› Forums › General Melanoma Community › Body Mapping & Photos
- This topic has 21 replies, 5 voices, and was last updated 8 years, 5 months ago by
mjanssentx.
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- December 10, 2015 at 3:36 am
HI there,
With a lot of help from some others here on the board, we worked out that my melanoma removed last week was a Stage 1a (Clark Level II, 0.4mm).
I am feeling great and the amount of information and support I have received from MRF and other Melanoma organisations in my city has been amazing!!
I was just wondering how everyone here keeps on track of their moles and tracks changes?
I have a lot of moles, freckles and age spots turning up all of the time. I downloaded one of those body mapping apps earlier today and took a few photos of some moles, before realizing that it is absolutely hopeless as I more moles than what I can even count..
My doctor tells me I have nearly every kind of mole imaginable.. I feel like a walking canvas!
It's really frustrating and I know I can ask my husband to help keep an eye on my back but I can't help but stress over everything I can't see. I have new moles appearing all of the time and I just don't know how I'm supposed to stay on top of this. Any tips or advice would be greatly appreciated!
I'm 32 with a history of melanoma in the family (grandfather & brother).
Is there any way of telling when will the moles might stop appearing? How do you all monitor everything?
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- December 10, 2015 at 6:05 am
My Mom had a genetics test. She has Stage IV and my sister, her sister and I have all been diagnosed with melanoma. We found out through the genetics testing that the melanoma is sun related not because of genetics, which was a relief. Our family has 12 types of cancer in 2 generations with 2 rare sarcomas, which we found out are both likely genetic. (We already know one is.)
After checking of that box, the best thing I can recommend is to talk to your dermatologist on your next appointment and set up a schedule to come in like I do. Right now, I see my every 3 months and while I don't have as many as you do I am sure your doctor has at least a few patients where he takes methodical photos of areas and can compare one set of photos vs those from other appointments.
If you or your family have access to genetic testing I'd get that done. My Mom had hers done at USC in Los Angeles and they were involved in a genetics research program and most if not all of it was covered because she was in the program. Other family members are going to have the tests now too because of the sarcoma and genetic profile not the melanoma.
Good Luck!
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- December 10, 2015 at 6:05 am
My Mom had a genetics test. She has Stage IV and my sister, her sister and I have all been diagnosed with melanoma. We found out through the genetics testing that the melanoma is sun related not because of genetics, which was a relief. Our family has 12 types of cancer in 2 generations with 2 rare sarcomas, which we found out are both likely genetic. (We already know one is.)
After checking of that box, the best thing I can recommend is to talk to your dermatologist on your next appointment and set up a schedule to come in like I do. Right now, I see my every 3 months and while I don't have as many as you do I am sure your doctor has at least a few patients where he takes methodical photos of areas and can compare one set of photos vs those from other appointments.
If you or your family have access to genetic testing I'd get that done. My Mom had hers done at USC in Los Angeles and they were involved in a genetics research program and most if not all of it was covered because she was in the program. Other family members are going to have the tests now too because of the sarcoma and genetic profile not the melanoma.
Good Luck!
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- December 10, 2015 at 6:05 am
My Mom had a genetics test. She has Stage IV and my sister, her sister and I have all been diagnosed with melanoma. We found out through the genetics testing that the melanoma is sun related not because of genetics, which was a relief. Our family has 12 types of cancer in 2 generations with 2 rare sarcomas, which we found out are both likely genetic. (We already know one is.)
After checking of that box, the best thing I can recommend is to talk to your dermatologist on your next appointment and set up a schedule to come in like I do. Right now, I see my every 3 months and while I don't have as many as you do I am sure your doctor has at least a few patients where he takes methodical photos of areas and can compare one set of photos vs those from other appointments.
If you or your family have access to genetic testing I'd get that done. My Mom had hers done at USC in Los Angeles and they were involved in a genetics research program and most if not all of it was covered because she was in the program. Other family members are going to have the tests now too because of the sarcoma and genetic profile not the melanoma.
Good Luck!
