Hi all,
I’m on watch and wait CLL and have not had any symptoms except now I can see an enlarged lymph node in my neck.
I’ve not told my oncologist but is it something that I need to worry about ?
I generally feel quite ok and do not really want waste anyone’s time.
Can someone please advise ?
this site is so useful for me. So many people give so much help and assurances.
Ps I’m 55 male in the UK
Definitely let ur hematologist know. They will feel it, check size to compare, possibly order scans to see if any formed inside and physically check u if u have any others. I had one pop up 3 weeks ago. I am in remission 5 years. Getting CT scans next week. Hematologist didn't feel any others. When I was on W&W after 12 years, my blood work showed I was ready for treatment, I had several large nodes especially on my neck. Got BMB and 2 second opinions before I began treatment.
When was ur last blood test? First thing hematologist asked me last week was do I have an infection. Nodes can pop up when fighting something. I didn't.
Hopefully your node means nothing but you should always let your doctor know about any changes. 🙏💕
My husband started with a lump in his neck that got bigger within a week or so. Labs came back perfect. He had the lump biopsied and was found to have stage 4 CLL/SLL. Do not wait tell your oncologist. Praying you get much better news. But do not fear, there is a full arsenal of weapons today. My husband was stage 4 in 2008 and is still here fighting the battle in 2023. God is good !!!
thank you. I think I better let my oncologist know. My bloods came back perfect 3 weeks ago and I have had no infection. It’s been about 2 months since I noticed the node.
It's normal to notice enlarging lymph nodes with CLL but it's always better to let your doctor know, especially if they get bigger quite quickly. They are usually just full of CLL cells but better to be safe. If your bloods were normal 3 weeks it's almost certain it's nothing to worry about but let your doctor know.
Hi Pav545, I am also in watch and wait, got three lymph nodes in neck last half year, still present, bloodwork was also stable. But I am fighting last half year all kind of infections. The hematologist did not take any action. But maybe they act different on CLL patients who are in W&W in the Netherlands.
Definitely let your oncologist know. I feel very well but noticed a lump in my neck. I let my CNS know, it was monitored, PET scan done and I'm now on Venetoclax and Rituximab. I still feel fine and my bloods are normal but scan showed lymph glands enlarging.
You should definitely see your oncologist. Don’t delay!
Three years ago I got a pneumonia vaccine booster injection in my left shoulder and the next morning awoke with a mass the size of a squashed golf ball in my armpit. It turned out to be CLL/SLL, and specifically SLL. I had surgery, radiation treatments and Rituxan infusions. My blood work is normal. Now, I have 3 small but enlarged lymph nodes in my neck area. I had a PET/CT scan in November which did not show anything. If they increase in size, my oncologist may want to have them biopsied.
Good luck!
Just as a follow up, the enlarged lymph node in my neck increased in size from 1.5 cm in February to 2.8 cm in May. My excellent oncologist John Allan, MD, at Weill Cornell Medical Center in NYC, was concerned and recommended that the node be biopsied. It was excised on May 31st and was diagnosed as SLL. My blood is normal. Following the diagnosis he recommended no treatment as I have no symptoms such as fatigue, weight loss or night sweats. Just watch and wait. My next appointment is in October. I will probably undergo a PET/CT scan in 1 - 2 years.
Hi. I agree with the others. Useful to let your haematologist know so that they are aware. They rely on us to inform them if we notice that kind of thing, and then it helps them to gauge when something might be changing. Good luck!
For your peace of mind tell your oncologist. I have multiple enlarged lymph nodes in my neck. They feel huge to me but the oncologist was not worried about them. I was on W&W for 6 years. I am starting treatment 4/3/23 more for anemia. Good Luck!
Aww thanks Wendy
You may be in the SLL group (like me). My labs were normal but my lymph nodes were enlarging. In the SLL "flavor" of this disease, the cancer stays in the lymph nodes for awhile. I was diagnosed in 2015 (age 53) with SLL, progressed to CLL (showing up in my labs - cancer "over flowed" the lymph nodes into the blood) in 2016, and started treatment in 2017. You should mention it to your doctor but usually in our disease CLL/SLL, there is not an immediate concern if your labs are showing normal. It just might mean you are slowly progressing toward treatment. The nodes in my abdomen were as big as a grapefruit but my labs were only slightly elevated - so that is how different SLL and CLL can be, and only a CT scan would show that. Best to you.
On the other side of the coin. A swollen lymph node won't cramp your lifestyle. If that's the worst symptom you have. But the disease is telling you, I am here. Just a nice friendly reminder from your CLL/SLL friend.All the feedback you have gotten is quite valuable. The question now is, how large will the lymph nodes get? What else may balloon up next? Spleen?
For me, lymph nodes swelling was a nothing burger. But then my spleen started growing fast. Pressing against everything and hanging below rib cage protection.
If you do not have any left rib cage discomfort at all. That buys you time.
All the best!
Had night sweats bad back in 2008. Had blood worked done and everything looked good. About 3 weeks later I had a lump on my neck, had it removed. Thinking that this is no big deal and my surgeon said for me to come in for the results and to my amazement I had cll stage 4. No time to wait then my surgeon put in a port and started treatment immediately. Still being treated today. Do not hesitate to have it checked out. Maybe it is nothing and it will b a great blessing
I forgot to add in my reply let us know how you make out.
FYI My husband’s labs were perfect and he had stage 4 SLL. I would get to the doctor if I were you, please!!
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