Pain: Has anyone else experienced this?

Posted by notacopy @notacopy, Sep 28, 2023

I finished my month of radiation after DCIS breast cancer in my right breast. All went very well. I'm an 81 year old extremely active (I walk 8 miles a day) woman. A couple of weeks after the radiation ended, I developed severe pain in my right shoulder, followed by pain in my right groin area, then my left shoulder and left groin, though not as bad on that side. The PT has no idea what it could be. I was not in an accident, didn't take a fall, didn't do any type of exercise that I don't normally do. Someone I was talking to mentioned radiation caused fibrosis. Does anyone have any experience with this? I'm awaiting a call back from my radiation oncologist. Meanwhile, the only way I can get through the day is with Gabapentin and Ibuprofin 800. Help!

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I had left breast lumpectomy and sentinel node biopsy in December 2021 and a month of radiation ending 1 March 2022. Before the end of 2022 I developed pain in my left shoulder usually when I lift my arm above a level. It’s not always there but feels like a stab of arthritis when it happens. The surgeon’s office doesn’t believe that it’s related to the surgery or radiation but I don’t know how they can know that especially given then pain down the back of my arm after the lymph node biopsy.

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notacopy, did the PT you saw specialize in lymphedemea? A PT who deals with this should be able to make a call on this and figure out what to do for you or provide massage training and treatment for you..

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@gldilli

I had left breast lumpectomy and sentinel node biopsy in December 2021 and a month of radiation ending 1 March 2022. Before the end of 2022 I developed pain in my left shoulder usually when I lift my arm above a level. It’s not always there but feels like a stab of arthritis when it happens. The surgeon’s office doesn’t believe that it’s related to the surgery or radiation but I don’t know how they can know that especially given then pain down the back of my arm after the lymph node biopsy.

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@gldilli

Where are they leaving you with this situation? It is upsetting that they are saying that it is not from the surgery or radiation. Then who do you see and what do you do? Are they trying to absolve themselves but not help you?
Surgery can cause muscle or nerve damage and radiation can cause fibrosis which can lead to breast or armpit lymphedemea.....

My lumpectomy was Nov. 2022. Pain since surgery in center of armpit...Dull pain which happens with sports bras pressing or bras pressing. Also, hurts if bra hits 2PM area where turmor was. Told by radiologist in August that I have breast lymphedemea.
Slow journey to get help as so far have had evaluation by Pt lymphedemea expert as am awaiting seeing her again mid Oct. Am seeing NP at breast surgeon's office next week as I want to know what this is too.

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@timely

notacopy, did the PT you saw specialize in lymphedemea? A PT who deals with this should be able to make a call on this and figure out what to do for you or provide massage training and treatment for you..

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No he didn't. I'm thinking now it might be polymyalgia rheumatica. The symptoms described on the Mayo website mimic mine exactly. Trying to get an appt with a rheumatologist. Hope i can get one soon!
Thanks for your reply.

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@timely

@gldilli

Where are they leaving you with this situation? It is upsetting that they are saying that it is not from the surgery or radiation. Then who do you see and what do you do? Are they trying to absolve themselves but not help you?
Surgery can cause muscle or nerve damage and radiation can cause fibrosis which can lead to breast or armpit lymphedemea.....

My lumpectomy was Nov. 2022. Pain since surgery in center of armpit...Dull pain which happens with sports bras pressing or bras pressing. Also, hurts if bra hits 2PM area where turmor was. Told by radiologist in August that I have breast lymphedemea.
Slow journey to get help as so far have had evaluation by Pt lymphedemea expert as am awaiting seeing her again mid Oct. Am seeing NP at breast surgeon's office next week as I want to know what this is too.

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I felt like my shoulder ache was being dismissed as an unrelated old age complaint. I’m 63 and in pretty good shape otherwise. At least the NP documented it in the record so that if anything comes of it in the future it’s there.

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@notacopy

No he didn't. I'm thinking now it might be polymyalgia rheumatica. The symptoms described on the Mayo website mimic mine exactly. Trying to get an appt with a rheumatologist. Hope i can get one soon!
Thanks for your reply.

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Please let us know what happens and what they can do for you.

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I will! Thanks for your interest.

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@notacopy

No he didn't. I'm thinking now it might be polymyalgia rheumatica. The symptoms described on the Mayo website mimic mine exactly. Trying to get an appt with a rheumatologist. Hope i can get one soon!
Thanks for your reply.

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@notacopy, here's a discussion about radiation fibrosis:
Short Course Radiation Treatment and Radiation Fibrosis
https://connect.mayoclinic.org/discussion/short-course-radiation-treatment-and-radiation-fibrosis/
See this article:
- Myalgia: Causes of muscle pain from breast cancer treatments https://www.breastcancer.org/treatment-side-effects/pain/muscle-pain

Should your diagnosis turn out to be polymyalgia rheumatica, I want to let you know there is a support group for that here too:
- Polymyalgia Rheumatica (PMR) Support Group https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

I'll be interested in learning what you learn and what the rheumatologist says.

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Honestly I have very bad knees for years having ruptured my ACL. Plus shoulder pain from heavy lifting at work. Frankincense oil is extremely helpful for me.

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@timely

notacopy, did the PT you saw specialize in lymphedemea? A PT who deals with this should be able to make a call on this and figure out what to do for you or provide massage training and treatment for you..

Jump to this post

No, and I cancelled the remaining PT appointments because he told me he only had time to evaluate my shoulders, although both hips were also very painful. I got an appointment with a rheumatologist for three weeks from now. Hopefully she'll be able to diagnose properly. Thank you for your note.

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