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Can anyone help with post mastectomy pain syndrome?
I had a double mastectomy two years ago, after a lumpectomy 7 years before that, I needed chemo and radiation both times. My first was triple negative , second was 60% positive, now on Tamoxifen which is difficult ,but bearable.
I need support from anyone who gets that I have never been the same, I have tightness across the chest as well as muscle and shoulder and arm pain on the right side, which is where the small tumors
were both times, no lymph nodes were positive, but they removed sentinel nodes the first time, and more the second, but. not all;.
Any advice will help. I am 77, never had reconstruction.
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The first thing i would ask is if you have seen your medical team to share these concerns? I had a dbl and 3 sentinel nodes removed, and I ended up with a trigger finger and a frozen shoulder. Mine resolved with exercise and visits with an occupational therapist. I was tight and un stretched. Have you gone to an occupational or physical therapist. Whatever the age, pain is pain. Pain at 77 is tough.
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1 ReactionThank you for some empathy.
Yes, I have had therapy, acupuncture, Botox shots help a bit, 4 times a year. I exercise daily, walk and do silver sneakers.
My team says keep up with the Botox and I have had so much surgery and radiation that this is to be expected. Forgot to say that I had to have a flap type surgery to get radiation the second time, they had to cut my latisimus dorsi. The surgeon said it all looks fine 2 years later.
carrot 47. It is good you are staying busy. I had a skin saving mastectomy, so no other trauma on my body. Water, i just had a thought about swimming. I think it is because as i walk in the morning i think of my life long-ago. My brother talked me into swimming laps as he did in an Olympic pool need our house. He liked to run, i played racquet sports.
Pain can only be felt by us. I have friends that look at me and say i look great!!!!
I hope someone else posts some good things to read about this. Take care of you today.
Thank you.
I hope someone else will comment.
Hi @carrot47, you may also be interested in the comments in this related discussions:
- Post Mastectomy Pain Syndrome: How are you coping?
https://connect.mayoclinic.org/discussion/post-mastectomy-pain-syndrome/
Thank you.
My niece had a double mastectomy recently. She felt stabbing needle type pain. She is taking a low dose Lyrica (pregamblin), and she says it helps. It works on nerves. I take it too for sciatica.