New and Undiagnosed

[ETNsilverstar]

Hello,

I'm new around here and do not have a CLL diagnosis at this time. I know it's bad to chat with Dr Google, but I just received an abnormal lymphocyte count on a blood test yesterday. I did some research and eventually stumbled on this site, so I'm hoping to hear your thoughts.

I've never had abnormal counts before (that I know of), but I have the other symptoms of CLL. I've had enlarged lymph nodes my entire life, but no doctor has ever checked into them at all until now. So I guess CLL just kind of fits perfectly with the rest of my health puzzle.

So I guess my question to all of you is...did you suspect a diagnosis of CLL before you were officially diagnosed? If not, did you look back on things and feel like it just made perfect sense all along?

I'm trying to stay calm and not jump to conclusions, but it fits so well and my boyfriend is freaking out about CLL being a potential diagnosis (and making me freak out when I'm trying to be calm). I'm waiting on a call back from my doctor now because I saw my results online and I don't know if they check them out right away or not.

Thanks for listening to my rambling!

[PlanetaryKim]

Hi ETNsilverstar. I think that a single abnormal lymphocyte count could be due to many possible factors, as could a lifelong history of lymph node enlargement. So you need a doctor to investigate further before you can even guess on this, really.

I personally did not suspect (or even know about) CLL before I was diagnosed. But I was suspecting some kind of lymphoma. And indeed that's what CLL/SLL is.

I think most people aren't suspecting anything at all when they get their CLL diagnosis. The news comes out of the blue when they have gone in for a routine blood test for something else.

Good luck,

kim

[ETNsilverstar in reply to PlanetaryKim]

Thanks Kim! I know I'm most likely jumping the gun, but it's nice to have a little reassurance while I'm waiting for the doctor to call back.

I went to an allergist and he ordered some basic blood tests because he noticed my enlarged lymph nodes and wanted to check my thyroid. I have three lymph nodes (that I know of) that have been enlarged for the majority of my life, and he found a few more that I never found on my own (though their enlargement could be temporary).

Thanks again!

Becky

[Newdawn Administrator]

Hi ETNsilverstar.

It’s actually more unusual for people to have typical symptoms prior to diagnosis and most discover via blood tests for unrelated things. As Kim has said, one errant lymphocyte count doesn’t automatically mean CLL. It can be due to a self limiting infection and enlarged nodes are the immune systems way of trying to deal with that infection.

You sound to be younger. What symptoms are you experiencing that have made you take this jigsaw puzzle and probably put an additional piece in? Could you possibly have mono or some other infection that would also give errant lab results?

Try to stay calm and not catastrophise things at the moment because there’s no definite diagnosis and there’s a much, much greater chance that it’s not CLL.

If you do find yourself needing us, the support will be here. I suspect your doctor will inform you quickly if there’s a problem.

Fingers firmly crossed.

Newdawn

[ETNsilverstar in reply to Newdawn]

Hi Newdawn! Currently I appear to have no infections. I've been in and out of the doctor's a lot recently, and had 2 CBCs done, though I don't have the results of the other since it goes into a different system.

I first found the symptoms listed on the American Cancer Society website. It lists Weakness

, Feeling tired, Weight loss, Fever, Night sweats, Enlarged lymph nodes (often felt as lumps under the skin), and Pain or a sense of "fullness" in the belly (this can make someone feel full after only a small meal), which is caused by an enlarged spleen and/or liver.

I have had fatigue for a long time, which is part of why I finally went to see a doctor and have been in and out so much. I have occasional weakness, weight loss, and fever. I have night sweats regularly even with light blankets, I have 3 enlarged lymph nodes (as well as enlargment and pain in my lymph nodes with no tie to an illness for the last two years in winter, but I was just put on antibiotics and steroids and never given any blood tests), and the pain or sense of fullness is regular but not constant.

I guess I'm just trying to ease my mind that CLL is even a possibility, so I really appreciate your comment!

