I had a lymph node that was noticeable in my neck. When my consultant checked it he said it was not that big and nothing to worry about. He has since given me a yearly blood test and remote checkup. I have been on W&W for about 7 years and noticed this lymph node about 2 years ago.
I have now noticed a lymph node under my chin. It is small but do I need to get this checked. I was told by the consultant that I had a lot more enlarged lymph nodes around my body and that it is nothing to worry about because of their small size.
Is this correct ? Your answer would really help my worry.
My bloods have been good.
Thank you in advance
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Pav545
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Hello Pav, I have numerous lymph nodes in my chest (a recent CT scan), and especially in my neck (a recent ultrasound scan).... Below my right ear I have one the size of a grape (the largest).......They can be slightly tender, at times, but the NHS don't seem to be overly bothered, nor am I.......
Lymph nodes tend to wax and wane, with 'our weather'...........👍
We have upwards of 600 lymph nodes around our body, typically under a centimetre in size.
11q del CLL is associated with greater degree of lymphadenopathy, so with that FISH test result, we are more likely to have a chipmunk appearance prior to starting treatment.
The NCCN Clinical Guidelines also specify 10cm nodes as a sign for treatment:
"Progressive, symptomatic, or bulky disease (spleen >6 cm below costal margin, lymph nodes >10 cm"
The NCCN remains aligned with iwCLL because of clinical trials that still cite iwCLL, I believe.
The word, "symptomatic" is subjective. Some doctors take it to mean uncomfortable at all, or even cosmetic. Others take it to mean affecting nerves, circulation, or organ function.
I believe that >= 5cm was considered bulky disease by Dr. Philip A. Thompson at M.D. Anderson in his clinical notes, though elsewhere, I've seen 6cm, 7cm, and other sizes mentioned.
Bulky nodes carries an additional risk for TLS (Tumor Lysis Syndrome) and Infusion Related Reactions to Rituximab and Obinutuzumab. I was admitted for my first infusion on the basis of 5cm nodes and high ALC (>25 x 10^9/L) being a TLS risk. So, some doctors do treat before 10cm.
I would add that the iwCLL Guidelines were last updated in 2018, when cytotoxic chemotherapy was standard, and delay of treatment to avoid treatment related adverse effects was a major consideration.
I too have CLL and on W&W and my lymph nodes have been my only problem. There are times when the nodes in my neck have been troublesome one being the size of half a hens egg. But then after about 4 or 5 months they go down. I have had a scan and all the lymph nodes in my body are slightly enlarged as is my spleen. I was diagnosed with CLL around 14 years ago and to date these and tiredness have been my only symptoms. My bloods are only slightly elevated and I have them checked annually. So I try not to worry about it and feel blessed that things haven’t progressed.
I had my neck lymph nodes swell - I was so concerned until my oncologist said they will swell and sometimes get tender when I am fighting an infection. Some days I could tell they were there, other times not so much.
It’s amazing how small they are even though they feel huge. It took me a while to feel comfortable with the swelling and trust that the swelling was just a symptom. I’m now on acalabrutinib and one of the first symptoms to be relieved was the swelling.
Good luck to you! This is a great place to find information!
I'm not sure how the lymph nodes decide where to enlarge. Many here seem to have then on neck and face and mine are in the abdominal area. I do think at least at one time the staging was based on if they were both above and below the thoracic boundary. My CT scan didn't report that as the case.
However, there are new things being learned all the time, some ideas will be adjusted when there is adequate proof. So, try not to let it bother you if your doctor tells you, unless there are accompanying things happening because of them ( pain, trouble swallowing, breathing , etc.).
I can remember well the week I started to notice swollen lymph nodes under my chin. I’d had a tiny one under my ear for a long time but it wasn’t viewed as particularly significant. My ALC and WBC started to raise too and in honesty, I freaked a bit imagining all kind of sinister scenarios. My GP was clueless and my haematologist underwhelmed. Lymphadenopathy is just part of the CLL landscape and they expect it. At this point I’d also been on W&W for nearly 7 yrs.
My WBC did level out thankfully and was seen as the result of an undiagnosed viral infection. The nodes did not however and continued to proliferate until my face and jaw looked square! The eventual CT scan revealed widespread lymphadenopathy and it became clear that treatment was on my imminent horizon (plus I was suffering constant infections and also required IVIG).
Aesthetically I found the swollen nodes very unpleasant and there’s only so many techniques with a scarf to disguise them.
Ibrutinib ‘melted’ then away rapidly and I noticed the small swollen nodes behind my neck actually disappeared overnight!
Size as discussed and whether they’re symptomatic or impeding vital organs are the key issues. I’m afraid CLL and particularly SLL can be a very lumpy condition. Comes with the territory and whilst scary, usually nothing to worry about.
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