Did you find out you “had” CLL long before it ... - CLL Support

CLL Support

17,697 members28,893 posts

Did you find out you “had” CLL long before it was diagnosed?

Pin57 profile image

Wonder how common that question is to this group? ... and if you fall into that category what kind of reaction or thoughts came to mind?

Reason I ask is, I “thought” my CLL was maybe a 2 year till diagnosis thing. Then, having multiple General Practician (GP) docs over past 3 decades, I decided to ask them for my past test records, especially any Complete Blood Count (CBC) test results. Bad idea? Well read on...

I started my research journey with doc #3 (going backwards) since doc #2&#1 per past two years were the ones to show me CBC reports n explain them. They acknowledged CBC Irregularities which led to my CLL diagnosis in Sep 2020.

So my doc #3 covered a span of 6 years before docs #2&#1 and I received an envelope full of CBC reports yesterday from #3 doc. Sure as poop ... CBC results for those 6 years were nearly identical as they are now! So that puts me 8 years in W&W mode (at least) versus what I thought was 2 years.

Doc #3 never had given me those CBC results (no I was ignorant to ask, Cus “if” things were ok per physical exam results I was ok with that) nor were my CBC results discussed, the mild but “high” blood markers WBC (White Blood Count), high lymphocytes numbers, etc. He had given me the other physical exam reports )n discussed those results) regarding cholesterol results (which was his wheelhouse specialty) since my family had history of heart disease. I get that and fact my CLL numbers were (and are mild): A-bit high WBC 14 with lymphocytes at 9, but platelets good 265, hemoglobin good 15, MCV good 95 and so on, all good. No big deal to doc#3.

My wife, so smart she is, made comment that “maybe doc #3 didn’t want to say anything about the CBCs since he knew it would only add stress and you’d just be in W&W mode” spot on comment. ... And “maybe” he monitored CBCs seeing the mild bad counts were “flatlining”.

I don’t think I’m going to ask doc #4 who covered the previous 10 years (or ...doc #5, another 20 more years) cus what’s the point ? W&W 8 years, do I need to know if it’s been 18 years? or ... 38 years? It’s not like it’s a Guinness World Record thing to “win”. What would I do with that knowledge besides update my HU profile? Lol.

Anyways, interesting it may be, it changed nothing except now in my tiny brain which is half full with CLL “what the heck” knowledge, there is the known I’ve had it for a longer time than had realized.

Ok, so what? ... just wondering how you out there reacted to new knowledge you’ve had CLL longer (maybe lot longer?) then you had originally known and did you do a “ok, so what”? Or...?

Crazy cancer this baby is.

26 Replies

A review of my previous 2 yearly labs showed abnormal ratios starting before I was officially diagnosed. Even though the reports were clearly asterisked "abnormal", no one from the docs ever notified me for followup. Had I known about the abnormal ratios, I would have investigated & likely been tested and diagnosed. I would not have kept up my 60+ hour workweek and perhaps my disease wouldn't have skyrocketed like it did. Because physical and emotional stress affects my personal disease state for sure.

I now get, and review, copies of everything.

Pin57 profile image
Pin57 in reply to SofiaDeo

Good point on work stress. Sorry to hear you had that experience, what did you do at your work?

I too endured 20 years of 50-60 hour workweeks with a stressful deadline-heavy job as a construction cost estimator, n last 5 years as manager of 21 people in same department. My one main goal when I became manager was to double size of dept and nearly did (went from 12 to 21 people) to give them a shot at 40-45 hour lunch-pail type work weeks to ease their stress (on them and on family life). Stress plays a health role no doubt on the body (has research tied it to CLL?) and on the family for sure too.

SofiaDeo profile image
SofiaDeo in reply to Pin57

Stress isn't linked to CLL per se, but it can aggravate any disease state. There's some evidence for this. But I don't think anyone is willing to spend the money to fully demonstrate this link, and may even be somewhat discouraging to those who do. If there is a proven correlation between stress and any disease state, I can just imagine the lawsuits!

Pin57 profile image
Pin57 in reply to SofiaDeo

Read your bio... wow, now I get the 60+ workweek hours. That sucks.

Hi Pin57,I was Dx’d in 2018. My oncologist traced the beginning of my CLL to the end of 2011. My reaction? I was Stunned!! 😳 So almost 10 yrs on W&W! I feel very grateful! At the same time tho, it feels surreal to think I’ve had this for nearly 10 yrs!! I’m thinking the surreal feeling is because of receiving the dx 3 yrs ago not 10.

