› Forums › General Melanoma Community › UNchanging mole– severely atypical– advice?
- This topic has 10 replies, 4 voices, and was last updated 13 years ago by
MichaelFL.
- Post
-
- April 8, 2011 at 3:43 pm
Hi everyone,
I posted recently about a very light innocent freckle on my toe that came back moderately atypical.
It was a few years "new".. but so innocent. In the meantime, my sister just had a spot removed from her face. It was UNchanged for at least 10+ years, on her face for 20. Her new derm looked at it with a dermatoscope and it had an unusual pattern so she recommended removal. It was severely atypical — more or less mm in-situ.
Hi everyone,
I posted recently about a very light innocent freckle on my toe that came back moderately atypical.
It was a few years "new".. but so innocent. In the meantime, my sister just had a spot removed from her face. It was UNchanged for at least 10+ years, on her face for 20. Her new derm looked at it with a dermatoscope and it had an unusual pattern so she recommended removal. It was severely atypical — more or less mm in-situ.
Both of us have hundreds of moles, had had mm in in-situ, have body photography done, and I've probably had 50+ moles removed.
I am now on edge because hers didn't change at all- so how can we know what needs to come off and what is brewing on our skin? I have so many now i want off w/ our history, my moley skin, with my toe "surprise" one and now her face.
My derm i love, but does not use a dermatoscope that I know of (or not very often)
I know how lucky we are to catch it early, but just wondering how to proceed if now change or being new might not even be a sign!!
Thanks and best wishes to all : )
- Replies
-
-
- April 8, 2011 at 4:02 pm
If your sister's mole wasn't changing, then it likely wasn't turning into melanoma either. Severely atypical is NOT a melanoma diagnosis although diagnosis can be blurred and treatment is the same. The vast majority of atypical moles will NEVER change into melanoma. The whole point of doing photographs and watching your moles for change is… changing moles have a higher likelihood of becoming melanoma. Moles that aren't changing aren't growing or mutating.
As for the dermatoscope, it's just another tool. It's a lighted magnifying glass. It can't diagnose. Pictures that show change are more important than a magnifying glass.
My local institution does mole mapping where they take pictures of moles at each visit, then compare with previous visits. At a symposium I attended, this is the results of their clinical study to date using mole mapping.
In the mole mapping clinic, the doctors have mapped 5945 moles. Over a 4 year period, 96 moles showed change and were biopsied. 98% of all atypical moles were stable. The mole mapping is done on high risk patients – either those with dysplastic nevus syndrome or multiple primaries. Notes: a changing mole is ok as long as it is changing symmetrically. Moles can be irritated or just grow. But if a mole changes asymmetrically, it should be biopsied. New moles are generally ok unless they are different from all the other moles
Best wishes,
Janner
-
- April 8, 2011 at 4:02 pm
If your sister's mole wasn't changing, then it likely wasn't turning into melanoma either. Severely atypical is NOT a melanoma diagnosis although diagnosis can be blurred and treatment is the same. The vast majority of atypical moles will NEVER change into melanoma. The whole point of doing photographs and watching your moles for change is… changing moles have a higher likelihood of becoming melanoma. Moles that aren't changing aren't growing or mutating.
As for the dermatoscope, it's just another tool. It's a lighted magnifying glass. It can't diagnose. Pictures that show change are more important than a magnifying glass.
My local institution does mole mapping where they take pictures of moles at each visit, then compare with previous visits. At a symposium I attended, this is the results of their clinical study to date using mole mapping.
In the mole mapping clinic, the doctors have mapped 5945 moles. Over a 4 year period, 96 moles showed change and were biopsied. 98% of all atypical moles were stable. The mole mapping is done on high risk patients – either those with dysplastic nevus syndrome or multiple primaries. Notes: a changing mole is ok as long as it is changing symmetrically. Moles can be irritated or just grow. But if a mole changes asymmetrically, it should be biopsied. New moles are generally ok unless they are different from all the other moles
Best wishes,
Janner
-
- April 8, 2011 at 5:05 pm
It is estimated that one out of every 10 Americans has at least one atypical mole. It is also estimated that about 50% of patients that have been diagnosed with melanoma also have at least one atypical mole (thats me!)
