I am now in my mid-sixties and was diagnosed with CLL four years; I remain on watch and wait. At around the same time I started getting multiple lesions on my face; some were cancerous and required skin grafts, some were not. At my last appointment with the plastic surgeon I asked why I keep getting lesions and he put it down to the CLL; is he right? Does anyone else have a similar experience?
I was also diagnosed with Parkinson's Disease last year. Any connection to CLL?
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golfer89
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Yes, as sad as it is, CLL does make us prone to secondary cancers. Skin cancer in particular is pretty common.
I myself have had six skin cancer procedures, namely Basal cell carcinoma, squamous and Bowens on my face and body.
I do have regular full body skin examinations at least once a year and generally speaking they find something that needs attention but on the whole I’m confident in the treatment I receive via the Royal Marsden hospital.
The important thing is to maintain regular examinations from dermatologist who is fully familiar with CLL.
Are the Marsden arranging the checks? I am treated for CLL there but struggle to get checks via my gp for suspicious growths that could be skin cancer.
It’s interesting that you say you “struggle to get checks via your GP”. I’m unable to get any referral’s from my GP practice for any of my NHS clinical needs, but that is another story.
As for the Royal Marsden, my dermatology care was stopped at the start of the covid lockdown. I was advised when you need to see us again, ask your GP to refer you.
However, I did develop another suspected skin cancer but my doctor was unable to refer me back to the Marsden, for reasons which have not been clarified.
I was able to get a referral back to the Marsden from my Haematology team treating me at another hospital, as a consequence the Marsden team have said that they will not discharge me again and I will stay on there books.
It’s all very complicated but I have been informed by a few people in the NHS who have all said the same thing and that is “it’s all down to funding”.
Hope this makes sense. What I have learnt over the years is you need to be very proactive in advocating for yourself, it’s not easy nowadays it can be a struggle to get the right care when you need it.
Can I ask what your dermatologist does at the examinations. Whenever I’ve seen one they’ve tried cryotherapy and, when that doesn’t work, they refer me to a plastic surgeon. Who, being a surgeon, operates. I seem to have cut out the middle man and seem to have gone straight to surgeon.
My dermatologist does the lot but, in the past, I’ve been referred to a plastic surgeon (different dermatologist though. In New Zealand they mostly do it all themselves. It would have to be a big job to go to a plastic surgeon. Some GPs here even cut out small lesions.
I don't know where you are but please advocate to get these things biopsied, instead of just cutting them off or cryotherapy. They can do cryotherapy or whatnot after getting a specimen to be looked at. With CLL, a squamous cell carcinoma can be much more aggressive than in people whose immunity isn't impaired. You need to know what these are and can't assume anything. Don't let a doc assume "oh it's benign" oh it's a basal cell" unless that's been verified at least initially.
There are dermatologists who are also oncologists. I'm in the US, and chose a medium sized dermatology practice that has a Moh's surgeon in the group. If I ever develop a problem lesion, time won't be wasted in referrals.
Wondering what are you all calling "these things." Actinic kerotoses? Basal cell? I just today saw my doc at regular appt and a sore place I had developed is, he informed me, squamous cell carcinoma! I'm assuming yall aren't talking about that as getting 3 or 50 every year.
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Mostly basal cell but I’ve had 3 keratoacanthomas on my legs since December. I’m going in on Monday to get something else excised. Not sure what it is yet.
I have not yet had cancerous skin lesions but lots of precancerous spots. I see my dermatologist three or four times a year and each time I get zapped, usually on my face and back, where I experienced sunburns as a child.
Since I started seeing her, I have been vigilant about putting cream on my back and face every morning and every night. I have special face cream that is also a sunscreen.
Since I started doing this, the number of zaps has decreased. I notice where I am zapped and take special care to moisturize those spots. For example, I used to avoid putting sunscreen on my forehead because when I rode my bike, the sweat would cause the sunscreen to get into my eyes. But now the sun screen/moisturizer she recommended does not hurt my eyes.
I also have CLL and had been getting a lot of actinic kerotosis, then got this weird bump that doc thought a CLL manifestation. Gave course of steroids, didn't help. Wanted to do biopsy, but as there's no cure for CLL I declined -- and started rubbing luteolin liquid on the spot and it disappeared over a course of a few weeks (had had it for months). I also haven't had any more AK -- don't know if related or not to the luteolin but did see a science article on use of luteolin on skin. Most days take a capsule, cut it open and rub contents of luteolin over my face. Having said that, I'm on this site now because yesterday I was told a reasonably new place on my dominant hand (2 months) was squamous cell carc. Did what they said was biopsy, but there's a bit crater there now. Wish I had had more time to talk about this. Anyway, give luteolin (can by it as supplement on Amazon) a try.
interesting. I went through a real celery craze in past 6 mos., for a few months just craving celery, having it daily. I had never been such a fan before. Craving has slowed down now. Don't know what that means but I remember when I read about celery and luteolin I thought aha.
My husband is also W&W with squamous cell on his shin and face. However, we have several friends/acquaintances also dealing with skin cancers and they don't have CLL. Seems to be everywhere lately.
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