After a long wait, I had a dermatology appointment. The dermatologist examined all my skin and found a very small 'mole' on my back that she thought was probably 'nothing' but recommended a biopsy of it. I received had this about three weeks later.
I've now received the following letter from the dermatologist (who was lovely), saying that she had tried unsuccessfully to contact me by phone (I've been on holiday). She then writes " The biopsy results have actually shown features consistent with your diagnosis of CLL. As such, I've written to Dr. W (my haematologist) to let her know. I know you have a follow up with her on 3rd July, so you can discuss this with her at your next appointment."
Because I developed Covid 3 days after returning home from holiday, I had to cancel this appointment and have another in a week and a half. Although my haematologist is the head of haematology at our hospital, she is not a CLL expert. I'm curious what "showing features consistent with your diagnosis of CLL" might mean, and what ramifications this may have for me.
I'm not worried about it, or I am sure the dermatologist would have asked for treatment if it were necessary; rather I am curious. Having said that, I am aware that I am probably getting near to beginning treatment for my CLL and wonder if this might influence the decision...... It would be useful to hear some thoughts about this, if possible, before I see my haematologist. Eleanor
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To my understanding JEEA, there are several ways our Cll can directly or indirectly cause skins issues. The direct way is that our cll can infiltrate our skin and cause lesions or rashes. I suppose it’s possible your dermatologist is saying the biopsy showed cll cells in your mole.
A second and indirect way our cll can cause skin problems is we are at an extra risk of acquiring a skin cancer. I would suppose your dermatologist would have written you have a new cancer as opposed to a mole consistent with cll if your cancer was new.
We can also indirectly get skin problems from our cll from any number of cll medicines we can take.
While it appears your doctor is saying the biopsy showed cll cells and not other cancer cells, the letter is vague enough where you might want to have your dermatologist clarify the report for you. You might also ask your Cll doctor what the implications are of the biopsy results insofar as treatment. I don’t think skin problems directly caused by our cll our uncommon, but they can be a sign of some advancing cll.
Finally, I would observe that some people, including me, can get confused with exactly how dangerous an “increased risk” of skin and other cancers is to us. Suppose just as am example that the world average for melanoma is 2% and we have “double” that risk. As awful as “double the risk” sounds, in that scenario we would still only have a 4% risk of getting melanoma and a 96% chance we don’t. What all that means to me is that we should all, within our resources, have regular screenings with a dermatologist. I see one annually and go again this August.
Good luck JEEA. I would consider speaking with both your cll doctor and your dermatologist to give you a better explanation of your biopsy results and make sure they are both on the same page as to what implications the biopsy result have, if any, on your treatment plans.
Thank you so much for responding so quickly, Sparkplug. Cajunjeff--your answer helps me better to know what I might say to the haematologist. If my haematologist cannot clarify the matter , I will try to contact the dermatologist. That can be difficult with our NHS, although her secretary is probably the way to her. Yes, I wondered if CLL cells could get into a mole. Interestingly enough, in my variant of CLL, I don't have large nodes anywhere. Eleanor
Hello JEEA. I think getting a clarification is a good idea. While I have read about Cll causing skin problems, I do not recall anything specific to moles. I think it’s fairly common knowledge that changes in moles can be a sign of skin cancer. I just dont know, one way or the other, if cll cells can infiltrate moles as well. It certainly seems plausible that they can and thats what the dermatologist report seems to say, but definitely worth clarifying imo.
Thank you Sofia. Goodness, some sobering reading in my scan of the Leukemia Cutis paper.
Of course, not being 'medical', I'm not sure I have understood it properly. However, the following leapt out at me: "Leukemia cutis characteristically demonstrates the infiltration of the skin by neoplastic leukocytes." "Leukemia cutis is regarded as a systemic manifestation of underlying leukemia and generally carries an unfavorable prognosis. "It is relatively rare and typically signifies an advanced disease stage."
I am only mildly disconcerted......so far. It is such a tiny little mole. But it does make me think yet again that I am nearing treatment. It now sounds important that I do contact my dermatologist before I see my (non CLL specialist) Haematologist. Eleanor
I think you are reading more into the "leukemia cutis CE" section, and pulling sentences out of context. The "unfavorable prognosis" isn't really relevant here IMO. If the skin eruptions were sudden, and the basis behind finding a leukemia CUTIS diagnosis, that is what tends to be behind this unfavorable prognosis. Because leukemia cutis isn't confined to CLL lesions. An aggressive, infiltrative cancer that initially presents as entire body eruption is a different thing. You have already been diagnosed with CLL. It is prudent to check any lesion/tumor to verify it's your CLL, or something else. You have lesions consistent with CLL, so they aren't secondary malignancies. It may indicate you are closer to needing treatment, depending on other cell lines.
I personally would be considering a BMB to see if marrow was heavily infiltrated, if you are apprehensive about treatment & other cell lines aren't impacted. If you've only got a few skin lesions without heavy marrow infiltration, perhaps you don't need treatment sooner. If this is a manifestation of increasing CLL infiltration, on top of marrow cell lines being affected, then you likely are correct your treatment time is nearer rather than later.
I agree, I've had them & there is a small infection or other complication risk, even when they are painless. I'm mentioning it more because it sounds like your non CLL doc may perhaps be looking only at lymphocyte counts in deciding you are "getting near treatment". If other marrow cell lines are stable, barring any of the other iwCLL recommendations for treatment or other diseases impacting treatment, you may not need it. If push came to shove, a BMB demonstrating low levels of infiltration, even though the lymphocyte count may be high/increasing, may show you don't really need treatment just yet, even though you have developed a few CLL skin lesions.
