A couple months ago, I discovered a lump on my left clavicle, against the side of my neck. It feels mashable? and sort of fits in the palm of my cupped hand, and doesn't hurt. It's visible in the mirror. I pointed it out to my hematologist (who I see for CLL) at my visit a couple weeks ago, and he said, "Hmm... see you in October." ERGH. I guess he wasn't concerned because I didn't have other symptoms like weight loss, night sweats, fevers. I have had those sometimes, but not excessively. Last week, when I saw my regular doctor, and showed her the lump, she immediately booked me for an ultrasound, Thank You! which I had two days ago. I feel like it's probably just a lipoma, fat? or cyst? but I'm also wondering if it's caused by the CLL. I've also been having a recurring fever and more night sweats, but feel like I'm fighting a cold like everyone else at the office. I am tired all the time, have been dealing with anemia for years. I'm here to keep waiting & whining... wondering what your symptoms were like before the dr decided to start treatment for CLL? And did you start feeling a lot better with treatment?
Collarbone lump: A couple months ago, I... - CLL Support
Collarbone lump
My guess is that it is a lymph node and that's why your CLL doctor wasn't concerned. We have hundreds of lymphnodes around our body and it is likely they will all become enlarged as a result of your CLL. I had so many of them visible and palpable before I started treatment, it's part of the disease I'm afraid. The ultrasound won't give you a lot of info, they will probably find out it's a lymphnode and tell you the size.
The only way to confirm it's CLL (if it is a lymphnode) is to have a biopsy, it doesn't hurt. I don't think your CLL doc would need you to go through that unless there are other worrying symptoms. I think your GP is perhaps a bit more alarmed as GPs do not know much about CLL and tend to panic sometimes when not needed and act slow sometimes when they should be more proactive. That's why it is important to have a CLL specialist, if your CLL specialist is not worried, it is a good sign and you should not worry either.
Thank you, Poodle. I think you're right! I've been here for hours now, reading other people's experiences, and your answer makes perfect sense. Unfortunately there are apparently no CLL specialists in Oklahoma? but my hematologist is at a cancer specialist/research institute. I need to trust him, and be less eager for treatment to start. I wanted him to say OH NO LET'S START TREATMENT NOW, so I could tell my director at work, and get some kind of vacation/sympathy out of it. I completely judge myself for this, btw. 
On that point ... I would consider starting to look for a CLL specialist relationship as a second resource to your primary hematologist who sounds like you have a good relationship with. When it comes time for treatment decisions, it will be helpful to have expertise available at least by phone/telecon, and establishing that relationship takes a little time.
I signed on with my CLL specialist a year into W&W, and when symptoms development indicated treatment, my CLL specialist and my primary hematologist worked well together. I ended up in a clinical trial my hematologist would not have proposed, and it's been the right course for me.
I note MD Anderson in Houston is among the best in the world at this, and while it's not a trivial drive, it's at least one you could make if you had to.
I don't really have a great relationship with my hema. He is expressionless, and seems bored. But I figure he's seen it all, and smart doctors don't always have good bedside manner. I would really like to see a CLL specialist, though. And I'm always up for a road trip. 
Have 3 or 4 movable lumps on jaw and collarbone, up and down on a regular basis
Ugh. This one has seemed to get smaller then bigger. Wondering if it will go away. Wondering if another one will appear. Can you tell if something triggers your lumps? I work closely with people out the community, so I feel like I'm always fighting some illness, or allergies. Do they check your lumps with u/s?
There doesn't seem to be any particular trigger, more annoying than anything.
I agree with Poodle2 about lymph node except for your other signs-- night sweats, recurrent fevers, etc. Those (maybe in place of lymph node) would seem to me something your CLL doc would want to know more about.
Yeh. I haven't had them very much, though. I told him I do have them occasionally, and then this weekend was bad. I need to start documenting so I can remember how often.
Hi hollywollydoodle,
-
This reply to a similar question yesterday may be useful for you to learn how some CLL experts decide when treatment is needed: healthunlocked.com/cllsuppo...
