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Original poster

What is this swelling above my collar bone.

356 replies

MegGriffin · 05/08/2016 19:25

I have had it over 3 months and have booked doctors for next Friday. It is above my right collarbone, the swelling is soft and inside it is a movable long thin lump. It does not hurt at all and I haven't had any infections or bites etc. It does not bother me except it hasn't always been there so o worry about things like lymphoma. I know that apparently cancer lumps are usually hard and immobile so it's probably a lymph node....Has anyone had anything like this at all or any doctors with ideas please? I keep swinging between thinking I'm over reacting and then thinking I should rush to the doctors. In case you can't notice it, it's on the left in the picture but actually on my right. The redness is my terrible British tan Blush

What is this swelling above my collar bone.
OP posts:
Parisinthe30s · 24/04/2019 18:11

I have the same type of swelling on both sides. I can't tell if it's just fat or lymph nodes. I had a molar extracted a few days ago and it was infected, I'm on antibiotics (clindamycin); so I'm real worried

Sweetcheeks832 · 02/05/2019 00:56

I thought I posted, but guess not. Check out thoracic outlet syndrome. This is not the same as a swollen lymph node. Check Google images on both and there's a visual difference. I have meg griffens and on the right side. My symptoms are: pressure or annoyance of something in that area.
My arm feels heavy. Shoulder feels tender especially if pressure bound like a purse or heavy bag. Some numbness in rt hand. That hand a little colder. That hand a little redder than than the left. My grasp has suffered. Stiff and sore neck sometimes. Sometimes tingling in the neck and rt side of face (when im really impinged). Obviously, soft swelling, no knot. Feels like freestanding fluid.

CBC, vitamin load, pancreas,liver, heart,kidney, thyroid and female hormones are fine. Lymphocytes and inflammation normal. Diagnosed with pernicious anemia 2017. B12 was 98. Vit d was 17, iron was 8. Pretty sick. That's when I noticed this. Now all bloodwork is normal, still have it. It had taken a good 2 years to get back my neurological function. I am 100% sure this is thoracic syndrome on me. And as always having a d cup or larger, it's not really a shock. Plus I'm about 30 pounds over weight and that Is a contributor as well. (THANKS AGAIN, PA). Anyway, my doctor has felt it many times and isn't worried because there is no substance. He can feel my lymph nodes there under the skin and they are not inflamed. It's just the fluid that's pocketed there. So that only leaves blood and nerves, etc.. anyway, check it out.

Worriedmummm · 25/06/2019 16:42

Can anyone help me???

Worriedmummm · 25/06/2019 16:49

I have enlarged blood cells (due to anemia by GP) I have fatty lumps above my collar bone plus now after falling on concrete a few weeks ago I now have a long lump on my knee cap that hurts when kneeling what is happening to me??? I’m scared :(((

klanj68 · 28/06/2019 10:20

@MegGriffin and @emmas0314 I have these too! @emmas0314, you are saying "they" do you also have the lump on both the left and right side? My doc has ordered an ultrasound, I am going to get tomorrow. Hopefully it's nothing serious. I have on both left and right side. The lump on my right side is bigger though.

Tgirl25 · 03/07/2019 07:47

I have swelling left side above collar bone for 5 days
This morning I have another swelling appear below the same collar bone
Any ideas???

Mkane224 · 16/08/2019 20:17

I’m so glad I found this post. I have the same swelling above my collar bone on both sides of my body. I can’t believe all of us that have this issue have not gotten any answers about what it is! I’ve also had facial swelling but no other symptoms. I’ve had many blood tests done and the only thing that was abnormal was larger red blood cells that required another set of blood tests for B12 and folic acid. I’m waiting for the results now and going in for a CT scan next week. The 2 Dr’s I’ve seen are stumped as to what it is. I’ve gained 30 pounds in the past year too which is a lot and I’ve been in menopause for 4 years. My thyroid is fine too. I live in Phoenix AZ USA and they tested me for Valley Fever which was negative. I’m not having difficulty breathing and haven’t had night sweats or fever. If my CT scan is clear I’m going to a naturopath. I’ll keep everyone posted on my progress, I’m grateful I’m not alone!

Rob0615 · 31/08/2019 01:05

I have the same thing swelling above collar bone its soft however been scared to see dr

Controlledchaos · 02/09/2019 19:37

So.. not a mom, but here's my story. I have a large soft lump over my left collarbone. Had blood work and an ultrasound close to a year ago. Doc dismissed it as a lipoma. In the last few months I have had intermittent pain in left collarbone. Just in the last cpl weeks an equally large one developed on my right collarbone. I now have near constant pain all along both collarbones into shoulders. Difficulty sleeping because of pain in certain positions. Trying to contact the doc for a week to no avail. Any thoughts?

Mkane224 · 03/09/2019 13:51

I just switched Dr’s and am being seen at The Mayo Clinic, I got tested for Cushing’s Syndrome Friday the initial blood tests didn’t indicate that syndrome, however, I did a 24 hour urinalysis and that test is more accurate so I’m awaiting the results from that test today. I’m also scheduled for an ultrasound next week. I’ll keep everyone posted.

Controlledchaos · 10/09/2019 20:57

Any news Mkane? It seems like everyone goes for tests, but then they aren't posting results. Is the news all bad? Anyone getting good news? I see a surgeon tomorrow for a consult. I really need some answers soon.

