After double mastectomy: Why do I have burning pains and more?

You are correct, I think. From what I’ve been told by my oncologist, it is nerve pain. The term phantom pain is also commonly used with veterans.

@stars7 here is an article you may find helpful.
https://www.mdanderson.org/cancerwise/how-to-relieve-nerve-pain-after-a-mastectomy.h00-159699912.html#:~:text=Nerves%20that%20are%20cut%20surgically,go%20away%20on%20its%20own.

Hi Cathy,
I still feel the occasional pain that you describe but I've learned how to manage it over the years. For me, it feels like a cross between a tingling and a burning, also with pressure and tightness. I also just learned there is a term called Post Mastectomy Pain Syndrome (PMPS). I am 11 years out, post chemo and left side radical mastectomy. I have an active life, I still work full-time, ride my bike, walk, dragon boat, kayak. I find that my 'pain' is triggered from over-doing it when I am already fatigued, and also when there is an element of stress/anxiety coupled with the fatigue. I can tell you that I go months and months without experiencing it at all. I use it as a measure stick that lets me know that I am pushing it when I need to rest. Most recently, I have been suffering from a prolonged recovery from a bad bout of the flu/cold/pneumonia/covid whatever the heck that was. I was very sick for two weeks, but exhausted, weak and short-of-breath for another month beyond that, still counting. Last week, I tried to push myself through the exhaustion for 8 hours to prove I was ready to get back to work. What resulted was a re-occurrence of my chest pain, which I've been dealing with now for a week. I knew what it was, but my new family doctor is running me through the gamit of heart and lung tests to be safe. A trip to emerg confirmed that my heart is ok, which re-affirmed it is the PMPS I've grown used to these 11 years. What helps ALOT is addressing my anxiety/stress and the body tension that is associated with it. I highly recommend learning and practicing muscle relaxation techniques. These are what help the most. Learn to let go and relax the muscles in your chest. I do a lot of self-massage which also helps, and a heating pad on low for 5 minutes at a time can be very soothing. I did not have breast reconstruction. The massage helps to break up any scar tissue and keep everything from seizing up. I put my hand on my chest and move the skin/tissue in a circular motion in both directions, placing my hand in different places to cover the whole region. You are still early on in your healing path at 2 years out. Hopefully, your pain resolves completely. But if not, I hope my experiences and suggestions can help. I only learned about the term PMPS a week ago (after 11 years, duh. No one at my cancer clinic ever used that term). I've been looking through the academic research done on it through Google Scholar. Nothing so far has really helped me except that I did find one study out of Italy that mentions fat injections as a beneficial treatment which I may look into further. Others mentioned anti-depression medication and epilepsy drugs as working well for the pain for some people. I'm personally more interested in the non-drug solutions. Just know that it is not your imagination, perhaps tell your doctor about PMPS to get her onboard. My fatigue lasted for years - 4, 5? But it did get increasingly better. Walking and fitness helped so much when I was finally able. Join a breast cancer survivor dragon boat team if you have one in your area. You will find a great group of support people through them. Even if you have never done it before! Best of luck!

Hi! Your reply means the world to me. The 'pain' you feel/felt is exactly what I'm going thru. I'm only 1 year after chemo, so it's good to know how long it may last. Daily, about 10:30 am, I get hit with fatigue; it feels like I've not slept for days. And I'll try the heating pad. I don't like the idea of taking more drugs for depression, etc. The double mastectomy was devastating and none of the implants worked. 5 surgeries within 6 months took so much out of me.
The medication Letrozole gives me many of the side effects that the chemo did...except for my hair. Minoxidil, Rx pill plus otc topical solution has been wonderful. (except it took 4-5 months to start working) My oncologist said I should be on it for a total of 5 years. YIKES! I've looked for support groups in my area, there's none. That's why I joined the online groups.
Thank you so very much for your words and advice. I'll hope for the best.

I hope you're doing well. I 'think' I'm doing better, but not 100% yet.
I'm afraid of abandonment; I'll be left alone. Sounds silly, but it's just one of my fears.
I never thought I'd become so paranoid. Maybe I'm becoming insecure.
My husband and I don't talk much anymore. I need to talk with him at some point about what I'm going thru.
Be well; stay safe!

Hi @cathybrown98. Thanks for sharing your feelings in your post. Wishing you strength and continued healing.

This is the first site I landed on when I researched what I've been experiencing in recent weeks. I had a double mastectomy 15 years ago and had implants as a part of the process. After a couple years of "adjusting" to them, they haven't bothered me. However, I have been feeling a "tighnness" in my left breast and occasional soreness: nothing excruciating, and about a "2" on a pain scale of 0-10 with 0=no pain. I have, however, been undergoing a lot of stress professionally and personally, so the PMPS makes total sense. I'm going to follow up with my GP when I have my annual exam just to be safe.

Wishing all of you the very best in your recovery, however long it's been.

My double mastectomy was 2.5 years ago. I,too, have tightness and pain,
sometimes the pain is like a burning. I had 5 surgeries in 6 months.
Implants didn't work for me, after 3 times of changing them I gave up. I
can't reach too much as it tightens.
Talking to your GP is a good idea. I wouldn't think you should be having
issues after 15 years. Good luck and keep us posted? ❤️