I have had CLL for about 2years! Watch and Wait! I seem to regularly produce enlarged lymph nodes and a CA 125 test which lead to ? Diagnosis of ovarian cancer! Also breast cancer and biopsy! All investigations lead back to CLL!
I now have nodes in my groin , under Right arm and under jaw! Is this just part of the disease to be expected or should I worry?
Our members have had quite a few scares about possible breast cancer turning out to be due to CLL swollen nodes. We've got about 500 nodes spread through our body, which doesn't help when any of them can become swollen. Your experiences show the importance of bringing swollen nodes that don't go down to the attention of our medical team.
Neil
Hi Artygolf,
I think you should talk to your doctor about your concerns with these nodes.
I was diagnosed when they found multiple, bulky nodes in my abdomen and pelvis.
Even though, my blood work was not bad enough to treat I started treatment immediately after biopsies and scans. The reason was that some of my nodes were huge, the biggest 16-18cm.
I hope that, talking about it with your doctor will help alleviate your worries.
Dana
I was ib hospital unrelated to CLL in January/February - I had apparently had a silent heart attack. They did a CT scan with contrast medium. A short while later a very young newly qualified doctor came to see me. "There were serious concerns" about the number of enlarged lymph nodes throughout my lungs. It was clear from her general demeanour that she had been sent to practice giving bad news to patients. She asked how many cigarettes a day I smoked. I told her I had never smoked and no-one in my house smoked. She went away and came back 20 minutes later to tell me that I had "large lymph nodes" in left axilla (thankfully I knew what that meant - underarm lymph nodes. And then she said that there was "abnormal tissue" is my left breast, and they were going to send me by ambulance to hospital about 15 miles away for a mammogram, and asked about family history of breast cancer. Clearly the cardiology dept thought I was riddled with cancer. I explained that I had had to cancel annual mammogram because I was in hospital. I had had benign lumpectomy 17 years ago, and they were seeing scar tissue. I had mammogram within days of discharge, at the place I normally have them. No problem with it, just the same as previous one. And the Christie did the same sort of scan as I had had, and that that scan was no different from the one 2 years ago. Sorry this is turning into an essay. There are a lot of reasons for raised CA125 as well. So I wouldn't worry too much, but I would discuss these nodes and the CA125 with a sensible doctor. Ideally your haematologist. When I was in hospital I asked for all scan reports etc to be forwarded to my team at The Christie, and they brought my appointment forward and reassured me. Take care, keep safe - lymph nodes are hellish aren't they 
"Boo"b's 
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