Brinaboo08 · 11/09/2019 22:22

I agree with you at @Controlledchaos. I've been having the same issue. I've been to doctor but they say it's normal. I'm waiting on the update of the others as well.

Controlledchaos · 12/09/2019 22:25

Ok @Brinaboo08 . I saw another surgeon yesterday. He wants me to go for an MRI. Hoping the insurance will pay for this one, and that it can be done soon. I'll keep everyone posted.

Kmakirsten · 16/09/2019 20:58

Thank you for sharing MegGriffin! This is very helpful. My father has the same swelling as you do. He also was checked by the doctor with no luck for a reason/answer. I am a massage therapist who specializes in Lymphatic Drainage Massage. We noticed that after a Manual Lymphatic Drainage Massage session the size of his lump decreased significantly. It is still there but very much smaller. Maybe that is something you can look into for yourself as an option as well.

kamal0207 · 29/09/2019 05:34

hi dear

I have same swelling on both side of my neck. Doctor said it is due to heavy stuff lifting sometime they said it is due to infections. I dont know wat is dis . Do you have any idea why this appear

Controlledchaos · 01/10/2019 00:25

I finally got MRI's scheduled for Wednesday. Nothing more to report.

Brinaboo08 · 01/10/2019 04:42

@Controlledchaos yay. That's a start. Thank you for keeping us updated.

Controlledchaos · 02/10/2019 22:52

So I had the MRI this morning. The surgeon has the report, but will not give me results without first obtaining a copy of the disc to review. He is also now setting up a biopsy for next week. Not feeling very good about things so far.

Missdemix · 03/10/2019 09:45

@Controlledchaos I am experiencing exactly the same! But my right collarbone area.... pain there and going into shoulder. I can feel a large lymph node above collarbone. No Infection/illness at all. Has been going on for 2 weeks, it’s starting to worry me now/. Pls pls update me with what your results show. I hope all ends up OK for you!

kpsra · 05/10/2019 00:51

Wow I have lots I could say but It would take a long time. I have had this problem to the best of my recollection since the late 80s..I too have been worried about what it is...of coarse lymphoma always is the thought..I have done extensive research and still have no idea ..have only found a few similar pics and actually had another forum I was on years ago with others that have this similar issue. Mine is on both side..the right side is larger on mine...I have also gone thru all the different possibilities as the what it could be and have had similiar issues with doctors some just looking....and a few thinking it might be something (like an autoimmune disease) but they do nothing. Appx 3 or 4 years ago I went for an annual physical with a new doctor and finally just pushed the issue as what is could be...she actually took an interest ..even go out a camera and took a picture to send off to another doctor...and....ordered an ultrasound! if correct this has been like 25years since I first noticed it! well all came back clear but I told her there was definitely no swollen glands ever..she said it all appears normal so I decide just to move on. Until early this year I had some other non related issues and brought it up to a PA who I was seeing...she too took interest and had me checked for lymphoma and blood cancers..again all good! but still no idea and no one can answer what it even might be! To add to this I have been having neck and shoulder pain so they did a cervical spine MRI and again I thought they might find some issue in the soft tissue...again they didnt say anything so I assume nothing (except I did have a slipped disk in C5-C6. SO what this is? I still domt know but I do know that they dont seem to be very concerned when it is soft, mushy and movable. I will continue the quest...but know we arent alone. If I can help anyone let me know because I researched and found a lot of stuff.

Controlledchaos · 17/10/2019 23:00

So I had surgery last Friday. The doc took 2x4 cjs from the larger lump over my left collarbone. He also removed a lipoma from my right forearm,as well as a piece of my left ear whichever concerned him the most. I am still awaiting results of the 3 biopsies. Today I noticed it seemed again like both sides were pretty swollen while I was active, whereas they seem less obvious in the morning after sleep. This doesn't make sense to me. Almost like it's swelling, but the MRI and the surgery each showed there was fatty tissue of sorts. 🤔 I'll keep u all posted.

Controlledchaos · 17/10/2019 23:01

2x4 centimeters it should have said. Sorry.

Kgraves · 25/10/2019 04:44

Has anyone got any answers to what this could be? I'm 48 yrs old and noticed it a few months ago. It's mainly the left side but right side a little. Mine is bigger then the swelling in the picture. It's more obvious if I move my head or to the right or my arms back. But it's very obvious it's there. It's just big, soft and squishy. I have gained some weight but feel like if it was fat is should be on both sides. I saw my doctor and am getting an ultrasound next week. I'm terrified that its something bad. Googling doesn't help! Does anyone have the swelling and its bigger then the one in the pic? I've been worrying about this constantly. Any comment is appreciated! Thanks

Kgraves · 27/10/2019 05:40

Mine is mainly on the left side too. Mine is bigger then the picture. How big is yours and is it constant? If its fat it's weird that it's bigger on 1 side. My right side is only noticeable when I move certain ways. Left side is always noticeable

Controlledchaos · 27/10/2019 22:29

So the doc says what he removed was benign. That’s all I know for now. I was having swelling and pain in all my lymphatic regions. Had suspected Lymphoma. Took lots of herbs and that issue seems to be improving. Not sure if it’s even related. Pain in my collar bones is occasional, but seems maybe less than before.