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Topic: Collarbone pain

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Feb 24, 2013 08:35AM

kk12903 wrote:

I have been experiencing pain in collarbone, I'm not sure if is anything just curious if anyone else has had pain in collarbone. I do have an appointment with a Bs at the recommendation from my Gyno I have very dense tissue and have a lump had two ultrasound two mammo. One compressed .

Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 14, 2013 06:54PM mtks wrote:

Hi kk12903,

I too have collarbone pain. Feels bruised-like. It's the same side as my bc-left 3 yrs ago. My onco told me to forget about it but that is hard to do when it hurts. Just wondering if you are still experiencing the pain and if they found out why.? Thinking of you

age 53 at DX/ Onco score 17 Dx 8/31/2010, ILC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 17, 2013 09:02PM GmaFoley wrote:

Mine is from the radiation. I also have sternum and rib pain for 2 years now.

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Jul 17, 2013 10:53PM ballet12 wrote:

Good you are following up, KK.  My radiation oncology resident, whom I saw today, discusssed that pain or lumps in the sub and supraclavicular area (collarbone) need to be investigated right away.  Hopefully, it's not serious in your case.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Mar 17, 2015 11:16AM mtks wrote:

Hoping someone chimes in with some feedback. Still having pain with heat now. Pain is more frequent and hard to ignore. Dr. tells me to quit thinking about it

age 53 at DX/ Onco score 17 Dx 8/31/2010, ILC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 17, 2015 11:57AM GmaFoley wrote:

I got rid of my collarbone pain but it was a drastic move on my part. I only had a lumpectomy and radiation - I had large breasts (44G) I talked to a PS and found that the pain might go away if I had a breast reduction with reconstruction. It is now 3 months Post op and my neck, shoulder and collarbone is pain free. The nerve pain I had in the breast after radiation is also gone at this point. It was definitely a major surgery and I ended up with an open wound that had to heal from the inside out. But it was well worth getting rid of the pain.

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Jan 11, 2018 02:30AM arsh_10 wrote:

Hi All,

I am also experiencing collar bone pain which comes and goes sometimes I feel the pain is in my shoulder after my lumpectomy in right breast. Please help me know if someone else has experienced the same.

Regards,

Arsh

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Jan 11, 2018 08:31AM dtad wrote:

Hi there. There is something called costochondritis which could be causing your pain. It's inflammation of the ribs and sternum. It's not uncommon after breast cancer. Good luck and keep us losted

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 18, 2018 02:42AM 3dognitemama wrote:

Shalom, y'all! I agree that it has a good chance of being costochondrits; I developed costochondritis immediately following my pre-surgery bi-lat MRI. It was absolutely the most painful part of my dx & treatments. I had nightmares following that scan, & my PTSD, from an oral rape at gunpoint, from 38 yrs before, reimerged, so that I can no longer go to public spaces where open-carry owners frequent, such as our local farmers' market.

Even though I had only a lumpectomy, w/ 3 whole, 2 partial nodes removed in SNB, & hypo-fractionated RT, the costo has become wide-spread, & chronic, which, natch, has interfered greatly w/ therapies for axillary webbing syndrome, mild lymphedema, & the many deteriorating joint issues I've developed since starting tamoxifen. The combo of lymphedema & costo means that all these therapies must proceed extremely slowly.

During RT, I met another BC patient who volunteered to our daily "wait our turn" grp, that her MRI was also the most painful part of her experience, yet when I have tried to search out this aspect, every other website has stated that the breast MRI is painless! I've been wondering ever since, if that's really the norm. Would anyone else care to weigh in?


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Mar 18, 2018 10:21AM Moderators wrote:

3dognitemama, welcome to Breastcancer.org. We are terribly sorry to hear all you have been through, from your traumatic experience, to your breast cancer and costochondritis. Did you talk with your treatment team about the MRI, and costochondritis? What was their explanation?


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Mar 19, 2018 07:14PM 3dognitemama wrote:

The "treatment team" concept was not available in our network; I've mentioned this to every dr I've seen since then. The only one who commented on it was surg onc; she simply stated most women develop costo at some point after BC treatments. The only dr who offered me any pain management help was the ER dr the 1st time I had the costo "heart attack" scare. She prescribed flexeril & meloxicam.

