I'm back to whine about clavicle lump

[Blueberrytoast]

I have another account here called Hollywollydoodle, depending on which device I log in with, sorry. The good news now is that my next appt with hema/onca is in only two weeks, although at last visit he was not at all concerned about this lump above my left clavicle, up against my neck. I first noticed it in mid-June, but it wasn't painful. It's like if you sliced a boiled egg in half, lengthwise, but softer. The hema/onca's nurse looked at it, and brought him in to look at it, but he wasn't concerned - he just said hmm, see you in 3 months. My pcp was concerned, though, and sent me to have an ultra-sound of it. That was exasperating because the u/s tech acted like she couldn't see it, and the report said nothing was there, and hadn't even measured lymph nodes.

Anyway, it has started occasionally radiating pain, as if pressing against nerves. The pain shoots down, and also in toward my neck. I don't know if it's above a swollen node, or could it be a cyst?

This time when I see hema/onca, I hope he will be able to tell me what it is, and if it's related to CLL. I'm also curious how he would know if my liver and/or spleen are enlarged or not, if they've never been checked. Would an MRI show lymph nodes, spleen, liver? I could get a free MRI through my employee benefits.

Like my title said, I'm just here to whine about it. It's been hurting more often lately, and hurting right now. I'll search to see if anyone else has experienced this.

[Sepsur]

I had numerous lymph nodes all over my neck, under my jowl, back of my neck like little horns, under my arms, down the inside of my arms, around my diaphragm, groin etc etc - medical team always noted and treated them seriously - I even had biopsies taken from under chin - hope you get more certain advice from your team.

[akirsch973]

Hello

I had a similar situation. In Aug. 2022, my GP noticed a small 1.5 cm node in the subclavicular area near my neck. I saw my oncologist in Feb and he noted it but wanted to watch it. It was noted on a MRI/CT scan in Nov. Between Feb and May, it almost doubled in size to 2.8 cm and rose to above the skin surface protruding somewhat. It became uncomfortable especially when driving as the seatbelt strapped directly over the node. It was also uncomfortable trying to sleep on the side. In May the oncologist recommended that it be removed which was done. The diagnosis was SLL, the same as a larger lymph node removed from my armpit in 2020 that measured 6.3 cm. No symptoms and my blood is normal so no treatment at this time.

Good luck!

[DoriZett]

Sending you support Blueberrytoast. I presented as an SLLer first (eventually CLL as well) and my lymph nodes were tender and painful and ached - even though we are told by the docs that they don't hurt. We are all so different. Leading up to treatment, I had large lymph nodes under my chin and the sides of my neck (palpable axillary (armpit) and groin nodes as well). I call this my "Jabba The Hutt" period because it looked like I had no neck at all. The CLL specialists were fine with those nodes at that size until the lymph nodes in my abdomen became grapefruit sized. That, and my debilitating fatigue finally brought 3 CLL specialists into agreement, it was time to treat. Wishing you the best in getting answers to your questions.