Diagnosis of CLL

[Jam53]

Just been diagnosed with CLL from a biopsy taken of Bowel during surgery. Is this a normal way to be diagnosed or unusual ?

[HopeME]

Your case is a bit unusual in some sense but typical in another sense. In my case, elevated white cells were present in a blood test that was ordered when a lymph node in my neck stayed swollen for weeks. At that point a fine needle biopsy was taken and the disease was diagnosed. In your case a swollen lymph node in your bowel was suspicious (during a colonoscopy?) and a biopsy was conducted. So to answer your question diagnosis typically happens via a blood test or a fine needle biopsy of a lymph node or a combination of both. The location of your lymph node is unusual but a biopsy isn’t.

On another note, CLL is a terrible disease but it could be much, much worse as usually CLL is controllable and you can live a relative normal life. I’m four years from diagnosis as of this October and I live normally.

Best

Mark

[Jam53 in reply to HopeME]

Mark thank you for replying. I was actually undergoing surgery for a resection of part of my Bowel . They just take biopsies as a norm. My Consultant said he was 99.9% sure there was nothing untoward . You can imagine how shocked I was when I got the phone call telling me the results. I haven’t had any blood tests or scans yet. My CT scan is next Wednesday and I have an appt at the end of the month to see a Haematologist. Fingers crossed everything is ok and it will be just watch and wait 😊

[HopeME in reply to Jam53]

Hi Jam53:

I’d be surprised if you weren’t placed on watch and wait for a period. Read the pinned post and come prepared to your appointment with a written list of questions. It’s easy to forget your questions when the appointment starts because the discussion can veer in unexpected ways. Ask your doctor if you can take an audio recording of the appointment and/or bring someone with you to listen separately. It’s easy to mishear/ not understand what the doctor is saying so having a recording or another person listening will enable you to reflect on the information after your appointment.

Good luck

Mark

[ksteinberglewis in reply to Jam53]

It is important to see a specialist or go to a good cancer hospital. My first experience was with a hemotologist who did the test ( you will probably get a FISH test which is a blood test that tells you what kind of CLL you have) but when I told him I wanted a second opinion, he fired me. Don’t go to a doctor who is afraid of you getting a second opinion. The other thing I suggest is getting in touch with the Leukemia and Lymphoma Society and they will send you out a lot of literature which will be helpful

[Jam53 in reply to ksteinberglewis]

I’m assuming you are in America which has a different system to UK. I have been referred to a Haematologist by the colon-rectal surgeon who did my surgery and I don’t have the option of going elsewhere unless I pay to be treated privately. I certainly can’t afford to do that. Judy

[mrsjsmith in reply to Jam53]

Judy,

A couple of points. You are correct and in the UK we usually only get a Fish test pre treatment.

If there is another hospital within a reasonable travelling distance that has a CLL specialist then you can request to change hospitals. I did by asking my GP for a referral. It is fairly easy to check what, if any specialisms the Consultants have.

If you give the area you live in I am sure someone here can make a suggestion.

Colette

[Jam53 in reply to mrsjsmith]

Colette thank you . I was only diagnosed 2 weeks ago so it’s all very new to me. I am having a CT scan next week and an appt to see a Haematologist on 31st August. I haven’t had any blood tests yet so until they have the results of the scan and hopefully bloods taken at that appt, I am a bit up in the air. I live just north of Newcastle.Judy

[mrsjsmith in reply to Jam53]

Judy,It is very early days and hopefully you may well never need treatment and yours has been caught early by that biopsy.I am based in London but from memory Newcastle is very well served with good hospitals.

Good luck with your first appointment and write down any questions and if you are allowed bring someone with you.

Colette

[Jam53 in reply to mrsjsmith]

Collette thank you. Yes Newcastle has quite a few large hospitals so I think I’m lucky in that respect. My daughter is going to come with me for the first appointment as I probably won’t take it all in. Thanks for your advice. This is such a knowledgeable group and I am grateful I found it x

Judy

[mrsjsmith in reply to Jam53]

Judy you were lucky to find us so quickly. It took me several years.

Yes your mind will go blank so for some appointments I take someone and we run through questions first and they write notes or ask the questions I forget. Do ask for, if not offered the contact details of your CNS ( clinical nurse specialist ) I am lucky to have two and they are my first contact with any problems or questions. Hopefully you will have one.

Colette

[Jam53 in reply to mrsjsmith]

Colette thank you again and I will post when I have more information as to what is going on with me x

[mrsjsmith in reply to Jam53]

Thank you and no problem,

I just wish that back in 2007 when I was first diagnosed I knew where to turn for help and advice.

Colette x

[ksteinberglewis in reply to Jam53]

You always have this group for support. They have a lot of collective wisdom.

