiety/ depression meds are in order? (they are not the same thing) I recall when first diagnosed it hit me like a ton of bricks too. Although I did not become depressed, I did find myself obsessed with research. For me personally, the more I know about something the better I feel. I know many are not that way though.

Hi,

I see that you have considered Mole Mapping/ Full Body Photography. This may help you so you do not have to undergo so many biopsies in the future. Remember too, since your biopsies came back ranging from moderately atypical nevi and one melanoma in situ, you are still stage 1 which is good as far as melanoma goes.

A little history on myself: I was initially diagnosed September 2008, and to date I have had two stage 1b melanomas and one moderately atypical mole removed.

I have hundreds of moles, but I decided not to go the mole mapping/photography route as I feel I know my body better than anyone. There were/are really only six moles (now five) I am really concerned about at this time anyway, so I watch them closely and use my digital camera and photograph them every few months looking for change. I had one of the six removed several months ago and it came back moderately atypical and a WLE was performed. My derm leaves mildly atypical alone and watches for change. He re-excises moderate and severe. Some derms even leave moderately atypical and watch them for change, and remove only severely atypical ones. (seems your doctor goes this route)

I remember researching the TA-90 test some time ago. I recall one of the studies that was all over the internet which showed that of the 56 patients, there were 14 false-positive and 13 false-negative results, (which was a significant improvement over other malignant tumor marker results), but still not good enough to be FDA approved. So, I decided not to put too much into the TA-90 test in terms of reliability. You shouldn’t either!

Glad you stopped seeing the naturopath too. It seemed perhaps they were feeding off of your emotions.

I guess for me the bottom line is that I know myself better than any doctor, and I have decided not to let melanoma run my life. I got married last year and I also have two beautiful grandchildren. So YOU try to relax, as the stress and depression of all this is most likely what is giving you your headaches and not brain mets!

Be cautious what you read here as well, as all stages are covered here on this forum.

Michael-stage 1b age 46 and living life with two primaries and one moderately dysplastic nevus.

P.S. As you mentioned in your second post, it seems you are depressed. Stress and/or depression will wear on you and make you fatigued. And so much more! Perhaps some anti-anxiety/ depression meds are in order? (they are not the same thing) I recall when first diagnosed it hit me like a ton of bricks too. Although I did not become depressed, I did find myself obsessed with research. For me personally, the more I know about something the better I feel. I know many are not that way though.

I go to the derm at least every 3 months. The doctors I see are great but I am usually the one who finds the mels. It is all about change in my case because all of my moles are irregular.

I have pictures of my skin but I have so many moles that it is tough to keep track of all of them.

To help with the horrible anxiety of this syndrome I take anti anxiety meds–lexapro 10 mg and the very occasional Xanax. Also, I am taking an aggressive approach with biopsies. It is not fun, but I have a few moles taken off every 3 months. I have one derm who does a beautiful job with shaving as little as possible so the scars eventually blend in with my cornucopia of spots. I also have heard that people with multiple early stage primaries have decent survival rates– because they are more likely to continue with skin screenings to further early detection. I try to remind myself of this when I start to go negative.

Also, when I was first diagnosed when I was in my late 20s I had a great team of doctors at the uw in Seattle who got together and told me as a group that I could live a relatively normal life. I would have to expect more primaries but they should continue to be early stage if I stay vigilant with self exams and with derm visits.

My eating habits over the years has moved from a terrible amount of sugar to a gradually move to more fruit and veg. I try to limit alcohol because it is a depressant and I read that alcohol is connected to an increase in skin cancer.

Ultimately cancer sucks. It is a very grim club to belong to. Thanks for reaching out to us with multiple primaries.

I go to the derm at least every 3 months. The doctors I see are great but I am usually the one who finds the mels. It is all about change in my case because all of my moles are irregular.

I have pictures of my skin but I have so many moles that it is tough to keep track of all of them.

To help with the horrible anxiety of this syndrome I take anti anxiety meds–lexapro 10 mg and the very occasional Xanax. Also, I am taking an aggressive approach with biopsies. It is not fun, but I have a few moles taken off every 3 months. I have one derm who does a beautiful job with shaving as little as possible so the scars eventually blend in with my cornucopia of spots. I also have heard that people with multiple early stage primaries have decent survival rates– because they are more likely to continue with skin screenings to further early detection. I try to remind myself of this when I start to go negative.

Also, when I was first diagnosed when I was in my late 20s I had a great team of doctors at the uw in Seattle who got together and told me as a group that I could live a relatively normal life. I would have to expect more primaries but they should continue to be early stage if I stay vigilant with self exams and with derm visits.

My eating habits over the years has moved from a terrible amount of sugar to a gradually move to more fruit and veg. I try to limit alcohol because it is a depressant and I read that alcohol is connected to an increase in skin cancer.

Ultimately cancer sucks. It is a very grim club to belong to. Thanks for reaching out to us with multiple primaries.

I go to the derm at least every 3 months. The doctors I see are great but I am usually the one who finds the mels. It is all about change in my case because all of my moles are irregular.

I have pictures of my skin but I have so many moles that it is tough to keep track of all of them.

To help with the horrible anxiety of this syndrome I take anti anxiety meds–lexapro 10 mg and the very occasional Xanax. Also, I am taking an aggressive approach with biopsies. It is not fun, but I have a few moles taken off every 3 months. I have one derm who does a beautiful job with shaving as little as possible so the scars eventually blend in with my cornucopia of spots. I also have heard that people with multiple early stage primaries have decent survival rates– because they are more likely to continue with skin screenings to further early detection. I try to remind myself of this when I start to go negative.

Also, when I was first diagnosed when I was in my late 20s I had a great team of doctors at the uw in Seattle who got together and told me as a group that I could live a relatively normal life. I would have to expect more primaries but they should continue to be early stage if I stay vigilant with self exams and with derm visits.

My eating habits over the years has moved from a terrible amount of sugar to a gradually move to more fruit and veg. I try to limit alcohol because it is a depressant and I read that alcohol is connected to an increase in skin cancer.

Ultimately cancer sucks. It is a very grim club to belong to. Thanks for reaching out to us with multiple primaries.

My mother was dx’d just a few months after I tested positive for CDKN2A with MCR1. That test came about 17 years after my first primary. Between 2003 my first primary and my mom’s first, I’ve had 3 other primaries and about 12 to 15 biopsies (lost count). Most of them come up Atypical.

It’s pretty easy to pick out a Melanoma from an Atypical because i dont have a tonne of moles (considering most photos of FAMMM) … it’s the itch. If it’s itching then it’s going to punch biopsy.

They were not expecting me to come up CDKN2A+ mainly because I don’t have a lot of moles. The moles I do have are all baby Melanoma’s in the making and we take an if in dobut cut it out approach. I usually have a gap of 7 years between primary happenings and events of excision.

My deepest breslow has been 6mm ulcerated. Consistent with CDKN2A I get Nodular or SSM and thankfully more SSM than Nodular.

Mostly on my legs, my more sun exposed areas shall we say turn up less primaries.

Recently my husband has been diagnosed with his second primary melanoma, stage 1a. At this point, not sure we need genetic testing to tell us that my husband is predisposed for skin cancer, but it is difficult to be continuously dealing with new issues.

Any advanced stage patients out there with new primaries? any unique treatments suggested or done given previous advanced cancer? thanks.