October 25, 2000
Post Mastectomy Syndrome
My name is Sarah and I live right outside Philadelphia, U.S.A. I went yesterday to a Breast Cancer seminar and one of the women there told me about your story. I just downloaded it and read it.
My mastectomy was in June 1999 and since the surgery I have had constant burning pain in my chest, scar area and under my armpit radiating all the way to my left back area. For months, I have complained to my surgeon(one of the biggest and most respected breast surgeons in this area) and he just kept on telling me that it is normal to have different kinds of sensations after mastectomy and with time it should get better. Well, after trying physical therapy, different kinds of meds including narcotics, it was getting so bad that nothing was helping and I was having the worst pain when I was trying to lay down on my left side in bed, and all day on and off. My husband is a physician and I am a nurse and he thought that it sounded like some sort of "Neuropathic Pain" but everyone in my Oncology team agreed that it is the nerves trying to regenerate themselves after the surgery. I didn't buy it.
Last week I went to another seminar and there was a Pain specialist who talked about what is known as "Post Mastectomy Syndrome" which I had never heard about. The symptoms are exactly what you described in your letter and it sounded like what I have been having-burning near and around the site, underarm feels like a porcupine is poking all the time and even clothes rubbing against you hurts. By the way, I have not been able to wear a bra or any clothes since my surgery also without the pain. So, to make a long story short, I went to see this pain doctor.
He started me on Nerve Blocks-injections of some cortisone and lidocaine directly into the nerve in my chest under flouroscopy. The first injection was not very pleasant, pretty painful but it helped him to diagnose this syndrome. I also got a nasty bruise from the procedure and could not get another injection a week later. But it helped me for about 24 hours and I am hoping the with about 3-4 more shots and also he put me on Noretryptaline at night for a better night's sleep, that it will help. The pain doctor is also an anestiologist and he is going to try his best to help me. So we will see. he explained that he is trying to break the pain cycle but it only works in about 60% of patients with this type of nerve damage. Since i have had it for over a year it may be hard to treat.
Wendy, stick with your pain specialist and I hope you get some relief. You are not crazy-the pain is real and neuropathies can be very painful and last a long time. I am also on a low dose anti-depressent(for my hotflashes which were unbearable from the Tamoxifen) so that helps with the pain some too. Take Care and let me know how you are doing. We must educate these surgeons about this syndrome and people like you and me will.
Sarah from Philly