It has not been shown that removing all the moles decreases the lifetime risk for melanoma. Melanoma can arises de novo, i.e. not in a pre-existing benign mole.
Not everyone who has atypical moles gets melanoma either. Just because your sisters mole was severely atypical does not mean it will ever become melanoma. In fact, most moles — both ordinary and
atypical ones — never do become cancerous. You said your sisters mole did not change, and that is whay one is looking for when it comes to melanoma.Michael
-
- April 8, 2011 at 5:59 pm
I have to chime in here, and this is just my two cents worth and I am not discrediting Michael or Janner because they are both very knowledgeable on the subject – but for what it is worth. I had a atypical mole on my arm for 10 yrs. it NEVER changed, not one bit. I have a fair number of moles/freckles what ever you want to call them both atypical and ordinary. I went to my Dr and said hey I don't like this spot lets get rid of it. I got all of the same stats on atypical and ordinary moles and not changing and blah blah. How it was nothing. I was told how I would have a scar so on and so on.
Then it ulcerated. Now suddenly I have stage IIIC that rapidly became stage 4. From where I stand you know your body, somewhere in the back of your mind you know what is right and what isn't. If it makes YOU uncomfortable then have it removed! I don't care what argument they give you for not removing it. If they won't find someone who will. If it turns out to be nothing then at least you know and you feel better about it. I personally would rather have a hundred scars and 50 hours of surgery than Stage 4 melanoma.
Listen to your gut! After this happened to me I had a Dr. friend of mine tell me that and I quote ALWAYS listen to your gut because Drs. are not always right – that is why they call it practicing medicine. That's just my opinion.
-
- April 8, 2011 at 6:27 pm
Like Dawn, I've been paying attention to what Janner & Michael have been writing. They're like E. F. Hutton (when they speak everybody listens…I may be dating myself), and I'm not going to argue with a thing they've said, as a matter of fact, I've learned a lot.
I had my mole, I KNOW 30 years before it started changing. Atypical, looked like two moles on top of each other, and a doctor even said that. It had been seen by more people than my Mama. But only my parents, and later my husband, didn't like the look of it and wanted me to have it removed.
I'm not quite sure of when it started turning black, but I was 48 and I turned 48 in Sept 2007. The first of March 2008, what looked like a bubble came up over night at the top tip. In two weeks the whole mole was noticeably raised.
And this is why I talk so much about keeping a clear head so you can act with clarity. It's because I didn't. I learned a lesson I'm so grateful to be alive to share. Stubbornnes and being a rebellious daughter kept that thing on my arm for 30plus years. Paralyzing fear kept it on after that bubble appeared because I knew what a change like that probably meant and I knew my family history and I knew I couldn't deal with that.
I hid that raised mole as best as I could until my husband definitely saw it. No dermatologist could see me until late September! (derm offices need to train receptionists to understand when someone calls saying a mole has drastically changed, that they need to be seen immediately and not put off for months).
It started bleeding that July, but later tests would reveal that by then cancer was in my lymph nodes. I couldn't turn back the clock and deal with that mole when I was 18.
Janner & Michael have taught me much and I know they're right about what they're saying and I understand that had I had that mole removed much earlier I still may have developed melanoma. Or I may not have. Got to move forward.
But, now, when in doubt, cut it out is my motto…or will be if I ever have to put that motto into practice. Nobody will be allowed to tell me otherwise. So, in my opinion, I go with Dawn while knowing Janner and Michael are right. Go with your gut, or your Mama's gut.
Whatever you do, you're the one who has to live with your decision. Just make sure it's a decision you can live with and that you can live.
Carol
-
- April 12, 2011 at 1:16 am
Absolutely! I am not a doctor, and as far as I know no one else here is either.
I try to post information on what I have learned either through others, online or personal experience. In no way does that mean it is the last or final word. (ask my wife about that sometime)
The bottom line is that everything here should be taken with a grain of salt, and in the end the original poster needs to do what they feel is right for them.
Michael
-
- April 12, 2011 at 1:16 am
Absolutely! I am not a doctor, and as far as I know no one else here is either.