[humaniquarian in reply to ksteinberglewis]

continuity of care is an issue with this doctor , The fact that he "fired" you is inexcusable . the Md should have gotten you another doctor

[kitchengardener2 in reply to HopeME]

I too was diagnosed from a raised lymph node in my neck. No other symptoms. That was 3 years ago and I have enjoyed a normal life since apart from being extra careful during this pandemic. My white cells were up a bit in June and I have a consultation on Monday when I may be told that treatment time has arrived. I have recently recorded a video for the Spot Leukaemia Early campaign for Leukaemia Care. This details my story.I am optimistic about treatment and hope to continue my current lifestyle.

[AussieNeil Partner Administrator]

In this early poll, "Discovered while being investigated/treated for another condition" was the most common way members reported being diagnosed.

healthunlocked.com/cllsuppo....

Neil

[HopeME in reply to AussieNeil]

Your memory is like an encyclopedia!

Thanks,

Mark

[AussieNeil Partner Administrator in reply to HopeME]

I wish!

[HopeME in reply to AussieNeil]

Then you are a very good librarian/researcher 😁.

[Sushibruno in reply to AussieNeil]

You're awesome Neil🙂

[wizzard166 in reply to AussieNeil]

Neil is incredible, and very valuable to all of us.

[Jm954 Administrator]

Hi,

CLL is a type of lymphoma and it can be found in almost any body organ/structure. It may have been in your bowel or, more likely, found in the lymph nodes taken during surgery. Presumably the nodes weren't enlarged if your surgeon thought there was nothing untoward so it's likely it's been found very early and may be the SLL presentation of CLL.

Jackie

[Jam53 in reply to Jm954]

Thanks Jm954, I’m not really worried about the diagnosis at the moment. I have no symptoms. Just need my CT scan to confirm no spread anywhere and up to date blood tests 🤞🤞

[lankisterguy Volunteer in reply to Jam53]

Hi Jam53,-

I hate to say this, but if they found CLL cells in your bowel (they found them in mine too) the CLL is already spread everwhere that you have blood and lymph fluid. And nodes will enlarge eventually (if they haven't already).

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CLL does not work like solid cancers- lung cancer, etc. When it reaches the point that the solid cancer appears in lymph nodes, means the cancer has metasticized and will spread quickly to other organs.

CLL rarely becomes a more serious cancer ( it can - and is usually called a Richters Transformation- to DLBCL, Hodgkin etc.) but that is around 1-2% of cases per year.

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The CT scan will more likely become baseline measurements for your lymph nodes, spleen size, etc. and the doctors will put you on watch & wait. You probably will have your blood tested every 3 months to see how quickly your ALC/Lymph# is rising. They will also watch for decreases in Hematocrit, Hemoglobin and Platelets that indicate when your bone marrow gets filled up with CLL cells.

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If you want to read more and see some videos of CLL experts explaining all of this, please click this link: healthunlocked.com/cllsuppo...

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Len

[Jam53 in reply to lankisterguy]

Whereabouts are you now in progression of CLL after it was found in your bowel ?

Judy

[lankisterguy Volunteer in reply to Jam53]

As my earlier note says, the CLL has always been there- and is everywhere you have blood vessels and lymph fluid. And inexperienced Hematologist doctor and Gastro doctor thought mine was MALT lymphoma

lymphoma-action.org.uk/type....

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But the expert pathologists and Hemotologists at Weill Cornell NY Presbyterian corrected that diagnosis to CLL.

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The CLL cells are everywhere in my body and yours. It is that way from the very start of CLL. You can read my history here: healthunlocked.com/user/lan....

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Len

[AussieNeil Partner Administrator in reply to Jam53]

Judy, further to what Jackie said, about 1% of us have the Small Lymphocytic Lymphoma (SSL) version of CLL/SLL, where this most common adult form of Non Hodgkin's Lymphoma begins in a lymph node rather than the bone marrow. In the 'SLL' form, the CLL/SLL cells are hard to find in the blood and it is usually detected by a biopsy of a swollen lymph node. 'SLL' can eventually become the 'CLL' manifestation when the B - lymphocyte blood count exceeds 5.0. Being the same disease, diagnosis is confirmed by an immunophenotype flow cytometry test of the cancer cells, which detects the unique expression signature of CD markers on the cell membranes and that they are monoclonal (duplicates).

Treatment is the same, unless SLL is caught early enough, when it can be treated and potentially cured by localised radiation therapy if the SLL is limited to one or a few localised nodes. That's extremely rare, because SLL usually remains hidden until later stage symptoms become evident.