-
IMO- many CLL experts look at the entire patient, symptoms, blood tests, how many enlarged lymph nodes, spleen size and they weigh all those factors before starting treatment. (e.g. : First, do no harm- en.wikipedia.org/wiki/Primu... )
-
Len
Thank you, Len! I've just been telling all of this to my best friend, explaining more about CLL to her, and questioning why I "want" it to get worse?? It's like waiting for the other shoe to drop, right? Instead, I need to want to WANT to be as healthy as I can be! So I just got inspired to get dressed and go for a little walk, then take a cool bubble bath, clean house, and prepare a good meal - I've been enjoying my subscription to HelloFresh. I'm going to text my friend a picture of me doing each of these things. Also probably might stay off the internet awhile. I followed the link you shared, and hers (sorry already forgot her name) was one that I read a few hours ago. Thank you! You all are wonderfully knowledgeable and supportive. I liked someone else's advice here somewhere - he? said Trust your doctor, and have a beer. lol, something like that.
Holly
Hi Holly,
This reminded me of the experience I had with my stubborn collarbone lump that persisted long after all the others had beautifully melted away with treatment (Ibrutinib & Venetoclax). I couldn’t stop feeling it and eventually my specialist had an ultrasound done to see why it was persisting. The radiographer was unconcerned and said he was sure it wasn’t an enlarged lymph node but more likely one of those unexplained fatty lumps that pop up in places. Interestingly however, it’s melted away now but it had me pretty worried for a while.
It’s so easy to fixate on issues with CLL but I firmly believe we know when time is approaching for treatment and it certainly doesn’t sound any time soon in your case. The ‘constitutional’ symptoms as they call them like fatigue can persist for years and even be due to anxiety itself but your lab results will show up any worrying changes in your haemoglobin levels etc. so don’t worry. Little lumps and bumps are part of the CLL terrain and your specialist won’t get excited about them unless they start getting massive or impeding a major organ! GP’s get much more concerned and I can remember mine looking very alarmed when my neck and face started to look like a bag of nuts. He actually said, ‘that’s awful, what will they do for you?’ I described the treatments to him 😊
Keep yourself busy, be guided by your haematologist and certainly don’t fear treatment should you ever need it.
Best wishes,
Newdawn
Thank you, Newdawn. That's very good advice for me. Lol about your face looking like a bag of nuts.
My GP became very excited when she saw my absolute lymphocyte count of 89k (?). She sent an urgent note to my CLL specialist who had me come in so he could explain that if he’s not worried about my current blood count numbers, I shouldn’t be worried. The time for me to be concerned is when he’s concerned.
I like to compare the general feeling of fatigue we get from having a diagnosis and beginning to experience some effect of hemoglobin declining to Braxton Hicks contractions. These contractions certainly get our attention the first time we’re pregnant. After giving birth, we know what real labor pains feel like and we no longer really even remember the Braxton Hicks contractions!
Shortly before I needed treatment, my fatigue changed. It was a fatigue brought on by exertion and lasted for days afterward. I usually do the dishes several times a day (my husband and daughter cook). In my deep fatigue days, I had to do the dishes in batches. I could set up coffee if my husband refilled the coffee maker with water.
After treatment, within a few weeks of starting the fatigue began to melt away. I waited until 6 weeks or so after treatment to begin getting back in shape again.
So for now, relax.
I love that analogy. I feel like I'm all over the place right now - some days fine, other days dragging. I need to be using my Planner and taking notes, otherwise I can't remember.
I too have exactly what you are describing and have had it now for over 2 years. My gp sent me for an ultrasound of my neck and I was told it was just my CLL nothing sinister. When I went to see my consultant he also sent me for an ultrasound and said I have these enlarged nodes in my abdomen too but he wasn’t worried. He recently discharged me and I just have 6 monthly outreach blood tests. If my blood results change he will see me again, that was as I said over 2 years ago and my bloods have stayed stable. So while I feel a little self conscious about the egg shaped lump in exactly the same place as you described nobody seems to notice it but me.
I hope to get a second u/s by CLL referral - wait til you read my update post.
When I mentioned how big my lymph nodes felt, when I first noticed them my hematologist at the time said, “well don’t touch them. Years later I am on V & O now and they have disappeared. I feel good for the most part. I was on W & W for 6 years.
I know!
