Is it natural to have a burning feeling after a mastectomy?

Hi, Ssalazar,

Welcome to EmpowHer, and thanks so much for writing. I'm sorry you had a double mastectomy in February and have experienced so much pain, but I'm glad you're on the mend now.

Pain after mastectomy is very, very common. There is actually a name for it: Post-Mastectomy Pain Syndrome (PMP). The Journal of the National Cancer Institute describes it as "sharp stabs of pain superimposed on feelings of an aching, burning tightness" and says that it "can make an agony of the lightest touch or slightest movement." This sounds exactly like what you are writing about.

Some doctors have trouble believing this pain, the article says, because the incisions have healed and there is no recurrence of cancer. But based on a study at the University of California San Francisco, the lead author of the study believes that at least 20 percent -- 1 in 5 -- women suffer from this. And she believes that it is due to the surgical trauma to the intercostal brachial nerve, which cover the chest, the armpits and the upper arm.

Here is the journal article:

http://jnci.oxfordjournals.org/cgi/content/full/90/10/731

Another doctor in the same article says it's very important to have physical therapy to help maintain mobility in the shoulder and upper arm. Have you had any difficulty with this?

That doctor is Richard Payne, M.D., a neurologist who has headed the pain management service at the University of Texas M. D. Anderson Cancer Center in Houston for 6 years. He believes that because it is a nerve injury, a tricyclic antidepressant -- amitryptiline, for example -- may be indicated. The tricyclics are thought to help nerve pain. But if that doesn't help, he prescribes opoid pain medicine.

What's very important here is that YOUR doctor understands this pain, knows that it is real and helps with your pain management. Have you mentioned it to her or him? What was the response?

In terms of the expanders, it appears that the injection of fluid, if done slowly enough, should not be painful. One doctor calls it "very mild discomfort." Another says "may be uncomfortable but not painful." Another says that if the patient feels pain, the fluid injection needs to stop or some fluid needs to be taken out. Yet another doctor, however, says that some patients have little pain and others have a great deal. With the latter, he goes very slowly and removes fluid if he needs to.

You are right to be concerned since you are still having PMP at least part of each day (though that's a very good sign that you are healing). Please call your doctor now, explain that you are having this pain every day in the afternoon, and ask her or his opinion on whether the injection of fluid may make it worse. If you are still having to be very careful of what you wear, I know you don't want extra pressure on this area.

Will you do that? Call and ask? And will you come back and update us?