[Newdawn Administrator in reply to ETNsilverstar]

I can understand your concern Becky and can see from your symptoms why Dr. Google has lead you to the possible CLL possibility. It is unusual however not to have had any previous abnormal blood counts (that you’re aware of) if your symptoms were so pronounced.

Please let us know how it goes and the very best of luck.

Newdawn

[ETNsilverstar in reply to Newdawn]

Yeah, and I know the symptoms can be caused by a million things as well. I'm not sure how familiar the doctors around here are with CLL, so I know they might not give it a second thought. Peace of mind would be nice though.

Thanks again!

Becky

[Shedman in reply to ETNsilverstar]

Might be worth a vitamin A test; VAD is linked to weakened immune health, thus raised lymphocytes, lymphadenopathy, frequent infections, fevers, fatigue... If you have any strange artefacts affecting your eyesight - dry eyes, pain or difficulty with bright lights, a pattern of worsening eyesight too.. In UK vitamin A tests are deemed poor value since VAD IS 'very rare', but with your symptoms, in absence of better explanation, I'd want it checked. If diagnosed, VAD is readily corrected, with health response typical after a lag period of perhaps 3-6 weeks.

Good luck. First to get haematology to rule out CLL.

[ETNsilverstar in reply to Shedman]

Thanks! I will see if the doctor can check that as well to help rule things out.

[ETNsilverstar]

Are there any tests that you would recommend that I request to rule out CLL? I'd just like to be prepared, because I think a confirmation either way would be comforting.

[Newdawn Administrator in reply to ETNsilverstar]

You need a flow cytometry test Becky. It’s a blood test and most of us are diagnosed in this way.

Newdawn

[ETNsilverstar in reply to Newdawn]

Alright, thanks for the advice! I'll see if my doctor will order it just in case. I saw so many different tests when reading posts, so I really wasn't sure which was best!

[Newdawn Administrator in reply to ETNsilverstar]

The initial diagnostic test is the flow cytometry and this link explains what they are looking for on the cells and their make up when this immunophenotyping is done.

cllsociety.org/2016/03/diag...

Newdawn

[ETNsilverstar in reply to Newdawn]

Thank you so much! Is there a different test for SLL?

[Newdawn Administrator in reply to ETNsilverstar]

Rarely, CLL cells may not be detected in the blood but only found in enlarged lymph nodes. As you’ve obviously researched, this is a form of CLL localised to the tissues and often referred to as small lymphocytic lymphoma (SLL).

Quite often the ALC (absolute lymphocyte count) may be much lower than the expected CLL threshold and it’s necessary to do a biopsy of an enlarged lymph node but it happens much less often.

CLL and SLL are essentially the same disease, with the only difference being the location where the cancer primarily occurs. When most of the cancer cells are located in the bloodstream and the bone marrow, the disease is referred to as CLL, although the lymph nodes and spleen are often involved. When the cancer cells are located mostly in the lymph nodes, the disease is called SLL.

This link is very explanative;

webmd.com/cancer/lymphoma/s...

Hope this helps to explain but please don’t pre-judge the outcome based on this information. As you’ve mentioned, there’s heaps of other reasons for the symptoms.

Newdawn

[ETNsilverstar in reply to Newdawn]

Thanks again for all your help! The information is definitely reassuring.

[cllady01 Former Volunteer in reply to ETNsilverstar]

Are you seeing a hematologist? Unless you are, I don't know if a PC or ENT would run the tests you need to diagnose CLL.

Sorry, I can't tell what Dr. you are seeing from your posting.

[ETNsilverstar in reply to cllady01]

The doctor that ordered the test is an allergist. My PCP referred me to the allergist, and is the doctor that I've seen a lot recently. But no, I'm not seeing a hematologist.

