Given that with CLL, we have a much higher risk of skin cancers, CLL specialist Dr Wierda recommends 'at least an annual visit with a dermatologist for skin evaluation and screening for scan cancers' in this Patient Power interview: patientpower.info/video/are...
For some guidance on what to look for, the Skin Cancer Foundation and American Academy of Dermatology have provided some examples on the Cancer Network website: cancernetwork.com/articles/...
I absolutely agree with Dr. Wierda on this. CLL patients should have an annual dermatology screening built into their condition oversight. But it doesn't routinely happen and in the UK, the dermatological services seem too overstretched to facilitate this. I know this from talking to other CLL'ers and even as a person who has had a malignant melanoma, after the first year, my 'surveillance' was passed back to my GP. It's probably a postcode lottery in terms of practice and availability but I also know of a fellow CLL'er who was refused routine surveillance by a dermatologist because there wasn't an immediate, identifiable concern.
My advice would be to pester and nag if you are remotely concerned about a mole. And please don't imagine they need to look like those in the photos. Mine didn't. Even if they become just the tiny bit darker, larger or more jagged, insist on seeing a dermatologist not just a GP. My GP was convinced mine was totally innocent but referred me as a precautionary measure because of the CLL.
I'm sorry to rattle on about this yet again but I feel I had a narrow escape and become concerned that pictures of melanomas bore no relation to mine. They don't have to be evil looking, they just have to start 'misbehaving' to signal danger. If in doubt, photo it and blow up the picture. Then watch for any changes. My husband had been watching the mole on my back and as soon as it became a tiny bit darker I went to the GP.
Since my diagnosis in 2012, I have been seen by a dermatologist twice in a year. The very first question he asked me was if I have ever tanned in a tanning bed or outside? Since , I have been a sun worshiper all my life, he explained to me that my chances of getting any skin cancer is twice as higher than anyone else with the same condition. I would suggest to see a dermotologidt twice a year if you ever tanned.
I totally agree with the comments and advice given by all contributors. I have had two small ops in 12 months for what my GP calls "solar damage". Fortunately he is a skin specialist and is very aware of the added risks with CLL.
We should all use a total sunblock whenever we are out and even on a cloudy day. It,s good to enjoy the lovely weather but beware of those sunrays!!
That is interesting, Jeff. Would that be solar keratosis? I have one on my face, which was frozen off a few years ago, but the bits he missed are still there and very itchy! I was told it definitely wasn't cancer, but I have wondered.....
Does anyone know if there is any connection between the solar keratosis and melanoma?
I suspect the likelihood of a Solar/Actinic Keratosis developing into a melanoma is well down the list of possible skin cancers it could develop into, but obviously they are best removed to minimise the chance of any progression...
Thanks, Neil. Your replies are so helpful, always. Will get it checked- more to stop the questions at the back of my mind than the real, keep-you awake-at-night sort of worry.
It's certainly very important to be well aware of these risks. Just a short while after completing a course of BR chemo in 2012, I noticed a spot on my nose which didn't go away. The haematologist (who I saw for a checkup) correctly identified it as a squamous cell carcinoma, and told me to get a referral from my GP ASAP. Unfortunately, as a result first of a total cock-up by the GP surgery, and then injuries to half the plastic surgeons (!) at the hospital (Morriston/Swansea) the carcinoma was nearly as big as my nose by the time it was removed. The excellent surgeon who operated created a new nose from my forehead, which re-grew pretty well. After that, I have been seen at Morriston every three months - and told to call up and come immediately if I have a worry. (I have done that twice.) Most recently, and as it is a 150 mile round trip, I have agreed with the surgeon to move to 6 monthly checks - though the invitation to go in at once if something fishy shows up remains.
It really is an excellent service - just a pity that errors and sheer bad luck earlier allowed the carcinoma to get so big.
Thanks for that - though I think that I'm pretty lucky overall, as I have had a good remission from the CLL. The nose job was a bit of a downer, coming so soon after chemo, but that was 3 years ago now - ancient history! And the surgeon was so good, no-one can see the joins...
Yes good points Shazie, problems can be brewing from a burning incident as far back as adolescence. I've never been a sunworshipper in adulthood but recall incidents when I had bad sunburn in my early 20's. I believe immune dysregulation triggered the DNA changes in my skin to activate the melanoma on my back. I'd had the mole most of my life. I don't fit the standard profile for skin cancer apart from being fair skinned.
It's also important to say that melanomas don't always appear in sun exposed areas and CLL'ers are thought to have an 8 times greater chance of contracting skin cancers.
Newdawn is right, skin cancer can appear "where the sun don't shine". A major rule of thumb is if anything looks different have it checked. Pictures of skin cancers are just guidelines BUT not all skin cancers follow the rules and look like the pictures. I have battled skin cancer 3 times and presently waiting for another biopsy result. Not one time did "it look like " skin cancer. I have a fabulous dermatologist who listens to my instincts when I bring up something different. My malignant melanoma did not start out as a mole. It was not an ugly irregular spot. It was flat but I thought it was different. I went to my regular dermatologist who looked at it and said it does not look like anything to worry about. At my next 6 month check up I brought it up again and requested it to be biopsied. It was stage 1 melanoma.
If you have a seborrheric keratosis that changes, that two can transform into squamous cell carcinoma. Science is studying this transformation.
Timely advice given the onset of spring/summer here in the UK - so during a spell of warm and dry weather, I decided to do some gardening and took some precautions.
Clearly they were not enough as in the days that followed an itchy heat rash appeared together with a swollen face. I have been advised to either cover up completely or stay out of the sun (though I think a sunblock cream may suffice for short outings).
I believe that post chemo the skin is often far more sensitive to sunshine.
Interestingly, since FCR my vitamin D and calcium levels have dropped. This my be due to the effects of very low immunity deciding to attack healthy tissue within the parathyroid gland. A blood test to check hormone levels may or may not confirm this.
But it begs the often raised dilemma of the need for vitamin D from sunshine verses potential skin damage/skin cancer. (My thyroid gland is also underactive).
Thankyou again for all you do to keep us informed. Your efforts are very much appreciated.
I have had at least annual skin exams since discovering Basel cell skin cancer in 2007. This pre dated my CLL diagnosis.
Hello everyone. I too have had skin cancer several times, squamous cell and basal cell. Two of my GP's didn't think they were anything to worry about, and a mole biopsy result almost made the dermatologist fall off his chair! My advise, if you have anything on your skin that doesn't heal, looks off, or you intuitively know that something is amiss, insist on a biopsy if you can't get in to see a dermatologist. It is my experience in the medical world that we must follow up on all test results, and referrals to other doctors, as the people who organize offices can and will make errors of omission. Be your own advocate for your body.
I think the idea of photographing your moles and monitoring them is great. However, do a thorough skin check occasionally, even the bottom of your feet and scalp, so nothing is overlooked.
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