Swelling by my collarbone

Hello CLL friends,

I noticed yesterday swelling on both sides of my lower neck and just above my collarbone. It wasn't visible in the mirror yesterday, but today you can even see in the mirror the swelling. It doesn't hurt at all. I was diagnosed 2-2016 with Stage 2 W&W. I'm going to call my oncologist Monday for them to check this. Has anyone had this type of swelling and if so what did you doctor suggest to treat this? I have to say I'm a little scared.

Michelle

20 Replies

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  • Hi Michelle, I have small swelling (couple spots) on my collar bone. Been there since April 2015 and was told by Physician Assistant at OSU they are enlarged lymph nodes.

    I have small nodes all over the neck area. People don't see them, but I think they will begin to show over time. They were also seen by CT scan at NIH last September 2016.

    I have no enlargement of spleen yet, which I suspect is the reason you are stage 2. If I am correct the one on your collar bone is also an enlarged lymph node. Maybe it was there and now you are noticing it because it got bigger? How big is it? Regards Tom

  • Hi Tom, sorry you have CLL also, but sounds like you doing good. Yes they said my liver is slightly enlarged and I do have swollen lymph nodes that is why stage 2. My collarbone swelling is quite a bit. Unlike the nodes I can feel that are probably dime sizes. This is probably an inch wide by several inches long. Not like I can feel a node. Weird. I will call doc Monday morning.

    Michelle

  • I was thinking something... Not sure if anyone can say what am about to say but this is my observation. Whenever I keep touching my lymph nodes with my fingers they seem to feel as though they are growing. Then next day or day after things go back a little. This watch and wait really plays with your head!

  • They also seem to get larger just before a doctor's visit, then afterwards they go down as I relax!

  • I was Dx'd in March and on W&W as well. I've recently noticed similar swelling. My understanding is that this is a common site for lymph nodes to be felt. If they aren't visible, they probably are still pretty small. By all means check with your doctor for verification since you are concerned, but from what I know, this is just part of the course of CLL for many of us, and lymph nodes which grow, but not quickly, are generally not treated unless they become unsightly, painful, or obstructive. I hope that yours are none of the above, and the doctor confirms that they are nothing of urgent concern. hugs!

  • Thank you!

  • There was a recent discussion about swollen nodes. You might be interested in my reply:

    healthunlocked.com/cllsuppo...

  • Thank you! Sounds like you've been through a lot and are doing good now. When you said some nodes looked like balloons all together i'm wondering if that's what my swelling is. Will call on Monday. I love your attitude!

    Blessings,

    Michelle

  • I have the same and was told by CLL specialist that it is common and should not be of concern. Mine are a swollen soft mass and sometimes looks like bruising. It doesn't hurt at all. I hope yours end up nothing more serious.

  • Thank you!

  • Michelle,

    This is likely from supraclavicular (above the collar bone) lymph nodes and by themselves they don't usually mean much other than your CLL may be growing. Common spot for nodes.

    Stay strong

    Brian

    CLLSociety.org

  • Thank you Dr. Koffman for reply.

  • Thank you!

  • Hi Michelle,

    Observable symptoms vary by person. When I was first diagnosed in June 2012 I had some swelling of nodes in the neck area a result of which I snored quite badly when asleep. Treatment (FCR) resulted in that swelling going, within about a month and no more snoring. I now find myself coming out of remission and this time no obvious swelling of neck, however I do have swollen nodes just above the collar bone, but only on my left side. That swelling seems to fluctuate from day to day, and in particular seems to be larger if I am very tired (had a couple of late nights, gone midnight this week and it looked big at the end of the second one, yet now smaller again. At first I thought it was an optical illusion due to tiredness but now, on reflection I do not think so.

    rob

  • I have been on W&W since 2007 and I just notice that my right side is swollen above by collarbone . I am in sage 2. I will be seeing my oncologist in two weeks for regular appt. and will show her it. I read about the nodes along side the collarbone and I thought that this is what this is. Thank you for sharing, it is good to know that this is part of cll and not something else.

  • Dx August 2012, W&W, but have had CLL for a while before that. About June of this year I noticed lymph nodes beginning to swell on back left side of neck. Sometimes they hurt, right now no. I can feel very small ones on right side. I also have one that moves around, swells and goes down beneath my right clavicle. This is the one I noticed first. With CT scans I do have them all over. This will be the case as yours progresses most likely, Michelle. This is a strange disease, but if you have to get leukemia, I guess this is the best one to get. I make calls to my oncologist from time to time when something new comes up. Call you doctor tomorrow to ease your mind. My best. Carole

  • Thank you Carole. It's also hard to tell if tiredness is due to CLL or other.

  • Absolutely, Michelle. I think I get tired earlier in the evening than I used to. Don't know if it's due to age or CLL. Never know what changes in the body are CLL or something else. This disease keeps you on your toes.

  • Good morning,

    I went to my oncologist yesterday and found out this is my CLL smoldering-ha. Just like you have said. Well, a smoldering fire can be put out! No treatment as of yet! I go every 3 months for blood work and doctor check. This is what I wanted to W & Live! I know there are good and advancing treatments for CLL and I am so thankful for this site and the hope and comfort you all give.

    Everyone of you are in my prayers

    Michelle

  • Michelle; you truly have found the right forum. We're all in this together. My best. Carole

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