My hubby had molds and evidence of skin cancer (he's in treatment for CLL - he is taking calquence and venetoclax) - he gets checked every 6 months- but he golfs alot and is in the sun too (he wears sunscreen etc). So it's good to get a CLL expert advice for your next step. You will be in my prayers too
I recently had an endometrial biopsy and warned my gynecologist to make sure the pathology lab knew I had CLL. The path report came back with nearly the exact same verbiage about it being consistent with the CLL diagnosis. Apparently they ran a CBC on the sample and it showed a high ALC# count. I downloaded the full path report from my online health chart (called "MyChart" here in the US) and saw the lab numbers. So long story short: nuthin to see here folks.
Yrs ago, my CLL specialist explained that, since CLL is a blood cancer, it is everywhere the blood is. Makes sense, when you think about it. (Fun fact, there's no blood in the corneas)
we have a significant bigger chance of skin cancer with CLL. I’ve had to pre cancerous areas on my face that needed treatment. Watch your skin and apply sun screen.
I too had pre cancerous areas on my face which were treated with red light therapy and a squamous cell on my rt ear.
So don’t forget to apply sunscreen to your ears!! Easily forgotten
Wear a broad brimmed hat too.
I also had a mysterious non itchy rash all over but mostly on legs and feet. I was of course referred to a dermatologist who had trouble diagnosing the cause. Horrible biopsies were taken from my feet worse because I have peripheral neuropathy in both feet!!
During this time my CLL was becoming more aggressive. When I eventually saw my Heamatologist and told him what I’d been through with the rash ie no diagnosis! He said it probably a reaction to you CLL becoming aggressive.
Once starting treatment with Zanubrutinib the rash disappeared!! BUT I can still see it slightly under the skin.
So skin lesions and rashes can be attributed to CLL
Hi. I'm also in the UK. I have had CLL for 18 years and have had a few problems with skin lumps and rashes thought not moles. I've had several biopsies over the years. I go to a CLL Specialist who explained that it's difficult to differentiate between CLL cells in the skin and something like Primary Cutaneous Marginal Zone Lymphoma (PCMZL). My biopsies were sent to a specialist lab elsewhere. Initially it was thought to be CLL presenting in my skin which was not thought a problem in my case as it was considered part of my overall CLL as CLL cells get carried all over our bodies. A later biopsy determined it to be PCMZL. This was successfully treated about 6 years ago by radiotherapy and either subsequent CLL treatment has kept it under control or it has just disappeared. Because of the way it presented it wasn't thought to be a big future risk for me which was a big relief. Over the years I've been told that if they biopsied any part of my body then they would likely find CLL cells. My biggest take away from all this is that, for me, it's really important to be under the care of someone who specialises in CLL and knows all its quirks. Other haematologists, no matter how good, will not be aware of all the curve balls. Many years ago I asked my GP to help me transfer from the local haemotologist to a CLL Expert Consultant in a different hospital with a large specialised haematology department. It was the best decision I ever made 😊. It might be worth considering if you want more specialised care or reassurance now or in the future. I'm sure your current consultant would understand and most GP's are helpful with this.
I had a painful swelling on my knee, my dermatologist was unsure what it was (as was my GP) so she had a punch biopsy done on it; it turned out to be a cyst and the sample recovered showed CLL cells (which would not be surprising). With the cyst drained and the knee recovered, the news from histology was simply a confirmation of what was already well known.
I have CLL and was on watch and wait for several years. I developed a small flaky patch of skin on my outer ear in mid January. At first I thought nothing of it. Then it began to spread, turn red, pus and ooze and eventually turn black and necrotic. The pain was horrendous. It began a 4month journey of trying to figure out what the H was going on - nobody ever mentioned or suspected my CLL was the cause. I cycled through my PCP, a few visits to two different ENT's, and finally a dermatologist who did a second (deeper) biopsy and worked with a really good pathologist and together they figured it out (the first biopsy done by another ENT didnt show anything). What they eventually figured out was it was a skin manifestation of CLL. The various doctors involved had also tried several different antibiotics, steroids (both topical and oral) during these 4 months all to no avail.
By now it covered the upper half of my ear and was working its way into my ear canal. This was the tipping point that caused me to begin active treatment. I chose O + V and started in the beginnig of June. I also began several rounds of radiation done on my ear. My ear healed over the next couple of months, although I lost a bit of the upper rim of it (only noticable if you compare the two).
I wish it had been figured out sooner - so I tell others if they have skin issues and they have CLL to aggressively sort out if its CLL related (its rare, but not unheard of).
In my case the pain was so bad they had to give me IV dilaudid to debraid it, which was done 3x a week for several weeks when it was at it worst. And the pain was 24x7 for weeks, I could not sleep on my right side and it felt like a constant bee sting, only 10x worse.
Thats my story, and I know everyone is different. But I guess its sorta rare because the ENT I went to at Dartmouth ended up having a case study written about it and its in process of being published - hopefully nobody else goes through what I did!!!
Hi Eleanor sorry to hear about your latest condition. I have had six skin cancer removals but there has never been a mention of CLL infiltration which doesn’t mean it isn’t that of course.
As we’re at the same hospital perhaps our two consultants may take notice and learn something from each other. Good luck finding some answers. Please let us know where it leaves you following your appointment.
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