Recently I've realized that tamoxifen exacerbates both the causes of flare-ups, the severity of spasms & pain, & duration of flares. I had to stay off tamoxifen for 3 mos to stop the night sweats prior to dermatology patch testing, to determine contact allergens, due to frequent dermatitis occurrences. The patches remain on your back for 5 days, during which they have to stay dry. During thsee 3 mos I also started PT. About 2.5 mos off of tamoxifen, my PTist said I was like a different patient. I began making rapid progress, to the point of his having to limit me, so I wouldn't injure myself. During these 3 mos, the costo flares began improving. In the 2 wks back on tamoxifen, it has now begun the flares, w/ any stretching to reach, that I attempt. I am also experiencing the excruciating muscle weakness & pain, which then affects joint mobility, as well as many other side effects. Even though I've been on a 20 mg dose, its actions have been very strong in my body. In the 2 yrs on tamoxifen, my bone density has improved back into the "osteopenia" category, a positive, but I've lost another 1 1/2 inches in heighth, while gaining 20 pounds; definitely not good.

I finally found the more specific risk assessment tool the med onc had said he would show me, but never actually managed to do. When I entered all my cancer info, compared w/ vs w/out tamoxifen, the risk shortened my life span by 1.1 yr; I've lost more time than that in these last 2 yrs, from degradation of quality of life! I have decided that I am going to take back as much quality of life as I can by stopping the tamoxifen. This decision gives me the first hope I've felt in these last 2 yrs that I might still have a chance for a more-normal quality of life.

I surely would, however, like to know how many others have had such negative experiences w/ MRI's. I tried to find a reporting site for negative effects from MRI's, never could find one.

Now, as much as possible, I'm eager to get on w/ life! I can live w/ "slow, but steady", even!
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Mar 19, 2018 07:43PM NotBrokenJustBent wrote:

I developed pain in my sternum 3 months after being on Femara. My MO asked if I had ever had an injury and then I remembered that as a very young girl I had a broken sternum but after it healed I never had any discomfort. Apparently these blockers will stir up any old injuries. I had never had any pain there is 40 years!

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Mar 19, 2018 07:50PM Falconer wrote:

3dog, I'm sorry to hear of your difficulties. You've been through so much. I'm sorry to hear of your PTSD and its return as a result of BC treatment.

While I'm not positive it's the cause of my relentless neck and shoulder pain, I had an MRI guided biopsy that could be responsible. I was told to hold in the same position for 90-100 minutes, with my arm above my head while lying flat on my stomach, my b cup boob kneaded into place. When I was finally allowed to release, my arm was numb and shaking. My neck was cramped. I'm sure rads and anti estrogen hasn't helped. MRI of spine shows a bit of arthritis. Bone scan clear. I see pain management Wednesday after EMG results. Tonight I cooked dinner for the family and now can hardly hold my head on my neck as it is so stiff and cramped, all because I chopped cauliflower and had to look down at the counter to do it?

3dog, you're not alone.
Strong is the new strong. Dx at 45. Onco 16. Monthly Lupron shots Nov. 2016-December 2017 Dx 7/2016, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 7/2016, DCIS, Left, 5cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 5/30/2017 Reconstruction (left): DIEP flap Surgery Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 21, 2018 12:15AM 3dognitemama wrote:

I know that there are many of us out there who have, are, & will continue going through so much pain, frustration, limited activities, debilitation, as a result of these treatments & their many complications. My sister-in-law also had a lumpectomy, went through rads, then was told to take an AI (can't recall which right now). She is a supervisor in an occupation that requires her to be on her feet, moving from area to area. She has told me that when she gets home, she uses a wheeled stool to move around her home, because she cannot bear to be on her feet any longer, & often, if no other family member is there, she cries as she moves around, trying to function through the pain. This decision I've made to stop the tamoxifen has made me feel like I've found the way out of a prison of torture. I am so grateful to my dermatologist for wanting me to do the patch testing! When I first began tamoxifen post rads, & very quickly developed hip pain for the 1st time in my life, I went to a rheumatologist, to see if there were any pain meds he could recommend to get me through the 5 yrs. His recommendation, "Stop taking the medication; I would never want a patient to use a medication that is going to do so much damage." I thought he just didn't understand; now, I realize, he was absolutely right!