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- December 10, 2015 at 3:26 pm
Find a doctor who does "mole mapping". Digital photos of all your moles at each visit. Sounds like you have dysplastic Nevis syndrome and that is who mole mapping was designed for. You are likely to continue getting new moles – nature of the syndrome. But try and find someone who specializes,in DNS and they can work with you to monitor everything.
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- December 10, 2015 at 3:26 pm
Find a doctor who does "mole mapping". Digital photos of all your moles at each visit. Sounds like you have dysplastic Nevis syndrome and that is who mole mapping was designed for. You are likely to continue getting new moles – nature of the syndrome. But try and find someone who specializes,in DNS and they can work with you to monitor everything.
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- December 10, 2015 at 3:26 pm
Find a doctor who does "mole mapping". Digital photos of all your moles at each visit. Sounds like you have dysplastic Nevis syndrome and that is who mole mapping was designed for. You are likely to continue getting new moles – nature of the syndrome. But try and find someone who specializes,in DNS and they can work with you to monitor everything.
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- December 10, 2015 at 4:57 pm
I was diagnosed in September with a Stage 1A mel (Breslow .5, no mitosis, Clark level III, no regression, no ulceration). I have lots of moles and like you, they're all different. I've had over 20 removed and most of them have been dysplastic to some degree. I wanted to be proactive so I can keep an eye on things myself as in all honesty I don't totally trust my doctor to identify a suspiscious mole (my gynecologist noticed my melanoma, not my dermatologist who I had seen probably 4 times in the months leading up to my diagnosis). I found a company, called Digital Derm, that does mole mapping photographs. My doctor gave me a referral but you don't need one. Digital Derm is out of South Carolina but they're at Emory in Atlanta twice a month. It costs around $400.00. I know at Stage 1A, my prognosis is very good, but at the same time, after reading so many stories about people who progressed from Stage 1A to Stage IV I still worry. I now have pictures of every area of my body and can refer to them if I think something has changed. Last month, I did have a mole that had darkened with a dark red circle underneath it and upon looking at the pictures got very concerned. It was removed (1st just a biopsy, but then a full excision as the pathologist said he couldn't 100% rule out melanoma), and thankfully it turned out to be a traumatized nevus (I had gone hiking and it apparently irritated this mole). If you don't live anywhere near the southeast, I'm sure there are other companies that must do this around the country.
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- December 10, 2015 at 7:36 pm
Thanks for all replies so far..
There is one company here in Australia that everyone seems to go to though it takes 4-6 months to get an appointment. I think some of the price might be subsidized by the government, which makes it popular and a little bit cheaper.
They do mole mapping, though I have heard the computers are unreliable and a few people I know who go have told me the company have 'lost' images of their moles several times now – how bad is that!!
The other thing is you wait 4-6 months to see someone and if they do a biopsy and it comes back as melanoma, you wait another 4-6 months to have it removed – they refuse to move you up on the waiting list.
It is insane!!
I wish so much I never had sunburns as a teen! I have had a few minor burns (forgetting to put sunscreen on).. though there was one really bad burn where we were travelling in a car for over an hour in the morning sun (topless car).. I had a dress with straps on and my wole upper back, arms, chest sizzled. I blistered badly and couldn't sleep or put pressure on the top half of my body without bursting blisters.
Even though melanoma has affected my family, I know this one bad burn puts me in a really bad position.. I could cry!! Now my upper back is where majority of the new moles are appearing.. My shoulders are badly freckled with light and dark freckles and some darker than others.. I even have age spots and pigmentation (white spots) on my upper chest, shoulders and upper back.
I am only in my early 30's and I dread what I have done to my skin, on top of this disease already affecting people in my family.
Sorry for the vent.. I didn't intend on that! Looks like today I am in regret-mode!
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- December 10, 2015 at 7:36 pm
Thanks for all replies so far..
There is one company here in Australia that everyone seems to go to though it takes 4-6 months to get an appointment. I think some of the price might be subsidized by the government, which makes it popular and a little bit cheaper.
They do mole mapping, though I have heard the computers are unreliable and a few people I know who go have told me the company have 'lost' images of their moles several times now – how bad is that!!
