Post Masectomy Pain

[Joanne S]

I posted this in the newcomers area a few days ago, but didn't get any responses from anyone with similar condition. My hope is that by posting it in the her2group, I'll find someone similar. I had masectomies with reconstruction (tissue expanders under the pectoralis muscle) in February 2007. I absolutely hated the way from I felt from the tissue expanders from day one. I felt like I had a bra on that was 6 sizes too small and a shirt on that was cutting deep into my armpits. I wouldn't call it pain, but just intense pressure. I had JP drains for five weeks. I visited the Plastic Surgeon weekly for expansions. During the second expansion. I felt some pain when the needle was inserted into the left expander. That same day, I ended up with a breast infection, including fevers and pain, and landed in the hospital for three days in April for IV antibiotics. Afterwards, I continued my weekly expansions. I experienced mild pain on and off. During my last expansion in June 07, I felt horrific intense pain just as the needle was inserted into the left expander, my doctor gave me a couple of preventative antibiotic pills on the spot. Since that day I have suffered through severe episodes of pain whenever I move, breath deeply or even cough. At the same time, I consistently run inconsistent low grade fevers ranging from 99-102. During expansion, I started physical therapy, and after full expansion, I went through radiation. At one point, I had to stop both PT and Radiation for a week when the pain was unbearable. I just finished rad a few weeks ago. I still have lots of pressure on my left chest (tightness and hardness). I do daily stretches and exercises and have maintained almost full range of motion. I still go through days in severe pain on the cancer side, again it goes away for a couple days then it suddenly comes back again. I think it is nerve pain because it is so intense, and sometimes it is coupled with muscle spasms. It hurts whenever I take a deep breath, cough, and move. It's been 6 months since my surgery. My plastic surgeon, radiation oncologist and physical therapist say they haven't experienced a patient with this much pain before. My blood work does not reveal any visible signs of infection and CT Scan doesn't show anything either---my plastic surgeon does not offer anything else except pain pills.... it's been so very frustrating ---Motrin does help diminish the pain while the other pills knock me out so I don't take them. I would love to find out the actual cause and have it resolved. Anyone have similar pain episodes or have any ideas? I found very little about Post Masectomy Pain Syndrome on the net. I have maintained an accepting, positive attitude since I was diagnosed and throughout my BC journey, but this ongoing problem has had me severely depressed for weeks now. Thanks for your interest in reading my story.

[chrisy]

I had a single mastectomy with expander in 2002. I also felt the pressure, but not really any pain - or at least nothing near what you describe. What you describe does not sound normal to me at all. Have you you discussed this with your plastic surgeon? You say the last expansion you had was June 07 - have you seen this doctor since then? My suggestion is to talk to him/her because, as I say, I don't think this is normal.

Take care
Chris

[Catherine]

Wow, the pain you describe sounds really horrible. I wish I could offer advice. I did have a bilateral mast., but I chose not to have reconstruction. So I can not offer advice on the pain. Keep searching for answers, it does not sound normal to me either. I hope others will post their advice and experience.

Catherine

[Shad]

I had some chest pain in the lower rib cage after my unilateral mastectomy. I pointed it out to my physical therapist who was treating me with massage to help prevent lymphedema. She did myofascial release on the area and alleviated the pain completely. May not work for you, Joanne, but see if your PT knows this therapy.
Shad