Thank you for bringing this up!

Enjoy Your Day 😎


Pin57 profile image
Pin57 in reply to OkanaganCLL

Yeah, acknowledge the gratefulness of being in W&W mode like you as so many on this HU group are not on that state. Also, your “stunned” is a good summary word of the news.

Yes,I know.I had lymphocitosis 4-5 years before Dg.

I had a lymphocyte count of 4.5 in 2010 and was diagnosed in 2013. I struggled to get fit during those three years and couldn't work out why I was increasingly tired.But I'm glad I wasn't formally diagnosed any earlier. It would have cast a shadow over my life.

I too was told of increased Lymphocytes ( lymphocytosis) 18 months before actual diagnosis. I was able to convince myself that it wouldn’t progress to a full diagnosis. I’m feel pleased that I was spared the worry that I’m now feeling.

Checking my previous CBCs, I only had CLL for about 1 year before diagnosed.

Hi there, I was diagnosed 5 years ago - but no symptoms!But I realise the “symptoms” for CLL I have had since a child.

I used to suffer extreme fatigue and anaemia - and with night sweats occasionally from as young as 8 years old.

Coincidence who knows ? But it does make you wonder doesnt it 🤔

But onwards and upwards.

Stay stay

Kind regards

Hello Pin57

I find it is not uncommon for CLLers who have had doctors suggest they might well have had CLL several years before actual diagnose of CLL. I how ever can say that I did not have CLL long before being diagnosed with CLL. I had extensive blood testing due to cardio angiogram just 6 months before diagnosis of CLL. Angiogram was the result of a nuclear cardio stress test rather that cardio treadmill test, because lab tech thought I looked like I could not do treadmill. I strongly suspect that nuclear stress test triggered my CLL. Angiogram was a waste of time and money with only 15% blockage in one main heart vessel. Told me to come back in 15 years. I was able to review past blood testing and no signs of CLL. My CLL was diagnosed by my GP. My CLL was however very aggressive and only had 14 months before treatment required.

I was diagnosed in 2018. I had wonky blood tests for about 5 years before my gp told me to see a hematologist. She thought I must had had inflammation somewhere. I remember asking her if I had something “bad” to which she replied “ your numbers have stayed the same. If it were something bad they would have changed”. I was shocked when I got the CLL diagnosis. On watch and wait My on my fear is not having the post vaccine covid protection. Glad to have found this site.

A massage therapist told me to check out swollen lymph nodes in October, which I finally did in December. They thought I had lymphoma. In January, the biopsy came back as CLL and then in March, I got FISH test back and found out I was TP53/17p deleted. So I had to "get over it" 3 times!

My CLL was diagnosed in 2016 - recently I found a printout of some blood numbers from 2012 - and the white cell numbers were high. I remember the doctor telling me then that I “have an infection somewhere”.

My diagnosis came about because I landed in the ER with appendicitis. They did a CT scan on me and said I had enlarged peritoneum, spleen & more that they felt was due to cancer. My labs were within range & had been for several years prior. A few weeks after my appendectomy I started the diagnosis workup to determine what “kind” of lymphoma/leukemia I had. A few months shy of 5 years from my appendectomy I was in treatment for CLL.

I was diagnosed late 2020. The hospital that I am being treated at told me they reviewed the last bloods they had for me in 2012 (ironically the year my father died of another form of leukaemia) showed raised levels of WBC, so it probably dates back to then, but they hadn't had any further bloods until now. To be honest, I'm glad I wasn't told, as I would have had this niggling away at me for the last 8 years, whereas I've just got on with my life. I'm glad it finally has been picked up though, as the start of treatment is nigh.

I was diagnosed in November 2017 when my white count was at 11. Looking back at previous blood tests I probably could have been diagnosed in 2015. So I guess I have been W&W since 2015. My internist in 2015 had been ill and passed away. I went to a new internist about 18 months later. I am glad that I have an oncologist/hematologist now whom I see every 4 months. He closely follows everything.

Diagnosed in 2013 with SLL. Twelve years earlier (2001), I ran fever but felt fine other than being cold. This "fever with no cause" repeated periodically. My GP ran blood tests but found nothing.

In 2013, I ran "fever with no cause" for a week. I went to see my doctor & had a chest x-ray, then a chest CT scan & then a bone marrow biopsy that led to the diagnosis of SLL . All of the swollen lymph nodes were internal.

