Contemplating MX

GmaFoley

Hello all, I want to get rid of the nerve pain in my breast from high dose rads... I have worked with a Pain Management doctor for almost 2 years now to try to find a way to get rid of the pain in my breast.  When I do any type of exercise, including walking, I keel over in pain.  I also have breast Lymphedema that is traveling into my arms.  I know that having an MX will not get rid of my LE or my costchondritis, but it is keeling over with nerve pain multiple times a day that I need help with.  At the moment I'm on 1800 mg of gabapentin (neurontin) and I just started adding Lyrica 50mg at night.  I still have constant aching pain with stabbing nerve pain multiple times a day. I have also been in PT to no avail. I do notice that when I am swollen with the LE, my pain is worse, so I work daily on at least keeping the swell down. Do you think an MX will work on kill the nerve pain? My BS said he would discuss the idea. DH doesn't want me to have any more surgeries (I have already had 2 lumpectomies, 1 cancer and one benign, and 2 other surgeries on this breast) - but he's not in the pain I feel.. I took my first Lyrica last night with my neurontin.. gave me a sense of calm... slept a bit  better, but the pain is still there this morning.  I am so tired of being in a fog because of the meds too. Please Help me with the pros and cons.. I know its my decision but need some on-hand input from people who have done this. I've been mulling over the idea for a year now.

Erica3681

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.

GmaFoley

Erica, thank you for your response.. The team of doctors I have and LE therapist have gone over most of what you discussed above and your idea of the nerve impingement is a question I will put on my list.. If I press on a certain spot, it hurts, if I exercise the same spot hurts.  My pain management doc talked about putting an implanted stimulator in my spine and he thought he could possibly get that pain to stop.  But that is a trial an error method that is $40k.  Not that a MX would be any better. I wouldn't do reconstruction.  Another I heard just recently is to find the nerve and cauterize it?  I have know Idea where I could get that done?  I have mulled this over for so long and I just don't have an answer.  The pain just wears me out...

bcincolorado

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.

GmaFoley

Just went to my pain doc this week and we discussed the options above. He said it could be a neuroma and he could do an ultrasound-guided injection to break it up, but asked me to talk to my breast surgeon first.  I have an appt with BS on the 25th.. Wish I didn't have to wait that long.  But that way, if this works, Mx wouldn't have to be done :-)