The other thing is you wait 4-6 months to see someone and if they do a biopsy and it comes back as melanoma, you wait another 4-6 months to have it removed – they refuse to move you up on the waiting list.
It is insane!!
I wish so much I never had sunburns as a teen! I have had a few minor burns (forgetting to put sunscreen on).. though there was one really bad burn where we were travelling in a car for over an hour in the morning sun (topless car).. I had a dress with straps on and my wole upper back, arms, chest sizzled. I blistered badly and couldn't sleep or put pressure on the top half of my body without bursting blisters.
Even though melanoma has affected my family, I know this one bad burn puts me in a really bad position.. I could cry!! Now my upper back is where majority of the new moles are appearing.. My shoulders are badly freckled with light and dark freckles and some darker than others.. I even have age spots and pigmentation (white spots) on my upper chest, shoulders and upper back.
I am only in my early 30's and I dread what I have done to my skin, on top of this disease already affecting people in my family.
Sorry for the vent.. I didn't intend on that! Looks like today I am in regret-mode!
-
- December 10, 2015 at 7:36 pm
Thanks for all replies so far..
There is one company here in Australia that everyone seems to go to though it takes 4-6 months to get an appointment. I think some of the price might be subsidized by the government, which makes it popular and a little bit cheaper.
They do mole mapping, though I have heard the computers are unreliable and a few people I know who go have told me the company have 'lost' images of their moles several times now – how bad is that!!
The other thing is you wait 4-6 months to see someone and if they do a biopsy and it comes back as melanoma, you wait another 4-6 months to have it removed – they refuse to move you up on the waiting list.
It is insane!!
I wish so much I never had sunburns as a teen! I have had a few minor burns (forgetting to put sunscreen on).. though there was one really bad burn where we were travelling in a car for over an hour in the morning sun (topless car).. I had a dress with straps on and my wole upper back, arms, chest sizzled. I blistered badly and couldn't sleep or put pressure on the top half of my body without bursting blisters.
Even though melanoma has affected my family, I know this one bad burn puts me in a really bad position.. I could cry!! Now my upper back is where majority of the new moles are appearing.. My shoulders are badly freckled with light and dark freckles and some darker than others.. I even have age spots and pigmentation (white spots) on my upper chest, shoulders and upper back.
I am only in my early 30's and I dread what I have done to my skin, on top of this disease already affecting people in my family.
Sorry for the vent.. I didn't intend on that! Looks like today I am in regret-mode!
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- December 10, 2015 at 7:39 pm
Sorry it wouldn't let me edit the post and I seem to have lost some of what I had typed..
I see a doctor at the skin cancer clinic and pay more to have biopsies and appointments. I do trust my doctor but he doesn't take photos and uses a hand-held microscope, which is fine… but I am just nervous I guess.
My next 3 montly appointment is in March – which although only a few weeks away really .. It will be here before I know it.. Still feels like a long time.
I might have to strip down and maybe ask my husband to take whole body shots or something.. It's the only thing I can think of.
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- December 10, 2015 at 7:39 pm
Sorry it wouldn't let me edit the post and I seem to have lost some of what I had typed..
I see a doctor at the skin cancer clinic and pay more to have biopsies and appointments. I do trust my doctor but he doesn't take photos and uses a hand-held microscope, which is fine… but I am just nervous I guess.
My next 3 montly appointment is in March – which although only a few weeks away really .. It will be here before I know it.. Still feels like a long time.
I might have to strip down and maybe ask my husband to take whole body shots or something.. It's the only thing I can think of.
-
- December 10, 2015 at 7:39 pm
Sorry it wouldn't let me edit the post and I seem to have lost some of what I had typed..
I see a doctor at the skin cancer clinic and pay more to have biopsies and appointments. I do trust my doctor but he doesn't take photos and uses a hand-held microscope, which is fine… but I am just nervous I guess.
My next 3 montly appointment is in March – which although only a few weeks away really .. It will be here before I know it.. Still feels like a long time.
I might have to strip down and maybe ask my husband to take whole body shots or something.. It's the only thing I can think of.