I was Stage 4B and in W&W for 2 months with 1 more month per my request for Christmas. Treatment began Jan 2014. Seven years now on ibrutinib.

I was diagnosed approximately six months after I got CLL (I know this because I had perfectly normal bloodwork the year previously ) then watch and wait for 10 years before I needed treatment. The diagnosis cast a huge shadow over that 10 years which I could have enjoyed had I not known what I thought was going to be the doom and gloom of my future. Sometimes ignorance is bliss. But hindsight is 20/20. Getting the diagnosis did not free me to change my life“ for the positive. Rather it made me sad anxious and depressed and I had difficulty enjoying my life. No matter how much I tried to enjoy my life, I couldn’t shut off the fear of the future. When I finally had FCR it ended up being nothing like I had built it up in my mind. It wasn’t so bad. But looking back I wish I had not known until I needed treatment

Mnikc profile image
Mnikc in reply to PJ60

I so relate, 6 years ago, just moved, just divorced, w&W has added a level of worry that i did not need. Im “sickly” from autimmune disorder alread, very stressful.I am constantly ill w one infection or another, right side of face and neck swells, not w big nodes but generaalized w small nodes, sinus and salivary gland swelling/infection chronic.

My WC has not flared to high numbers. But im unable to exert myself like swimmining for 10 and the next 48 hours are spent sleeping and in pain from head to toe.

I want treatment, whatever it nay be, my quality of life is a 4/10 at best

Interesting question! I was diagnosed with CLL in 1997 after having surgery to excise 2 "lumps" that turned out to be enlarged lymph nodes. Initially I was told I had Non-Hodgkins Lymphoma, but after going to MD Anderson, the diagnosis was changed to CLL due to 30% bone marrow involvement.

One of the "lumps" that was excised in 1997 had actually been there since 1993. In 1995, the doctor felt 2 enlarged lymph nodes in my left arm pit, so those were excised and labeled "reactive" but not cancerous. Although there were definitely hints that something was going on, my blood work was all in the normal range, and I was blissfully oblivious. My white cell count didn't actually rise above the normal range until a few years after the CLL diagnosis. So, instead of a 21 year & 5 month W&W, I could actually say I had a 25 year W&W!

It may not be that strange, but initially the disease in my body manifested through the lymph nodes. However, as time passed, the lymph nodes all went down as my white cell count began to climb. My spleen kept growing and reach almost 23 cm before starting treatment in 2018, but lymph node involvement was very minimal.

I was not one to go to the doctor for regular checkups so hadn't had any bloodwork done in decades and any "symptoms" I had were just chalked up to getting older. I had a problem with my eye back in 2018 which sent me to an ophthalmologist. He told me my eye issue could have been a result of diabetes or stroke so I was expecting the bloodwork he ordered to show I had diabetes since my father had it. Not so....my bloodwork came back with a WBC high enough to require treatment. I was diagnosed in July and on Ibrutinib by October. I'm very thankful I was not diagnosed earlier.....I avoided many years of W&W.

Yes I was diagnosed in late 2017, but on closer inspection at that point it was apparent I had raised counts as far back as 2005. Given that knowledge it then made the gradual deterioration and odd health issues I had more explicable. Whether knowing earlier would have helped or not is a swings and roundabouts sort of thing. Useful knowledge but more to worry about.

I was diagnosed in Jan 2016, but looking back at my past CBC tests, my ALC moved above 5K sometime between July 2011 to December 2012. This was a very stressful period for me and I do think CLL development is related to excess stress. I was seeing a resident in an academic medical center as my Primary care doctor and the supervising doctor wrote in my note in December 2012 asking my resident doctor to monitor the high WBC. My resident doctor never bothered to ask me to come back for another CBC. I only discovered this note when I requested the full medical records from the hospital in 2018 in preparation for my MD Anderon specialist visit. The next CBC was done in October 2015 when I did not feel well and it took 2 months to get a diagnosis of CLL in Jan 2016. I wish I had been diagnosed earlier and I might have stopped its development way earlier or reversed back to MBL. I am approaching almost 10 years of W&W. I am grateful for all in this forum sharing their wisdom of living with CLL.

Pin57 profile image
Pin57 in reply to EugeneL2

Thank you for your reply. Stress story accelerating medical issues isn’t unusual, heard from several others on that, sorry to hear yours. Hope all goes better.

You may also like...