4 years NED and now severe pain in both shoulders

Snoodles

Hi, I am 4 years NED from Her2+ Stage 3c Grade 3. I am now dealing with severe pain and popping in both shoulders that came on fast and bends me over double in pain, it actually feels like my bones are dis-locating . I was treated with chemo, a double mastectomy and radiation and had some lymph nodes removed. I have had a desk job since 1989 and have done nothing to injure myself. Does this seem like something that could be related to my cancer treatment? I have to see a doctor soon, the pain is almost unbearable and I have decided to start with my radiologist. When it started in my left shoulder I had planned to get an appt with an ortho but then when the right shoulder developed the same thing I decided the Radiologist might be a better place to start. It is truly unbearable at times and continues to get worse and I have a high pain tolerance. Does anyone have any ideas??? Thank you in advance. I was a member here during all my treatment but couldn't remember my user name so I had to create a new account today. Help me please with advice.

AmyQ

Snoodles, could it be arthritis? Did you have any previous injuries to your shoulders or were you athletic in high school where you might have damaged your body in sports?

Isn't it awful how our brains automatically go to cancer when we have aches and pains. I just hate it. Seems like a radiologist is a good place to start. Perhaps an orthopedic doc if you can't get in quickly.

Good luck -

A

DATNY

If it is symmetric it is unlikely is cancer. I have high pain in my jaws joints after the treatment.

Anonymous

How long have you been in pain? My left shoulder started popping over the summer. Initially, it was somewhat painful, but now I feel the pop with no pain at all. I did injure both my shoulders when I was young (also my knees, wrists, ankles, and one toe).

If it continues to be painful, then it's good to be checked out. I have had multiple scans since my shoulder started popping, and nothing has been picked up in my shoulder.

Hope you find relief soon.

Moderators

Hi Snoodles,

We're so sorry for what brings you here, but we're glad you have this community to come back to for support! We agree that the radiologist is a good place to start, and we hope that your appointment yields some answers. Please keep us posted!

The Mods

2019whatayear

This has to be super stressful-- lots of people carry stress in their shoulders and necks. This may be exacerbating your pain and sitting at a desk job in front of a computer or looking down at your phone could certainly cause shoulder pain esp if you have any arthritis. I hope you get answers ASAP and that it isn't anything serious!

Snoodles

amy, I have come to the conclusion that it is arthritis causing the pain. I did a lot of reading as that now makes the most sense. Yes I agree, no matter what happens our minds go to cancer.

Snoodles

thank you all for responding. I made an appt today for 2 weeks out. After much reading, I decided to go back to a rheumatologist. I have a long list of health problems including autoimmune diseases so I will start there and get some scans and then treat accordingly. Thank you again.

JoE777

I think I would start with my oncologist. I chased my symptoms for 6 months only to discover I was metastatic

wallycat

The popping sound doesn't fit, but have you heard of frozen shoulder. Very common, especially in middle-aged women.

I hope you can determine the cause and start to relax. Best to you.

jessie123

I don't have pain, but I do have extreme tightness in my upper back, neck and shoulders. It gets so tight that it actually pulls my head to the side. It started two weeks after I ended radiation. At times it's gotten so bad that it radiates to my jaws. I went to physical therapy for it and that did help a lot. If I don't do exercises at home daily the sensations come back. What the heck is that? I don't want to do daily exercises the rest of my life. I want my old self back. Guess I need to go to an orthopedic doctor, but I was hoping it would go away on it's own. Has anyone else has this type of symptom?

MinusTwo

Jessie - my RO and the PT after radiation both said I would have to exercise and stretch the muscles every day - for the rest of my life. The radiation damage caused the muscles/nerves/skin to pull back just like a rubber band.

SNoodles - rotator cuff? Yes, I'd see an ortho and get X-rays first thing.

TB90

Minus: I totally agree. I have to stretch my shoulders and neck muscles all the time or else I get a muscle cramp that runs down my neck into my shoulder. Very painful, but goes away after a good stretch or massage. Worse also when I sleep awkward.

MinusTwo

TB90 - I just got the name of a massage therapist who is supposedly familiar with breast cancer patients. I've promised myself that will be my B-day present to myself this year.

jessie123

MinusTwo -- but even the upper back muscles and neck muscles???? My RO said the radiation didn't affect that area, but maybe he just doesn't want to tell me it did. I thought it was from bending over my computer in a recliner for months through my treatments. I have purchased a new (NON rocking/reclining) chair and have moved my laptop to a table, but the tension continues this many months later. These doctors really should discuss possible side effects between MX and lumpectomy. If I had had a MX I would not have needed radiation. I was just too afraid of the longer need of anesthesia with a MX.

jessie123

TB90 -- did yours start soon after radiation?

MinusTwo

jessie - I think if the PT helped, you will need to continue the stretching exercises or go back for another round.

did you consider truncal lymphadma? Even the removal of just serial nodes puts you at risk. There should be some useful info on this site, which was originally created with lot of input from BCO members.

https://www.stepup-speakout.org/

TB90

Jessie, I had a Mx and still opted for radiation so you can never totally plan or avoid treatment. Your shoulder pain could be due to a hundred causes. Computer work is definitely a possibility. I now believe, as per Minus, that radiation can affect far more than the direct target. On- going throat issues, thyroid, etc. But do not worry too much. The vast majority of SE’s are annoying, not life threatening. The first few years of my recovery, I focused in on shoulder and upper back pain too and was convinced it had gone to my bones. The more I stressed, the worse the pain. But stress is also frequently expressed in upper back and neck. Now that I no longer even think about bone metastasis, pains come and go and never persist. Stress has so much to do with this. But do explore it with your dr. Just know that pain where you describe it is so common, particularly after a bc dx. We have been there. Hug

TB90

Jessie: I had so many aches and pain that caused panic in the first few years post Mx, that I cannot recall what started first and when. I still have, but no longer lose any sleep. At 60, think that aging and arthritis are more likely. But still extremely active.

jessie123

MinusTwo - thanks - I'm going to look that up right now.

TB90 -- I kind of think that you are right. I am very stressed. I won't even take the AI because of stress and that causes me even more stress because I know that I should take it. I guess my head will get straight one day - hopefully soon (-: