› Forums › Cutaneous Melanoma Community › Questions about mole with “severe atypical cells” when nothing see in skin exam
- This topic has 12 replies, 3 voices, and was last updated 9 years, 7 months ago by
Girlwithspots.
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- November 11, 2015 at 12:50 am
Hello. I am here to the online community. Looking for some guidance from others who have been or are going through this.
First, some melanoma history:
1. My father died of metasized melanoma at age 70. He had a mole on his back and it changed and he didn't get it checked in time.
2. This January, at age 58, I had a superfical spreading melanoma removed from my right shoulder. It was a nonpigmented lesion that I think had been there three, maybe four at the most, months. I actually thought I'd scraped my shoulder; it sort of faded and returned. I missed my regular yearly skin checkup due to other family members' health issues so I kick myself. But I was lucky. It had no depth, no ulceration. Was melanoma in situ. I had the followup surgery after the biospy and they got it all. Note: When I went to the dermatologist, the PA said that he just thought it was a basel cell and only twice had he seen a melanoma in 10 years. Go figure right.
So – to followup I get my skin checked every three months. And in between, because I'm now perhaps overly cautious, I go in if I see anything else. (A note here – it's often two weeks to get in and it's always two weeks to get my biospy results – Does that seem like a long time? )
3. Since January, I've had several moles removed and they came back fine.
4. Since January, I've had three definite and one possible actinic keratosis frozen off my left eyebrow. Precancerous, the PA said. No issues.
And now for the issue and the real reason for my posting.
5. On Oct. 27, I had my regular three month skin check. All was well. This was when my PA – who I think is pro active and always listens to me – froze two of the Actinic Keratosises. While I was there, I asked her to remove two moles on my stomach. She did. One was small and it came back fine. The other one came back with "severe atypical cells." I go in for more surgery Nov. 24, although I'm hoping to get that moved up but don't think the schedule will allow.
Here's the issue:" THERE WERE NO CLINICAL SIGNS on this mole – and yet it comes back with "SEVERE atypical cells." In fact, four different medical personnel in this practice have looked at this mole, sometimes as regular checkups and other times at my questioning, and NEVER saw any reason to remove it.
SO here are my questions and if anyone can answer any or all of them I would be most grateful.
1. Going forward, what do I do about moles on my skin? How can I be sure that there's not another one of these "nothing looks bad but it's bad inside" moles? Do I insist on EVERY mole that's bigger than a certain side or isn't completely round or I just don't like be taken off? I'm ready to do that! That frankly is my major worry – if you are supposed to get checked and watch for evolution or changes but there aren't any and it's still severe atypical cells, is there any way to be MORE pro active?
2. And now I have questions about what I've been told by the nurse and the PA regarding this severe atypical celled mole. First the nurse said it "is not cancer" and then said "it's pre cancerous." Then she said that it was sort of like the actinic keatosis. Then she said that they're take a bigger chunk of tissue and send it off "to see if there are any more cells" and then she said "to test to see if it's melanoma." And I said Wait, you just said it's not cancer! And she sort of backpeddled and said, "well that would be rare.
3. Now to the information from the PA (my regular PA isn't in the office this week so I talked to another one) He said that "you have nothing to worry about." And that "you never know if these things will be turn to cancer or not." And he dismissed my question about why no one thought on exam to remove this mole and it's got severe atypical cells. And then he said that really concerned me "You know there's a fine line between severe atypcal moles and melanoma in situ. Some pathologists would say it's one, some the other. It's like a political debate." And then on my questioning, said oh, no it will be fine.
4. The PA also said there were "just a few severe atypical cells at the edge" and not deep into the sample.
So there are my questions/concerns. I would appreciate any direction.
Also, the entire year has stressed me out. I spend lots of long nights looking at every spot on my skin, trying to catch the cancer before it gets me. It's totally destroyed my emotional balance and I feel like I've got nobody to talk to. So again thanks for any help/advice/suggestions
Girlwithspots
- Replies
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- November 11, 2015 at 2:13 am
Girlwithspots – I am a Stage 3A patient and just had a mole diaganosed with the exact same wording after the initial shave biospy. And today he went back and took a much broader and deeper chunk of my forearm (but nothing like a Wide Area Excision).
I now have quarterly visits with the dermatologist who goes over me head-to-toe (literally). And his view with that same diagnosis… it is not related to the original melanoma and caught in plenty of time…just going to leave a small scar….so no big deal.
One thing that I have learned is to take pictures for your own files every quarter (in fact did it last night). My wife took 75+ pictures with a good camera and now we have the ability to put them on the monitor and really compare from year to year. Assuming you have a reasonably good camera (and most cell phones probably would work as well)….it will cost you nothing and the piece of mind of knowing that it looks the same as last year is very helpful.
Two tips…make sure you take tons of picture from every possible angle…and second…if you sync with the cloud…just be careful of who else has access (put it on a thumb drive is probably the best solution). Personally I don't care who has a full screen picture of my rear-end and the two moles that are there…I just want to be alive next year. (but good data security practices should always be considered)
Michel
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- November 11, 2015 at 2:13 am
Girlwithspots – I am a Stage 3A patient and just had a mole diaganosed with the exact same wording after the initial shave biospy. And today he went back and took a much broader and deeper chunk of my forearm (but nothing like a Wide Area Excision).
I now have quarterly visits with the dermatologist who goes over me head-to-toe (literally). And his view with that same diagnosis… it is not related to the original melanoma and caught in plenty of time…just going to leave a small scar….so no big deal.
One thing that I have learned is to take pictures for your own files every quarter (in fact did it last night). My wife took 75+ pictures with a good camera and now we have the ability to put them on the monitor and really compare from year to year. Assuming you have a reasonably good camera (and most cell phones probably would work as well)….it will cost you nothing and the piece of mind of knowing that it looks the same as last year is very helpful.
Two tips…make sure you take tons of picture from every possible angle…and second…if you sync with the cloud…just be careful of who else has access (put it on a thumb drive is probably the best solution). Personally I don't care who has a full screen picture of my rear-end and the two moles that are there…I just want to be alive next year. (but good data security practices should always be considered)
Michel
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- November 11, 2015 at 2:13 am
Girlwithspots – I am a Stage 3A patient and just had a mole diaganosed with the exact same wording after the initial shave biospy. And today he went back and took a much broader and deeper chunk of my forearm (but nothing like a Wide Area Excision).
I now have quarterly visits with the dermatologist who goes over me head-to-toe (literally). And his view with that same diagnosis… it is not related to the original melanoma and caught in plenty of time…just going to leave a small scar….so no big deal.
One thing that I have learned is to take pictures for your own files every quarter (in fact did it last night). My wife took 75+ pictures with a good camera and now we have the ability to put them on the monitor and really compare from year to year. Assuming you have a reasonably good camera (and most cell phones probably would work as well)….it will cost you nothing and the piece of mind of knowing that it looks the same as last year is very helpful.
Two tips…make sure you take tons of picture from every possible angle…and second…if you sync with the cloud…just be careful of who else has access (put it on a thumb drive is probably the best solution). Personally I don't care who has a full screen picture of my rear-end and the two moles that are there…I just want to be alive next year. (but good data security practices should always be considered)
Michel
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- November 11, 2015 at 4:32 am
Dear Michel,
Thank you so much for your reply. It is a relief just to read that someone else has gone through the same thing and that is going to be ok. (I hope for both of us.)
I have taken some photos with my ipad camera actually – and plan to take some more better ones. It is helpful for me to look at them. I have so many spots and places that sometimes I think, oh what's that and it's just something already there.
My problem with this last mole was that it hadn't changed, looked the same, no signals to the clinician and yet, bam! What your mole suspicious in any way?
I do think that now I basically have a green light to have any thing I think is funky even if the doctor says it's fine. Worst words I've ever heard "let's just wait it." Wait it do what?
Thanks again for your answer and good advice re the photos.
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- November 11, 2015 at 4:32 am
Dear Michel,
Thank you so much for your reply. It is a relief just to read that someone else has gone through the same thing and that is going to be ok. (I hope for both of us.)