I hope that you can at some point, find therapy(ies) to help restore your mobility, strength, & lessen your pain. Do you have other family members that can, do help you? I certainly hope you do. My spouse, who is almost certainly undiagnosed Aspberger's, has gone from telling me he didn't really see what the big deal is when I was so emotional after my dx ph call, (since it was just a small tumor, good prognosis), thru realizing just how unsupportive emotionally & physically he'd been in our marriage, & stating he wanted to try to do better, to learning how to do so much more around the house than he'd ever imagined, running errands, & sometimes taking me to drs appts; this has been a big emotional-learning experience for him! He still often forgets, & verbally negates my pain on my days when I am unable to stand, move, like someone our age should, but now, at least on some days, his lightbulb clicks on & he jumps in to action to help. He has even learned to know when it's Mom's Day & my B-day, to give me cards &, sometimes, flowers! That is totally new behaviors for him to have learned. I have so much more to appreciate about him now than through all the other yrs of marriage. I know these new patterns, choices, efforts have not come easily for him.

I got clearance from hand/wrist ortho today to go ahead w/ PT, since due to the lymphedema, he can do no needles or surgery on my hand. My x-ray showed that I now have bone-on-bone in multiple places of the hand, which is stage 4 osteo. Not very long before IDC dx, I had x-ray of same hand, & only the arthritis in the thumb was detected. I am going to also be having PT on my achilles tendons. I will be so happy to get some strength & mobility back, which will help w/ the pain. I used to use the hot tub to stretch out my legs & lower back; I even used my weights in it. It would feel so good if I needed some pain relief. Now, of course, w/ the lymphedema, it's on the blacklist for me. Now, it has to be relegated to my fantasies! Boy, just how quickly all of our lives changed! Even w/ needing total knee replacement in one knee, hovering between stage 3 & 4 osteo in the other knee, the PT I've just finished for them, along w/ hyaluronic acid inject'ns so I can delay replacement in the worse knee, has made a really big difference in my legs' strength & mobility. I am so ready to feel like gardening again; what a blessing when we moved from the SW up to PA, where there are seasons & so much gardening choices!!!

I will keep you in mind this Shabbat, during the healing prayers, that the strength of community will lift you, guide you, bring you the wholeness of rest & peace that is Shabbat.

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Apr 5, 2018 10:25AM Barbjc wrote:

Not sure if this information will help anyone because I'm sure all individual issues have different causes …

Ever since my bilateral Mastectomy 2/27/18 ( with tissue expanders placed), I have had collarbone and upper left shoulder and shoulder blade pain , and left underarm pain with limited range of motion ( left side is where they took 2 lymph nodes)

I've been to therapeutic massage, chiropractor, and most recently I saw a physical therapist last week. All agree that my 1st rib (which is located up by the collar bone) is out of place, which is causing muscle knots by my shoulder blade and almost a tug-of-war between the out of place 1st rib and muscle by the shoulder blade. Plus I have a mild case of cording (axillary web syndrome) under my left arm pit.

The tissue expanders are under my pectoral muscle, so all the stretching going on is related to all of these issues !

Due to the tissue expanders being in place, my chiropractor can't do her normal adjustment to fix this 1st rib, so the PT will manually have to adjust it back into place over time, and the PT will also be doing a specific stretching PT massage for the cording issue ...

anyways! my suggestion to anyone with shoulder or collarbone pain is to see a physical therapist that specializes in post breast cancer surgery treatments, they are fabulous and even after one treatment with him I feel slightly better… I'm scheduled to receive PT 2x/week for the next 6 weeks ...hopefully my issues will be resolved soon because I can't take this pain much longer and I am so tired of taking painkillers and muscle relaxants!

Hang in there everyone... I keep repeating my mantra "I HAD cancer, cancer never had me!" Fight fight fight!

Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you. Dx 12/20/2017, DCIS, Left, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 1/15/2018 Lumpectomy: Left Surgery 2/26/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 5/19/2019 Whole-breast: Breast

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