Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist on a timely basis.
During the first few visits, my dermatologist used cryotherapy (freezing) to zap suspicious spots. As the years passed, she found a number of spots which she cut out during the visit and sent specimens off for analysis. Most turned out to be non-cancerous (actinic karitosis) while a few were squamous cell or basil cell carcinomas. Both these are very common and easy to treat, especially if they are caught early. For most people these occur on the face, scalp and hands (uncovered skin)
During my last visit, my dermatologist removed three suspicious looking spots. Two turned out to be harmless while one was a complete surprise - sebaceous carcinoma - a very rare but aggressive cancer. This cancer only occurs once or twice per million per year but has been increasing in recent years. 75% are found on eye-lids with most of the rest on the face. However it can appear anywhere on your body. In my case, it was really a rare occurrence - found on my lower shin.
This cancer is sometimes known as the great impostor and to the less than experienced eye can pass off as benign and not investigated further. Luckily, my dermatologist is very experienced. If she doesn’t like a spot, she cuts out and asks questions later. Because, this cancer is outside her “pay grade”, she has referred me to a plastic surgeon for further diagnosis and action. Like most cancers, early diagnosis greatly improves the outcome.
I always say that when you live with cll, you get periodic Cracker Jack boxes (okay, I’m aging myself😀). You like some of the surprises and some not so much.
I will let the community know more stuff after I see the specialist’s specialist. If anyone else had experience with sebaceous carcinoma, I would appreciate hearing about your experience. So far, all my knowledge comes from Dr Google (😱). I now have to do it on the sly since my wife is not always keen on the paths Google takes me (😳)
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Vizilo
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Good warning Vizilo and I’m glad to hear your sebaceous carcinoma was detected early. I firmly believe all CLL’ers should have dermatological monitoring at least yearly but alas it’s not available on the NHS. I’ve had a malignant melanoma and still can’t get regular monitoring of any kind because dermatology services are so over stretched in the U.K ☹️ It’s a matter of careful home surveillance and asking for an appt on the 2 week cancer scheme if possible but not all GP’s will oblige.
Regular monitoring is almost impossible in Canada too unless you have an urgent issue. My wife tried to get into see my dermatologist but because she has no issues, she could not be taken
I’m referring to monitoring of CLL patients with increased susceptibility of skin cancers Vizilo. I can understand why routine monitoring of the non affected population wouldn’t be possible however (unless of course your wife has CLL.) Crazy to me that even CLL patients with a history of skin cancer don’t receive regular monitoring.
Quite agree Newdawn, it is crazy. With similar skin cancer record as yours I don't get referred to a dermatologist these days for suspect lesions. Even the GP wants photographic evidence before they'll see me in the flesh. Chances are next step is a scrip for Efudix, no follow up.
I think it might depend on the country you live in and insurance. I am in the US and have a history of melanoma , SCC and BBC. I was recently diagnosed with CLL. I see a dermatoglist who only sees skin cancer patients. Thankfully if I see anything that I think looks off,I can get in immediatley.
I am beginning to understand the shortage of medical staff/MD's in Canada as a result of salaries being capped. My son and family recently moved there (for work) from the US and are stunned at the medical situation.
Since skin cancer is the most frequent secondary cancer for CLL patients, patients need to press hard to get screening.
I agree. You must advocate for yourself and if you live in a smaller community, you may have to research the availability of dermatologists in bigger cities in your province.
Hi Newdawn, your response to Vizio’s post regarding dermatology scans has prompted me to describe my own experiences.
I have had 6 minor skin cancer procedures in the last 7 years, namely Basal cell, Bowens and Squamous cell, the last procedure was just last year.
Only last week I was at my follow up skin check which was all good with the next appointment arranged for next year.
Just prior to the lock down most of my hospital treatments were cancelled and in some cases I was discharged back to my GP.
This included my dermatology treatments. However at the time I was told my consultant said when you need to see us again (not if) then ask your GP to refer you.
During lockdown I had the feeling that something was developing, but it wasn’t until the end of lockdown that I approached my GP asking to be referred back to the Royal Marsden dermatology.
After considerable dialogue trying to convince my GP that I needed to be seen she passed my request to the patient referral group who then arranged for me to be seen by a different organisation.
I was not at all happy with the outcome. I was seen by a plastic surgeon who at first said she did not believe in regular skin examinations even though I explained my CLL and previous skin cancer dictates that I should.
After speaking to my GP I cancelled any follow up appointments with this hospital group and again asked my GP to refer me back to those who had been treating me for the previous 6 years.
Her response was I cannot refer you directly I can only request a referral via the patient referral group and suggested that I contact them directly and explain the position.
This I did only to be told we have no patient pathways available to refer you to the NHS, the lady I spoke to (not medical) even suggested that the Royal Marsden only dealt with serious cancers I then informed her that they had been treating for six years.