HiI had exactly the same thing. Had 2 on collarbone that you could move. Doc said enlarged lymphs, which I had in groin, armpits, neck
Started v and o treatment 3 weeks ago as wbc became aggressive, and they've all gone done down a bit. So its defo the cll imo.
Hope that helps
Matt
So last November I went to the doctor with a lump under my chin. she had a prod at my guts and started writing referral request with URGENT on them. Blood test next day Friday and seen by consultant in Maxillofacial the Wednesday week after. Got a diagnosis "CLL, nothing to be concerned about". First consultation with Haematology the week after, I was told "you have avoided all the uncertainty of W&W and are ready for treatment".
I started on V+O week before Easter. By the end of week 3 all the soft lumps had gone but there was still a harder lump under my chin. Had a CT scan end of 3rd week and lumps in abdomen that I couldn't feel were still big enough for me to be high risk TLS, started V in hospital. End of 1st week cycle 2 after 4th IV of O and 50mg V the lump under my chin was still there, felt like a peach pit. Asked the doctor about Manual lymphatic drainage (specialised massage), she said leave it a bit. By end of next week on 100mg V it had gone. I've never been able to feel the 14x1cm frankenfurter in my abdomen but I don't feel discomfort any more after eating a main meal. That could have been my spleen but no one has mentioned my spleen's involvement. Now in cycle 5, they have mentioned another CT scan in cycle 6. I'm hoping I tick enough boxes for PR at start of cycle 7 but feel a BM biopsy can wait until completion of V next year.
uptodate.com/contents/image...!
Oh boy, you've been through it! I'm learning a lot from you veterans.
I had lymph nodes pop up all over and got very big before I elected to start treatment. My hemotologist told me that I would know when to start because they would start to feel uncomfortable. He might have started earlier but I said they didn't bother me (must admit I was afraid to start treatment). Finally, they became uncomfortable and I began treatment.
Interesting how it's like an endurance test before starting treatment.
I had a lipoma in that same spot for about 8 years. It kept getting bigger while I was on V&O treatment. I waited until treatment was finished and my platelet count was back to normal before having it surgically removed last month. They said it is unrelated to CLL, but I’m not sure. Before the lipoma appeared, I had enlarged lymph nodes along that collarbone. I also got a tattoo on that shoulder shortly before the lipoma appeared. It may all be unrelated but it seems weird to me. I pointed out the lipoma to every doctor I saw and no one was concerned about it. I only got it removed because it was getting so big. It was 8x6x3 cm. If I didn’t remove it, I was going to have to name it Lumpy Larry. Hope yours turns out to be a harmless lipoma too
LOL! I ALSO NAMED MINE LARRY the other day! When I was talking with my friend, I decided this lump needed a name, as it seemed to be sticking around for awhile.
Hey Hollywood
I've had that same lump over my left clavicle and at the base of the neck. Mine is not directly below my chin, it is a few inches to the left. I'm five and a half years W&W, and at first it scared me a bit. My CLL Specialists (I go to two of them, one here locally in South Florida, and the one I consider my lead Specialist at Dana Farber in Boston) Both have seen it and felt it and were not concerned with it. In essence its a lymph node below soft and maybe fatty tissue, and it lifts up the skin more pronounced than other lymph nodes due to its location.
Still I'm glad they are doing an ultrasound to get a better look. Good luck.
Carl
I think the u/s was a joke. At least I'm no longer worried about it. Thanks!
Diagnosed 1/2011 and was on W&W for 7yrs. I have the exact same squishy lump on my collarbone. When I was on W&W I had many enlarged lymph nodes in my neck area. When I finally started ibrutinib the nodes went down very quickly but the squishy lump remained. I was so disappointed because it bothers me. When I asked my CLL specialist about it he told me it was fatty tissue ie lipoma. Bummer !!! God has a sense of humor... I get rid of the nodes and still have a lump in my neck area. I'm grateful I don't look like I have mumps anymore but wish the lipoma wasn't there either. Sounds like you might be ready to start treatment. I have been taking ibrutinib going on seven years now. Other than the joint pain I am doing great and my blood work had been in range for the past two years. Good luck with your potential treatment.
I'm looking forward to what Hema says in October, how I feel then, and if this lump is still there. The more I learn, the more questions I have.