I try to post information on what I have learned either through others, online or personal experience. In no way does that mean it is the last or final word. (ask my wife about that sometime)
The bottom line is that everything here should be taken with a grain of salt, and in the end the original poster needs to do what they feel is right for them.
Michael
-
- April 8, 2011 at 6:27 pm
Like Dawn, I've been paying attention to what Janner & Michael have been writing. They're like E. F. Hutton (when they speak everybody listens…I may be dating myself), and I'm not going to argue with a thing they've said, as a matter of fact, I've learned a lot.
I had my mole, I KNOW 30 years before it started changing. Atypical, looked like two moles on top of each other, and a doctor even said that. It had been seen by more people than my Mama. But only my parents, and later my husband, didn't like the look of it and wanted me to have it removed.
I'm not quite sure of when it started turning black, but I was 48 and I turned 48 in Sept 2007. The first of March 2008, what looked like a bubble came up over night at the top tip. In two weeks the whole mole was noticeably raised.
And this is why I talk so much about keeping a clear head so you can act with clarity. It's because I didn't. I learned a lesson I'm so grateful to be alive to share. Stubbornnes and being a rebellious daughter kept that thing on my arm for 30plus years. Paralyzing fear kept it on after that bubble appeared because I knew what a change like that probably meant and I knew my family history and I knew I couldn't deal with that.
I hid that raised mole as best as I could until my husband definitely saw it. No dermatologist could see me until late September! (derm offices need to train receptionists to understand when someone calls saying a mole has drastically changed, that they need to be seen immediately and not put off for months).
It started bleeding that July, but later tests would reveal that by then cancer was in my lymph nodes. I couldn't turn back the clock and deal with that mole when I was 18.
Janner & Michael have taught me much and I know they're right about what they're saying and I understand that had I had that mole removed much earlier I still may have developed melanoma. Or I may not have. Got to move forward.
But, now, when in doubt, cut it out is my motto…or will be if I ever have to put that motto into practice. Nobody will be allowed to tell me otherwise. So, in my opinion, I go with Dawn while knowing Janner and Michael are right. Go with your gut, or your Mama's gut.
Whatever you do, you're the one who has to live with your decision. Just make sure it's a decision you can live with and that you can live.
Carol
-
- April 8, 2011 at 5:59 pm
I have to chime in here, and this is just my two cents worth and I am not discrediting Michael or Janner because they are both very knowledgeable on the subject – but for what it is worth. I had a atypical mole on my arm for 10 yrs. it NEVER changed, not one bit. I have a fair number of moles/freckles what ever you want to call them both atypical and ordinary. I went to my Dr and said hey I don't like this spot lets get rid of it. I got all of the same stats on atypical and ordinary moles and not changing and blah blah. How it was nothing. I was told how I would have a scar so on and so on.
Then it ulcerated. Now suddenly I have stage IIIC that rapidly became stage 4. From where I stand you know your body, somewhere in the back of your mind you know what is right and what isn't. If it makes YOU uncomfortable then have it removed! I don't care what argument they give you for not removing it. If they won't find someone who will. If it turns out to be nothing then at least you know and you feel better about it. I personally would rather have a hundred scars and 50 hours of surgery than Stage 4 melanoma.
Listen to your gut! After this happened to me I had a Dr. friend of mine tell me that and I quote ALWAYS listen to your gut because Drs. are not always right – that is why they call it practicing medicine. That's just my opinion.
-
- April 8, 2011 at 5:05 pm
It is estimated that one out of every 10 Americans has at least one atypical mole. It is also estimated that about 50% of patients that have been diagnosed with melanoma also have at least one atypical mole (thats me!)
It has not been shown that removing all the moles decreases the lifetime risk for melanoma. Melanoma can arises de novo, i.e. not in a pre-existing benign mole.
Not everyone who has atypical moles gets melanoma either. Just because your sisters mole was severely atypical does not mean it will ever become melanoma. In fact, most moles — both ordinary and
atypical ones — never do become cancerous. You said your sisters mole did not change, and that is whay one is looking for when it comes to melanoma.Michael
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.