I was now in limbo and unable to get a referral. I then approached my Haematologist at the other hospital treating me and asked her to refer me back to the Marsden hospital.
Even she was reluctant but relented and made the referral. One week later I was seen at the Marsden in clinic in the morning and a procedure performed in the afternoon.
The consultant assured me that I would now remain on the books and not be discharged back to my GP.
I have had many discussions with various medics in the system, who have said, it is all down to funding and who pays, the GP or the hospital.
It is clear to me that clinical commission groups have different agendas and in this the post code lottery is alive and well and our NHS is stretched to the limits.
Aerobobcat, your post highlights very important issues in the NHS around the intrusive use of these referral scrutiny services which sees many GP referrals being turned down leaving patients frustrated and without care. It annoys the **** out of me! 😡 I’ve had it happen to me when a secondary care service have been too busy to accept my GP referral leaving my GP eventually ranting to them that my needs had exceeded primary care capabilities and I’d need to be seen. In my case it was cardiology.
I’m glad you stood your ground and have been kept on by the reliable dermatology service. The excellent dermatologist kept me on for a year against usual protocol because he recognised the difficulties in getting me back into his service but it’s just another example of a serious service deficiency in the NHS.
Newdawn, sadly our experiences are not unique to ourselves. I have every reason to be indebted to our NHS, without the care I received in my teens onwards into adulthood I doubt I would be here if I had been born elsewhere in the world.
But if something isn’t forthcoming in respecting our NHS and funding it properly things will only decline further, we need the political willingness to protect it.
Yalokin , your premise assumes a defect in the TP53 gene in all body cells or at least skin and B cells. If there was a general TP53 genetic defect, I would consider it rather unlikely that cancer hadn't shown up earlier in Vizlio's lifetime than the mid 60s with his CLL diagnosis.
Vizlio, the defects detected in FISH testing are done on the CLL cells and show the DNA damage responsible for the CLL arising. Given the rarity of your carcinoma, you might like to ask your specialists whether your TP53 deficiency is more widespread, in which case wider scanning for cancers would be appropriate. I would think that most unlikely however.
I took the trouble to look up where I read about the connection with TP53. This disease is relatively rare and so are the publications on this topic. There are several in Bulgarian. I did not find exactly what I had read, but I quote this:
"Sebaceous Carcinoma
Sebaceous carcinoma is rare outside the ocular area, although within the ocular adnexa, it comprises 1–5% of malignant tumors in the United States. In Asia, sebaceous carcinomas comprise a much larger percentage of malignant tumors with estimates ranging from 25 to 40%. These tumors can occur in meibomian glands, glands of Zeis, caruncles, eyelid skin, lacrimal glands, and conjunctiva. As in BCC and SC, the P53 gene also plays a pivotal role in the development of sebaceous carcinomas. An analysis of sebaceous carcinomas in the eyelid demonstrated mutations in the P53 gene in 67% of tumors. Shalin et al. demonstrated that these mutations occur in all sebaceous carcinomas found in the periocular area but in only 5% of sebaceous carcinomas outside the periocular area. It is not clear what the causes of the mutations of the gene for p53 are as the mutations are not the classic mutations seen in response to UV radiation. In addition, sebaceous carcinomas can occur on the conjunctiva, an area that is protected from UV radiation. It is possible that mutations in the P53 gene could be secondary to UV damage or mutated in a nonclassical manner.
Otherwise, I read elsewhere that when diagnosing Sebaceous carcinoma, good practice recommends screening for other oncologies because of the association with Muir-Torre syndrome.
In truth, there is a bit of variance in the potential causes cited even by reputable sites.
Irradiation with UV light is not to be underestimated either.
The post I just quoted is here:
The Eyelid
T. Utheim, ... D.A. Dartt, in Pathobiology of Human Disease, 2014
Thanks for your research. My point is whether the TP53 damage was inherited, in which case I would expect cancers to show up much earlier, or arose subsequently in different body cells.
great reminder! CLL can cause little fractions throughout the body - my hubby had 2 skin molds burnt off (he goes every 6 months now) and a small cyst in his kidneys they are watching. I'm so glad that this networks exists and we are able to share information and many times you have put my fears at rest. I hope that you are all warriors and you have my sincere appreciation.
Thank you for your kind words. My purpose for posting this is to make cllers aware that skin cancer is fairly common among us (especially over 65). Most are no big issue if caught early and even more serious spots can be handled by specialists if found when they are still small. So, the more of us that can see dermatologists on a timely basis, the better the outcome for our community
I’ve just had a complete body check at a skin clinic which is attached to my GP clinic. I went because I’d had this sore on my ear the grissly bit on the outer edge. Thinking they could just zap it of!! But no a biopsy was taken and as she thought turned ou to be a squamous cell ca. early stage
So now I can burn it off with Effudex over several weeks or have this red light treatment twice 1 week apart. But more costly.. probably go for the latter. It’s red-light activated photodynamic therapy. For non melanoma skin C. I presume it’s kosher? I’ve got a few sun spots on my face and will have these burnt off with cream applications. Not to happy about any of this.