My neck is full of swollen lymph glands. I would advise listening to the oncologist and not the GP. The glands seem to wax and wane during the days and weeks. Larger and sometimes smaller. Best of luck!
Yep... I think that's the lesson learned through this. If Hema isn't concerned, it's okay.
What you describe sounds like what I have. My CLL specialist said that enlarged lymph nodes are typically firm rather than soft. He ordered a CT scan which was inconclusive. He told me that he had only encountered this in one other patient (also female like me). That was 5+ years ago and I am still on W&W.
Yeh, that's what I keep seeing on Google, to be more concerned if it was firm. I also came across other women who have these mysterious lumps on collarbone, without CLL.
UPDATE.
Well, first a little whine about the u/s tech. It was a darkened room, but still. Other people have been able to see this lump from four feet away - and it can certainly be felt - but this u/s tech was like, "Where is it?" @@@ I still had faith in the u/s machine to pick up something, right? Well, no. It did not. My pcp sent me a msg Sunday evening saying the u/s was normal, "Is that area still swollen?" Yes, yes it is. She also sent the imaging report, which reads -
"High-resolution real-time gray scale echograms were obtained in the region of the cervical neck. The soft tissues are typical in echogenicity without identification of a cyst or solid mass. No free fluid or encapsulated fluid collection is present."
So... what is it? Fat? Nobody has said "Lipoma." I was disappointed that the u/s didn't look as far as my lymph nodes to measure their sizes. Maybe they did but didn't make it into the report. Whatever, my little lump named Larry is still here. My endo met him this morning, and pcp again this afternoon. Larry is a mystery, and pcp and I agreed to not pursue it any further. Wait and see (such tiresome words) what happens with Larry, and if another lump pops up somewhere.
I have entertained a theory that maybe this lump came about due to irritation from seatbelt - that's where seatbelt hits/rubs against me. I drive a bit for work, and company cars don't have the wrap-around cushy thing that i have in my car. It's a stretch, but you know how you - or some of us - develop moles where fabric rubs against our skin.
Anyway, I was wondering if it's time to start treating CLL - but after all the reading and learning, now I don't think that's going to be anytime soon. And I'm not dreading when that time comes - I look forward to it, like cleaning out my system!
The other concern, that I don't think I mentioned, was worrying if I had another cancer in my abdomen. My mom was diagnosed with CLL at age 71? And her doctor said it was "something she would die with, not from." About a year later though, they found that she had developed Multiple Myeloma, and that was aggressive and awful. Between it and the treatments for it, hard to watch her brilliant life fade away.
My mom and I shared health issues - type 1 diabetes, hypothyroidism, now CLL (although she's passed), so while I didn't have fear of CLL, I've worried about developing another cancer. I want all my doctors to be vigilant! I'm learning though that each specialist only wants to deal with their little piece of me. I'm the hub that has to track all the lab reports and communicate to other doctors. I like my pcp, who is quick to order tests. Everything comes back on her, then she refers me to a new specialist, and it's back to me again as the hub.
I'm rambling now, sorry. I don't know what all is going on in my body! I feel better today than I did over the weekend. I've got a list of things to keep track of. More labs were done today to check on stage of kidney disease, and I'm just going to relax.
Edited for typo
I would ask for it to be biopsied. I had a lump on my neck for 2 years. Two different doctors told me it was just a swollen lymph node from a cold. One even said it was not cancer. I finally went to an ENT and had a biopsy that turned out inconclusive. Second biopsy revealed stage 4 CLL. I am surprised that your cll doc isn’t concerned and I wish you the best.
Sounds very much like the conclusion they came to with me. It would be difficult to biopsy if they can’t actually locate it.
I can totally understand that your mum’s experience would make you hyper vigilant but it sounds like ‘Larry’ isn’t a sinister visitor just an unwelcome one that might drift away if you ignore him!
Best wishes,
Newdawn
Not what you're looking for?
You may also like...
Swelling by my collarbone
Found a lump 🤔
New lumps
Curious lumps
Cyst-like lump on chin
Sudden lump appeared
Forehead lump biopsy
New neck lump came on quickly
Is there anything that can be done if lumps in neck remain after 6 cycles of FCR treatment?
Bloated Belly, Lump on the left side of my abdomen..having a CT scan of the abdomen tomorrow
