Cll

[Astonmartin]

It's been 6 rears that I an on w&w with CLL. Does anybody knows if CLL will affect your liver? Recently I had a Ct scan and found few lesions on my liver. Waiting oN biopsy results. Any info will be appreciated.

Thanks

[MistyMountainHop]

I was diagnosed in 2014, had my liver examined...... I was told l had 'a' lesion on my liver...... "probably due to a (previous) cyst"....... No further probing and no treatment needed.... 2022...I'm still on W&W, and fine......

I hope you are too....

[AussieNeil Administrator]

After the spleen, the liver is the organ most likely to be infiltrated by CLL. My specialists have always checked my liver during my physical examination. However, benign cysts are fairly common in the general population and hence also likely to show up on CT scans in us, which is why, per choosingwisely.org.au/recom...

"In patients with asymptomatic, early-stage chronic lymphocytic leukaemia (CLL) , baseline and routine surveillance computed tomography (CT) scans do not improve survival and are not necessary to stage or prognosticate patients. CT scans expose patients to small doses of radiation, and can detect incidental findings that are not clinically relevant but lead to further investigations and are costly. For asymptomatic patients with early-stage CLL, clinical staging and blood monitoring is recommended over CT scans." (my emphasis) CLL specialists in the USA concur with this statement.

If your liver cysts have CLL present, that should be dealt with when you are treated.

CT scans are more common with the "SLL" presentation of CLL/SLL, because "SLL" is more likely to be diagnosed in stage 4 and enlarged nodes are more likely to be the reason treatment is started than with the "CLL" presentation.

Does the specialist who ordered your CT scan see plenty of patients with CLL? If treatment is recommended, please check if the reasons match those listed in the relevant CLL treatment guidelines referenced in this post: healthunlocked.com/cllsuppo... If not, I strongly recommend that you ask for a second opinion.

Neil

[Astonmartin in reply to AussieNeil]

Thank you both.He is my new oncologist as I moved in 2020. Same cancer center, Rocky Mountain cancer center. I am not sure if he is a CLL only specialist. Hard to find an oncologist only fir CLL. Do you guys know any online sites that you can research this by area or State?

This is the first time they did the Ct scan on me as I complained about abdominal tenderness on left and right side with lower back pain.

Neil I am going to check the links in your message. Thank you so much.

I am going not Wednesday for the results. Hope is nothing serious...wish me luck and say your prayers for me And my family

[AussieNeil Administrator in reply to Astonmartin]

CLL Society provides three lists of doctors for your perusal here:

cllsociety.org/toolbox/cll-...

[Astonmartin in reply to AussieNeil]

Thanks again Neil. You seemed to possess a great knowledge on CLL and a lot of info about it.

[peas50 in reply to AussieNeil]

Once again, Neil, your knowledge is much appreciated. Thank you.

[CycleWonder]

I too had a CT scan after diagnosis with CLL. I had some enlarged lymph nodes. The scan showed some lesions on my liver. The report says that was normal for someone my age. The scan also showed a potential thyroid tumor but after another scan, that also was nothing to worry about.

I would definitely look for a doctor that specializes in blood cancers.

[Astonmartin in reply to CycleWonder]

Hello Cycle,My CT scan also showed lesions on my liver. Hope you are right and that mine is same as yours. Do you remember what were the sizes ? Mine are within 1 to 2 cm. Did they cause you any discomfort especially on the upper right abdominal area?

[CycleWonder]

No. I felt no discomfort. I have a vague memory that because I gave birth to four children, the lesions were not unexpected. Any discomfort I have felt in my abdominal area has been due to heartburn, an enlarged spleen, and during recovery from a cycling accident (broken ribs and back, punctured lung, etc).

[peas50]

Hi Thank you for your recent post. I'm wondering how you are, and what your results were. I hope that everything is okay for you. I'm in Australia, 54 years old, diagnosed SLL in 2014, no treatment, but a recent CT shows increased number of lymph nodes, plus a number of new low-density lesions in my liver. The gamma blood result was 104 and has shown a good drop to 80 within the space of a few weeks. (I think 40 is top of the normal range?) Nothing else really suggest to me that I should be too worried and I'm super-happy about the drop in gamma results, but I'm keen to have a clearance so I can get on with general plans. Again - thank you for your original post.

[CycleWonder]

I am doing fine and my results do not show any issues with my liver. It was suggested the lesions in my liver were due to childbirth.

Some of your lesions are new which to me (not a medical doctor) would be more worrisome. I have CLL rather than SLL so I have little knowledge about SLL.

If you can, finding a CLL/SLL specialist might give you more peace of mind. Even if only for a consultation.

I wish you all the best.