[Sepsur]

If there is one thing I’ve learnt on my journey is that a moment spent worrying is a moment wasted. Do more, worry less. I got diagnosed whilst in a coma overcoming Avian Flu, double pneumonia, severe ARDS, multiple organ failure & septic shock. 3 days before all that, I was skiing with my family in Austria. With the gift of twenty twenty hindsight - I’d been suffering from the effects of having CLL for a few years. Tiredness beyond the norm, joint pains, night sweats, a failure to heal if cut or injured, not able to throw off infection as I once had. 2yrs before I was diagnosed a blood test for high cholesterol flagged something. They wished to retest, I was too busy...driving myself headlong into ICU.

Now I am diagnosed, I just have to be careful and sensible. And it’s so true...no-one gets out of here alive - don’t waste what time you have looking for what might be wrong.. they’ll tell you what’s going on with you and if you’re not satisfied, ask another. With both of my in-laws passing away in the last two months, one from a brain tumour, the other, COPD, I’m thankful I have CLL - they thought at first it was AML which put me beyond feasible treatment.

[Ernest2]

I guessed a bit before I was properly diagnosed as my father had CLL (I didn't know at the time my grandfather also had it but very late in life).

I think CLL can be harder for partners doing the caring than the patient, so look after him.

Best of luck with the diagnosis,

Ernest

[amberhead]

Hello! Of course wait for the results but also trust your gut. I am someone who never goes to the doctor unless something is wrong. Before my CLL diagnoses you could count on one hand the times I had been in the past 10 years.

When I went to the doctors this year, I knew something was wrong and flat out told the doctor that I thought I had cancer. Cancer runs in my family and I had had some funky blood work a few years ago that the doctor never really said anything about but when I started not feeling well this year and I looked over the results again in detail I was pretty sure it indicated cancer (high WBC, High Lymphocytes, smudge cells). Add that to my symptoms of night sweats, lumps in my neck, lethargy and shooting pains all over my body and I KNEW something was not right.

Unfortunately the first doctor didn't take me seriously, she tried to tell me I was hormonal and depressed. She ordered hormone testing and an ultrasound of my thyroid (but of course not the lumps in my neck or a CBC). Needless to say, I put my foot down, refused to get out of the ultrasound chair until they did my lumps and raised hell until they ordered a CBC. I demanded to switched doctors even before I got the results (the doctors office tried to insist I had to follow up with the original doctor but that wasn't happening) and became much more proactive in asserting myself and researching things.

Low and behold, as a 36 year old female I did in fact have CLL. If I were not as strong willed/stubborn/"B- - -chy" as I am, I could have "trusted" the first doctor that I had seen several times over many years and I would have left there just thinking it was all in my head. Know yourself, know your body, ALWAYS get a copy of your blood work and research each level yourself and ALWAYS get a second opinion! Don't mean to alarm you but also don't want anyone else to be dismissed when something may be wrong.

[PlanetaryKim in reply to amberhead]

Great advice! Agree 100%. Nobody knows our own bodies as well as we do.

kim

[ETNsilverstar in reply to amberhead]

I always try to go with my gut, but I've had problems with doctors dismissing me in the past. The biggest time was when I was in middle school and I got sick, and my doctor at the time said I must be faking it to get out of school because he couldn't figure out what was wrong. So I don't have much faith in doctors and do a lot of research. I also don't go to the doctor unless I absolutely have to, but the last couple of years I've been having to head off to urgent care in the winter because my lymph nodes randomly swelled--once was after an illness, so the timing was odd, and the other I didn't have anything that I was aware of. Both times I didn't go in until the pain in my lymph nodes was pretty severe. I've never been a particularly healthy person, but the reaction was extremely out of the norm for me, though I didn't pursue it then. I tried to, but I already felt dismissed by my PCP and had trouble finding a new one. By the time I found one that I wanted to go see, I didn't have the energy to make it happen anymore. If I can't get any doctors to take my concerns seriously, I can hopefully convince them to do a biopsy of my lymph nodes if the extreme swelling occurs again this year.

Thank you for the comments! My allergist did call back and said they weren't concerned, but I'm going to go to my PCP to discuss it. It makes me feel like I'm just crazy hearing a dismissal from a doctor, but I've felt something was not quite right for a long time, and I think it's time to get it looked into.