-
- December 10, 2015 at 4:57 pm
I was diagnosed in September with a Stage 1A mel (Breslow .5, no mitosis, Clark level III, no regression, no ulceration). I have lots of moles and like you, they're all different. I've had over 20 removed and most of them have been dysplastic to some degree. I wanted to be proactive so I can keep an eye on things myself as in all honesty I don't totally trust my doctor to identify a suspiscious mole (my gynecologist noticed my melanoma, not my dermatologist who I had seen probably 4 times in the months leading up to my diagnosis). I found a company, called Digital Derm, that does mole mapping photographs. My doctor gave me a referral but you don't need one. Digital Derm is out of South Carolina but they're at Emory in Atlanta twice a month. It costs around $400.00. I know at Stage 1A, my prognosis is very good, but at the same time, after reading so many stories about people who progressed from Stage 1A to Stage IV I still worry. I now have pictures of every area of my body and can refer to them if I think something has changed. Last month, I did have a mole that had darkened with a dark red circle underneath it and upon looking at the pictures got very concerned. It was removed (1st just a biopsy, but then a full excision as the pathologist said he couldn't 100% rule out melanoma), and thankfully it turned out to be a traumatized nevus (I had gone hiking and it apparently irritated this mole). If you don't live anywhere near the southeast, I'm sure there are other companies that must do this around the country.
-
- December 10, 2015 at 4:57 pm
I was diagnosed in September with a Stage 1A mel (Breslow .5, no mitosis, Clark level III, no regression, no ulceration). I have lots of moles and like you, they're all different. I've had over 20 removed and most of them have been dysplastic to some degree. I wanted to be proactive so I can keep an eye on things myself as in all honesty I don't totally trust my doctor to identify a suspiscious mole (my gynecologist noticed my melanoma, not my dermatologist who I had seen probably 4 times in the months leading up to my diagnosis). I found a company, called Digital Derm, that does mole mapping photographs. My doctor gave me a referral but you don't need one. Digital Derm is out of South Carolina but they're at Emory in Atlanta twice a month. It costs around $400.00. I know at Stage 1A, my prognosis is very good, but at the same time, after reading so many stories about people who progressed from Stage 1A to Stage IV I still worry. I now have pictures of every area of my body and can refer to them if I think something has changed. Last month, I did have a mole that had darkened with a dark red circle underneath it and upon looking at the pictures got very concerned. It was removed (1st just a biopsy, but then a full excision as the pathologist said he couldn't 100% rule out melanoma), and thankfully it turned out to be a traumatized nevus (I had gone hiking and it apparently irritated this mole). If you don't live anywhere near the southeast, I'm sure there are other companies that must do this around the country.
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- December 12, 2015 at 2:29 am
Kare – the easiest and cheapest advise I can give is to take your own picture in the privacy of your home (mom, dad, spouse, kid…anybody can do them) Do all angles both close and distant. Save them to a flash drive….costs virtually nothing and they become invaluable over time to check for change.
I am a 3A so I get quarterly PET scans and dermatologist visits. He took off 5 more moles today after last quarters visit required a secondary surgery to go deep for a suspicious mole on my arm.
Do it today.
Michel
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- December 12, 2015 at 2:29 am
Kare – the easiest and cheapest advise I can give is to take your own picture in the privacy of your home (mom, dad, spouse, kid…anybody can do them) Do all angles both close and distant. Save them to a flash drive….costs virtually nothing and they become invaluable over time to check for change.
I am a 3A so I get quarterly PET scans and dermatologist visits. He took off 5 more moles today after last quarters visit required a secondary surgery to go deep for a suspicious mole on my arm.
Do it today.
Michel
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- December 12, 2015 at 2:29 am
Kare – the easiest and cheapest advise I can give is to take your own picture in the privacy of your home (mom, dad, spouse, kid…anybody can do them) Do all angles both close and distant. Save them to a flash drive….costs virtually nothing and they become invaluable over time to check for change.
I am a 3A so I get quarterly PET scans and dermatologist visits. He took off 5 more moles today after last quarters visit required a secondary surgery to go deep for a suspicious mole on my arm.
Do it today.
Michel
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Tagged: cutaneous melanoma
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