I have taken some photos with my ipad camera actually – and plan to take some more better ones. It is helpful for me to look at them. I have so many spots and places that sometimes I think, oh what's that and it's just something already there.
My problem with this last mole was that it hadn't changed, looked the same, no signals to the clinician and yet, bam! What your mole suspicious in any way?
I do think that now I basically have a green light to have any thing I think is funky even if the doctor says it's fine. Worst words I've ever heard "let's just wait it." Wait it do what?
Thanks again for your answer and good advice re the photos.
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- November 11, 2015 at 4:32 am
Dear Michel,
Thank you so much for your reply. It is a relief just to read that someone else has gone through the same thing and that is going to be ok. (I hope for both of us.)
I have taken some photos with my ipad camera actually – and plan to take some more better ones. It is helpful for me to look at them. I have so many spots and places that sometimes I think, oh what's that and it's just something already there.
My problem with this last mole was that it hadn't changed, looked the same, no signals to the clinician and yet, bam! What your mole suspicious in any way?
I do think that now I basically have a green light to have any thing I think is funky even if the doctor says it's fine. Worst words I've ever heard "let's just wait it." Wait it do what?
Thanks again for your answer and good advice re the photos.
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- November 11, 2015 at 5:15 am
Just because it was severely atypical doesn't mean it would EVER have changed to melanoma. Severely atypical moles are NOT precancerous. Precancerous lesions imply that if left alone, they will eventually turn into cancer. That is typically the case with Aktinic Keratoses — they eventually turn into Squamous Cell Carcinoma. The vast majority if atypical moles will NEVER turn into melanoma. So that mole could have been severely atypical for many, many years and stayed that way for the rest of your life. Watch for CHANGE. Do home checks once a month. And even then, changing moles don't have to be melanoma. They are, however, higher risk.
Get GOOD pictures — close up and further away so you can see what's new. (50% of melanoma arise on new moles which is why wholesale mole removal is not really that beneficial). Pictures are the best way to monitor people with lots of moles!
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- November 11, 2015 at 5:15 am
Just because it was severely atypical doesn't mean it would EVER have changed to melanoma. Severely atypical moles are NOT precancerous. Precancerous lesions imply that if left alone, they will eventually turn into cancer. That is typically the case with Aktinic Keratoses — they eventually turn into Squamous Cell Carcinoma. The vast majority if atypical moles will NEVER turn into melanoma. So that mole could have been severely atypical for many, many years and stayed that way for the rest of your life. Watch for CHANGE. Do home checks once a month. And even then, changing moles don't have to be melanoma. They are, however, higher risk.
Get GOOD pictures — close up and further away so you can see what's new. (50% of melanoma arise on new moles which is why wholesale mole removal is not really that beneficial). Pictures are the best way to monitor people with lots of moles!
-
- November 11, 2015 at 5:15 am
Just because it was severely atypical doesn't mean it would EVER have changed to melanoma. Severely atypical moles are NOT precancerous. Precancerous lesions imply that if left alone, they will eventually turn into cancer. That is typically the case with Aktinic Keratoses — they eventually turn into Squamous Cell Carcinoma. The vast majority if atypical moles will NEVER turn into melanoma. So that mole could have been severely atypical for many, many years and stayed that way for the rest of your life. Watch for CHANGE. Do home checks once a month. And even then, changing moles don't have to be melanoma. They are, however, higher risk.
Get GOOD pictures — close up and further away so you can see what's new. (50% of melanoma arise on new moles which is why wholesale mole removal is not really that beneficial). Pictures are the best way to monitor people with lots of moles!
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- November 11, 2015 at 6:57 am
Thank you for the sound advice and good information. When the pa said that it was a fine line to melanoma, it really worried me.
i do have some photos but I am going to get my husband to take more digital ones.
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- November 11, 2015 at 6:57 am
Thank you for the sound advice and good information. When the pa said that it was a fine line to melanoma, it really worried me.
i do have some photos but I am going to get my husband to take more digital ones.
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- November 11, 2015 at 6:57 am
Thank you for the sound advice and good information. When the pa said that it was a fine line to melanoma, it really worried me.
i do have some photos but I am going to get my husband to take more digital ones.
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Tagged: cutaneous melanoma
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