Yesterday, my husband had a telephone appointment with his consultant which was brought forward from August. The results of his ct scan show a lesion on his liver which is very worrying. I also spoke to her and the concern she has is as he had CLL in his ears it could be in his liver. He now waiting for an MRI. He has no symptoms at all. Bit of a blow as he would have been 5yrs in remission in June.
jenny uk
This is another reason in addition to the radiation exposure that regular CT scans are not recommended for CLL - because of the concern that common and usually benign lesions cause, along with the risks and cost associated with further investigation. Per: verywellhealth.com/liver-le...
Liver lesions are abnormal clumps of cells in your liver, and they are very common. They will be detected in as much as 30% of people over 40 who undergo imaging tests.
The majority of liver lesions are benign (not harmful) and don't require treatment. But in some cases, liver lesions are malignant (cancerous) and should be treated.
While the spleen can commonly become enlarged with CLL, the liver can also become involved. I get my liver checked every CLL specialist check-up for that reason and it should be common practice.
Looking back at your past posts, I note that your husband had a CT scan 9 months ago. If the lesion wasn't detected then, depending on the size, it could still turn out to be nothing to be concerned about, but perhaps his remission is unfortunately ending. If so, he's timed it well so that he will be able to have a gentler, non-chemo treatment. If the lesion is as expected due to CLL, treatment when eventually needed, should deal with it fine and your husband can look forward to another decent remission.
Neil
My experience agrees with AussieNeil comments. -
My GP, CLL expert and I have noticed that when new / younger radiologists read my scans, they find lots of items to mention and "throw them over the transom" for the experienced docs to sort out.
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Liver lesions are one of those things mentioned a few times in my past, but the docs conclude that the risk of a biopsy ( health complications or missing the lesion ) is not worth the value unless the lesion is noticeably changing size over time.
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So when they have the radiologists look at past CTs for comparison, the same lesions are there, just not mentioned by the previous radiologist.
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Len
Thank you , your reply is very reassuring and helpful.jenny uk
Jenny, at diagnosis I too showed a lesion on my liver. A PET scan showed it wasn't active metabolically. It's still there after a decade, benign as far as anyone can tell. I have never needed any treatment for it. Any new pathologist (since I have done various studies at different places) reading a scan for me, comments on it. We do get odd growths in our bodies. I also had cysts on my ovaries that would come & go throughout my life. Please try not to stress, part of the "good" of routine scans is that we catch things early, if they do in fact need to be acted on. My understanding is, if there aren't any other symptoms of liver disorder it's most likely benign. So the followup MRI is likely to see if it is indeed metabolically active. Even then, it may simply need to be excised out, like the precancerous cells in my cervix/uterus were when I needed a LEEP. Catching things early means they likely can be removed before they spread, if they turn out to be malignant.
I too have CLL in my head sinus nodes, and many of my "unusual" symptoms for a CLL patient are due to head symptoms from the head lymph node involvement. Is this what you are referring to, as "CLL in his ears"? It was tough to have my long almost 5 year remission end, but that was about 4 years ago and after a few bumps I seem to have found a treatment that has minimal side effects. It's tough to come out of remission, but likely won't kill him. I am not trying to downplay your concern, just share that unfortunately many of us likely have to deal with cycles of treatment/remission.
Thank you, SofiaDeo for your reassuring reply and positive reply. The CLL was in his ear lobes and his penis and that was the only symptoms he had. jenny uk
Hi sorry to jump on here but I was diagnosed last October with cll . I have bad fatigue constant headaches inflammation in my head I’ve seen various consultants who all point me back to my hematologist. I have swollen lymph nodes constantly in my kneck and have queried this with my hematologist but as I’m early on has said I shouldn’t be having these symptoms with cll. It’s interesting to read of cll in your head as I feel like nobody is listening to me . Thank you
Suki581, someone who knows more than me, there are many on this forum, I’m sure will be replying to questions. I myself am, we believe, in my 3rd year with a current WBC of 73,000. I am in W & W and don’t believe I’ll see treatment anytime soon. I do get headaches, aggravating sinuses and aches in my back and neck and joint. My lymph nodes are swollen and my hematologist checks everything at 3 month checkups. I am 72 and other than CLL, have no health problems. I take ibuprofen when needed and use a saline spray for my sinuses. Naps are taken when I know I just can’t move another step, gratefully, not too much fatigue.I read what others have learned through their experience and post in this forum. This forum has helped to keep “fear” away from my thoughts. I am glad you posted and let us know what your doctor recommends. Sandra😊
Oh you can definitely get head symptoms. Last year I was even starting to hear my heartbeat in my head when lying down at night, which stopped when I got on a treatment that worked. My nodes were changing size such that the blood flow in that area was affected, leading to hearing the heartbeat.
Have you had any of these neck nodes biopsied to find out if you have more of an SLL presentation than strict CLL? Or is your blood cell count high enough to where it is definitely a CLL?
Hi my blood count the highest has been is 17 so very early on and lymphocytes 10 . I spoke to a specialist nurse the other day at the hospital and she did mention about it can be more in your lymph nodes . I just want to get to the bottom of the pain etc in my head as I’ve been off work since June due to symptoms. I’m 48 and whatever is going on has floored me I was healthy, fit and working full time until all this. Thanks for your reply
IMO having symptoms like constant headaches, to where your daily life is impacted, is a reason to push for treatment sooner rather than later. Find a CLL specialist, they will know more about potential symptoms & treatments instead of docs who say "oh that can't be from your CLL ". I went through that, too, and have had to change docs a few times.
Even before we knew my doubling time was 4 months, (thus qualifying me to start treatment by most standards even though my other blood cell components like neuts, platelets, RBC were still normal) I was talking about treatment because at age 52 I couldn't concentrate and my fatigue was debilitating. Remember that our cancer is a small percentage of cancers overall (even though it is currently the most commonly diagnosed blood cancer), and unless you have either a CLL specialist or a hem-onc who has had a few patients with this so is somewhat knowledgable, most hematologists have zero experience with CLL. And unless they have access to current literature, and read up on CLL regularly, their information is likely outdated. Whatever your numbers are, if you are so affected that you can't live your daily life, you might be happier overall starting treatment & clearing up those symptoms. Quality of Life (QOL) is a valid reason to treat any disease state, not just CLL. Keep stressing your QOL is awful & that should get someone's attention. It's against standard medical practice to ignore QOL issues.
Thank you so much hopefully I’m speaking to them again this week. I don’t know why but I just keep thinking that even though I feel dreadful all the time my immune system is fighting it . I never thought they would give any treatment until it couldn’t anymore. I need to do more research, thank you again for your reply
Completely agree with SofiaDeo.
Sounds like perhaps you have the SLL presentation of CLL. In that case the doctor should understand that the impact of node growth is likely a bigger issue than your blood counts. I have SLL presentation and it was issues with my nodes that determined treatment.
Did they figure out the issue with your adrenal gland?
From an earlier post sounds like you are in the UK (but you spell hematologist like an American!) so maybe someone from the UK can chime in on best way to reach a CLL/SLL specialist.
Hi yes I’m in the uk . Yes thankfully the adrenal mass of nodules was non functioning so they will do yearly mri to keep an eye on them . I hadn’t realised hematologist was spelt differently in the uk ! Thank you for your reply also will definitely look into the cll/sll.
I’m afraid I don’t know any medical answers, although the replies you’ve had sound very reassuring, but I am sending you a big hug!Stay safe,
Fran 🤗
CLL in his ears and penis. Wow.
God bless you and your husband with a successful outcome from this new development. Sandra🙏
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