CLL Support Association
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Advice please!

After 4 years on w and w , my consultant found 1 auxiliary nymph node was definitely enlarged. She was concerned because CLL usually manifests in similar swellings in both nodes, and apparently 1 is not normal. I remain on w and w with my next appointment in 3 months. If it has increased in size she is thinking it would be sensible to investigate by removing it.

So I am feeling a bit concerned( and I know I have been lucky to have had no other problems so far) and wondered if anyone in the community has had a similar experience.

For the record I am bialletic, 13 q mutated with a current lbc of 130

6 Replies

I have one node that is enlarged (not visible but able to be felt) in the groin area. Doctor not concerned. Stage 0 or 1 depending on who you ask. I am also 13q mutated. No other symptoms. (except some skin itching at times). All numbers in normal range other than ALC at 16.5. Diagnosed in Oct 2016. Blood tests started being abnormal in 2011.

Make sure you are seeing a CLL specialist...someone who only deals with this disease. A local hematologist is good, but having a specialist on your team is so important. As far as the node goes, I wouldn't worry about it as long as other numbers are steady and you are feeling good.

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I would proceed with a biopsy, to set your mind at ease...



I agree with Chris. There is reason to investigate. We are all different, and your node may not be anything but CLL--that was my experience in the same situation. I was told the Dr. wanted to rule out any other involvement that might be occurring. And, in my case, it was just CLL and, I guess, an anomaly.

Sound like you have an attentive and alert Dr.


Many thanks for these responses- I will update after my next appointment- hopefully with good news!


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Hello Drayton, I also had just 1 enlarged lymph node behind my ear for nearly 10 years. Later another developed on my neck and was investigated by the use of ultrasound but found to be consistent with that to be expected with CLL. A much larger one appeared under my jaw last October. All on the same right hand side. Hopefully, yours will be much the same as these but if it is checked out, your mind will be put at rest.


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Many thanks Holly- hope all stays well for you.


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