Contemplating MX

Hi GmaFoley,

I am so sorry that you're experiencing so much nerve pain. I hope the addition of Lyrica will help, but I can understand why you'd do (almost) anything to find a solution that would allow you to reduce or eliminate meds. Are there any theories as to exactly what is causing the breast pain? It's less common to hear about nerve pain after a lumpectomy than a mastectomy, although radiation can sometimes leave residual nerve disturbance, but usually pretty mild. So, what makes me nervous in thinking about your taking the step of having a mastectomy is your observation that you notice that when you're swollen with LE the pain is worse. That suggests that the LE swelling is compressing the nerves that are causing the pain.

So, that leads to two questions.

First, would you risk making the LE worse if you had a mastectomy? Surgery always creates that risk, I would think, by disturbing the lymph system and creating new scar tissue. This seems like something to discuss with both your breast surgeon and your lymphedema specialist, if you haven't already.

Second, are the nerves that are creating the pain in your breast actually IN your breast? That is, would they be removed during a mastectomy? Or, is the pain a referred pain from nerves that were damaged during lymph node removal or radiation?

Maybe these are not the right questions or are ones you've already addressed. Basically, I'm encouraging you to do everything possible to make sure the pain really could be alleviated by a mastectomy before taking that step.

One story that does come to mind is a woman who had a bilateral mastectomy and implants, then experienced severe nerve pain. She ultimately had her implants removed and had GAP reconstruction. During the GAP surgery, her surgeon found a nerve that was being impinged by scar tissue from the mastectomy/implant surgery. After she freed up that nerve, the pain was greatly improved. So, if there's a chance that something like that has happened in your case, where scar tissue may be impinging on a nerve, surgery might be helpful, IF the surgeon could locate the source of the problem in the course of the surgery. I wonder if there are any imaging techniques that might be helpful.

Well, I don't feel that I've been very helpful, but I really hope you find a way to make the pain better.

Hi:

I know my DH went to a pain management specialist who was able to do some kind of injection into the nerve in his leg when he had severe pain and it helped for many months.  He said it if came back the nerve cauterization thing is the standard treatment at that point.  MX brings it's own set of pains in itself of course and there is nothing to say you still won't have issues with nerves after mx.  Just evaluate everything they tell you so you can make the best choice for you. 

I wish you the best.