Another possible avenue in my diagnosis process for potential triple-negative ET...
Went to a new dermatologist who noticed I have more moles than the average person. She told me most people have 10-40 over their whole body, and having over 50 puts you at higher risk of skin cancer.
In my case, I have about 100 moles. I also have a tendency to grow lipomas in my thighs since my early 20s.
I’ve read that having a high mole count could be connected with having a mutation in a tumor suppressor gene, several of which are the “non-driver” mutations associated with MPNs.
Just wanted to see if anyone else, particularly those with diagnosed non-driver mutations, have experienced this.
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cmc_ufl
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Hi cmc_ufl, hope you are doing well, I dont think I have high mole count but my MPN specialist in my last appointment recommended to see dermatologist once a year for skin cancer screening, she said MPN patients are at higher risk for skin cancer, I thought it is medications side effect but she said the medication would increase the risk which is already there with MPN.
Thanks for the reply. Yes, being inflammatory disorders, my understanding is that MPNs increase the risk of a variety of cancers, including skin cancers. Hope you are doing well.
I to have lots of moles no idea how many though . Also no idea what non driver mutations are I will need to look this one up . I also get a lot of fatty lumps !
Ask your specialist about non-driver mutations. There are some MPN non-driver mutations associated with disease progression that are known to cause high mole count (CDKN2A, BRAF, etc.).
Hi! I am PV Jak2+, diagnosed two years ago and just like you, I have a lot of moles (have never had them counted) AND lipomas in my thighs! I believe also my sister and my niece have lipomas , and my sister has lots of moles (but they do not have an MPN), plus I remember my great-aunt having lots of moles. So it seems these characteristics may be passed on through our genes. I had the lipomas scanned a few years ago and was told they are benign.
About a year ago I started developing a skin rash. It started small, just a few bumps on the shoulder but kept appearing on different parts of my body and grew. Has become a real issue, covering most of my torso. After a biopsy , the diagnosis was interstitial granulomatous dermatitis, probably due to the PV but very rare as a PV symptom. I am now in the process of understanding how to manage it (cortisone works but has rather heavy side effects) , and started taking HU a month ago, to see if it works. According to the MPN team at Guy's, I am their first patient with this.
I am also being monitored by the dermatology department.
So it seems that in my case the skin is the sensitive organ to PV impact.
For the rest, I am pretty much symptomless.
I hope that for you it all stays just with the moles and the lipomas but I think it is useful to know that we should protect our skin as much as we can.
Ask your specialist about non-driver mutations. There are some MPN non-driver mutations associated with disease progression that are known to cause high mole count (CDKN2A, BRAF, etc.).
Thank you! I certainly will. She did mention it herself at our last appointment as we were discussing the issue of JAK2+ allele burden, but we did not talk about any in particular. I will certainly ask.
Hi. What an interesting thread. I have PV Jak2 mutation. I have lipomas, 2 in my thighs. I also have GA (granuloma annulare) which my hematologist says is a side effect from the Peg interferon. I was on clobetasol for a year off and on which did little. Then my dermo gave me a shot of cortisone (2 actually) and it completely disappeared. Last week I developed a wicked case of vascular hives which they are saying is also from the interferon. So the skin thing is really a thing!
Greetings, I have ET treated with an aspirin and hydroxyurea since 2019. In the last 7 months I have bloomed with skin cancers. I have had four excisions, some scrapings, some freezing for treatments. I found all of these myself. I usually go once a year to get an overall check, but I'll be going every 6 months now. Good luck, get a check more often perhaps.
Interesting. I have many more than 40 moles and also have a limpona. I have had actinic keratoses treatment on 3 occasions. Being on hydroxy. does go well with this mix!
I have way more than 50 moles, I reckon, but never had them counted...
I’ll raise this at my haematology appointment tomorrow. Among other things. They’re usually fairly dismissive of anything I raise, other than the time I had a possible dvt! So am likely to also request a referral to a specialist.
Though this is yet another thing to worry about, I am thankful for being made aware! Have never really used sunscreen, but have been using since ET diagnosis and starting on Hydroxycarbamide
Ask your specialist about non-driver mutations. There are some MPN non-driver mutations associated with disease progression that are known to cause high mole count (CDKN2A, BRAF, etc.).
Thank you! Right arm pretty similar, 53...Am going to let gp and haematology know, and more importantly, I know now too!! Got a couple of 'rough' patches on my fore arm, been thinking it is dry skin, but they are persisting despite using good cream. Maybe get them checked out.
I had to look that up, cherry angiomas...I have 2 red marks on my face, round, and have always thought they are burst blood vessels? Now I am wondering if they are these, but they are not raised. I had a mark on my lower lip checked out about 5 years ago that appeared, they told me it was fine, a mole, and to always use high factor lip protection, which I have done since. I think, from the links you have kindly provided, that I need to ensure this is noted and an eye kept on it. Thank you so much for raising it!
Hi there. I also have a lipoma in my thigh and over 100 moles. I had a biopsy on one under my eye on Sunday. Results in a few weeks. I haven’t told my consultant, will wait for the outcome. Mel x
Ask your specialist about non-driver mutations. There are some MPN non-driver mutations associated with disease progression that are known to cause high mole count and skin cancers (CDKN2A, BRAF, etc.).
My husband has PV, diagnosed January 2011. He is 56. He also has lipomas all over his body which started in his early 20s, as well as a very high mole count. He also has tested positive for the Jak 2 gene (mutation). None of his doctors have ever linked the lipomas, or high moles count to his PV…. That’s very interesting that you have mentioned this…. Thank you…. I will be asking at his next appointment about a connection.
Ask about non-driver mutations. There are some MPN non-driver mutations associated with disease progression that are known to cause high mole count (CDKN2A, BRAF, etc.).
I have a high mole count and have noticed more moles in the years leading up to my diagnosis. I thought maybe it was due to my age and living in sunny California, but now I am wondering if I need to be more cautious with sun protection. None of my relatives have ever had skin cancer despite presenting with high mole counts, but some of them have had other types of cancer.
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