I was diagnosed with stage 4 CLL/SLL (due to bone marrow involvement and an enlarged spleen) with enough monoclonal B cells in my blood for the flow cytometry test to work, although my lymphocyte count was normal. My GP noticed I had neutropenia in a regular blood test and arranged extra blood testing to find out why. About 2 years later my lymphocyte count had increased into 'CLL' territory. I needed treatment 11 years after diagnosis and my blood counts are now the healthiest they've been in 15 years.

It's not usual in the UK or Australia to do a CT scan at diagnosis of CLL/SLL but with the SSL expression, it will show whether it is localised or not. Likewise bone marrow biopsies are rare in these countries at diagnosis, where testing is deferred until it can inform treatment decisions. I had a bone marrow biopsy done because my platelets and neutrophils were low, which confirmed that this was caused by bone marrow infiltration.

Neil

[Jam53 in reply to AussieNeil]

Hi Neil, I have received today the diagnosis from histology of the Bowel biopsy. It says suggestive of CLL/SLL within Bowel wall and lymph nodes.Judy

[AussieNeil Partner Administrator in reply to Jam53]

As there are other lymphomas that can be confused with CLL/SLL, you do need that immunophenotype flow cytometry test to confirm the diagnosis. Let's see what your blood test and CT scan show.

Neil

[Jam53 in reply to AussieNeil]

Thanks Neil. I will no more at the end of August after my Haematology appt and results of CT scan.Judy

[kitchengardener2 in reply to AussieNeil]

Neil that was interesting about your neutropenia. Probably five years before my diagnosis, I enquired about a flu jab for my husband. The doctors receptionist said my husband didn't qualify but I did .... due to my 'chronic kidney disease '. That was the first I knew, no symptoms and no treatment. Do wonder now if it was CLL lurking?

[AussieNeil Partner Administrator in reply to kitchengardener2]

Many of us find evidence of CLL being present years before our diagnosis. After all, it's what you would expect with a chronic, slow growing illness. My GP looked back at my past blood tests and found out that I was neutropenic 2.5 years earlier. Not being uncommon with an illness, it was understandably ignored.

Neil

[kitchengardener2 in reply to AussieNeil]

Yes I am learning! I never suffered much with the 'common ' menopause but when I was about 56 and we were caravanning each weekend, I found that I would wake up drenched with sweat, I needed the windows open. I didn't worry too much having decided that I was getting away lightly. I occasionally have 'warm nights ' now but I am grateful for the fact I feel so well. I have an appointment with my consultant on Monday and wouldn't be surprised if she suggests treatment, she thinks Acalabrutinib might be my drug of choice. When we last spoke in June my white cells had increased, she was surprised that I wasn't overtired with the levels of anemia. I garden for hours and walk probably 30/40 miles each week. I have lost about 4lbs in weight over the last 5 weeks but I usually lose a bit in summer and I needed to lose a bit of tummy fat!!

I do so appreciate your knowledge and advice so thank you.

[2gizzy]

I was diagnosed by gynaecologist following ore op blood tests and I was referred to hematology department

[Jam53]

Hi 2gizzy, are you on watch and wait or have you needed treatment ?

[Jacksc06]

Hi. I was diagnosed when i was admitted to hospital with pneumonia.

[Vizilo]

I was diagnosed seven years ago as a result of a CBC blood test during an annual physical. Referred to a university hospital hematologist who confirmed cll with17p deletion (through an immediate bone marrow biopsy). No symptoms then, no symptoms now.

[1962jns]

My lymph nodes were examined upon removal from breast cancer surgery and that's how I found out I had CLL. on WW but have had fatigue for many years.

[wizzard166]

Hey Jam

The usual diagnosis comes after blood tests that create suspicion due to abnormally high WBC without a good reason for the elevated WBC; however, it doesnt matter what led to the diagnosis. At least you got diagnosed, and now they have a baseline to go forward with. My guess is that the disease is not already in an advanced stage, because I would think an earlier blood test would have led to further blood analysis for diagnosis.

Assuming you are early in the disease progression, you should have been referred to a CLL Specialist; if not, go see one. They will likely put you on Watch and Wait with a six month visit schedule. You'll begin to learn a lot from our site, and many members are very advanced in knowledge of our disease. Your CLL Specialist will of course be your Quarterback, but like many of us you will have questions in between and after visits with your CLL Specialist that our advanced Members can easily answer for you.

Good luck as you start out on this broken road.

Carl

[Jam53 in reply to wizzard166]

Thank you Carl for the info 😊

[humaniquarian]

diagnosis of CLL is 80% of the time an incidental finding, Over the years I've read that Cll is found as a result of a blood test done for other reasons ie: surgery . It's not normally screened for, like more common health concerns.

It's better that you do know rather then have something come up and be caught unaware.

[Jam53 in reply to humaniquarian]

Without a doubt.