I’m not an expert but I thought PDT was used for pre-cancerous sun damage (actinic karitosis) - at least in Canada. I usually have these kinds of spots frozen off with liquid nitrogen - not that painful and very quick.
For more serious growths such as basal and squamous cell carcinomas, the spots are cut out with a scalpel by my physician. But you dermatologist should know what’s best for you
Thank you for posting. This is an important reminder for all of us, especially with CLL. I go so often to the Doctors that I tell myself do I really need to see another Doctor? The answer is yes, yes I do. Hoping for the best possible outcome for you!
Thank you. I also ask whether another visit is necessary . Given limited medical resources in Canada (a huge portion of the population doesn’t even have a family physician) I never visits a physician without a reason and it’s always the physician who refers me to a specialist or asks me to return periodically.
It took me 4 tries before I found one who recognizes and acts fast on suspicious areas. Not all dermatologists are effective. My first told me I had a cyst, removed it and results said it was a mole. She and the next 2 told me the other spot was a cyst, not to worry. Not sure if they just relied on the first's notes or what. Dr #3 went into senior staff position, quit seeing patients and I was assigned Dr #4. Best thing that could have happened. Dermatologist #4 was more proactive like yours, doubted the cyst diagnosis, took a biopsy, and found Basal Cell Carcinoma, not a cyst. This was missed for 7 years!
Initially after my CLL diagnosis I had been advised by fellow CLL'ers to find a dermatologist who saw and treated lots of HIV patients since they would be most familiar with immune compromised patients. Easier said than done, but it would be my recommendation if possible for those who don't have a dermatologist yet.
Lexie, I agree it’s a matter of luck finding (and keeping) a good dermatologist. In this case reverse-ageism is usually the best policy. The older the dermatologist the greater the range of experience. My dermatologist is in her 60’s and she has seen everything. In addition, she is fairly aggressive and cautious at the same time. While she will generally freeze small sun damaged spots, anything suspicious she cuts out immediately but automatically sends material from each excision for biopsy.
Great idea to see Dermatologist. I at the suggestion of this website started seeing Dermatologist once a year right after my first CLL treatments finished. I have been going for 3 years now, so far, the Dermatologist has given me clean reports with freeze offs of lesions which formed on left arm following chemo treatment. Lesions for the most part have discontinued. Still very much worth the time, I live in USA so not a big problem to get scheduled. Blessings.
My visits to the dermatologist were also uneventful for the first 4-5 years after I was diagnosed with Cll, with a few suspicious spots frozen off. It seems that it’s only been the last few years, as my cll progressed, that she has found and cut out half a dozen small but as it turns out cancerous growths. It pays to be diligent.
I too have about every issue that you have stated. Most recent event was 4.5 cm invasive squamous cell remo ed from my forearm. This all happening during my treatment of calquence and gayzva. They have stopped doing the pdt therapy of my head and face which i truly believed it was the best way to prevent things from becoming a bigger problem.
The pdt therapy has stopped do to my location along the southern border and the intense heat...agreed where are all the dermatologists..
Only just this morning I have found another spot on my nose that looks like same thing remove 3 months ago..
Unfortunately, this type of skin cancer is becoming all too common among older folk irrespective of whether they have cll or not. If I had taken precautions 30-50 years ago by staying out of the midday sun, covering up, using sunscreen, etc., I may have had fewer issues. But we’re all too smart when we are young……
I’ve been on w&w for 9 years now but in that time I’ve had an increasing number of skin cancers removed. Basal cell, squamous and Bowen’s love my body. In the last month though My Aussie dermatologist found a Merkal Cell Carcinoma on my temple. It’s doubled in size since he found it. It’s another rare and very aggressive cancer and I’m at stage 3. I’ll begin 6 weeks ray treatment in 10 days (on my birthday) after the surgery heals from sentinel node biopsy. CLL patients are 40% more likely to get these very rare skin cancers. I’m fortunate that my haematologist has managed to refer me to PeterMac Cancer Clinic in Melbourne and they have been fantastic getting things moving. My message to all is simple. Persevere with nagging medical staff to get your skin checked regularly wherever you are in the world but especially in Australia where incidence is much higher.
I agree 100%. You have to advocate for yourself and follow up promptly to ensure timely attention to skin issues. Before this week, I had not even heard of rarer skin cancers such as Merkel and sebaceous. Both require prompt identification and follow-up. Thank you for sharing and best wishes.
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