Recently diagnosed... weird nerve pain after lumpectomy.

Hi jrsno1fan.  Based on your surgery date I'm guessing you have already been back to the surgeon to have him/her assess your healing?  If this pain is impeding your daily life, if I were you I'd contact the surgeon or the surgeon's nurse to review your symptoms and seek further advice.  I had a similar circumstance but it was not near the nipple.  The doc hit me in a part of the breast where the lidocaine had not spread…twice.  Yeah, being in a vice made it a special treat didn't it?  That said, after the lumpectomy you will feel zips and zaps and weird pain as the incision heals and this can go on for months.  If you are dealing with more than that , raise the issue to the right docs. 

Re: the MRI….I have not before encountered anyone with just LCIS who got sent for an MRI (too) so soon after a core biopsy and lumpectomy.  Make sure all is square with your insurance so you don't end up spending 6 months (as I have) fighting with them to pay the bill.  You don't need that stress.

Depending upon whether you are pre or post-menopausal the MO will suggest different drugs for risk reduction.  You will want to read up on this in advance of your appointment.  They all have the potential for side effect or quality of life impacts so analyze the risk/reward given your individual circumstances and ask the MO lots of questions.  Understand if the MO (and surgeon) are of the philosophy that these drugs should be taken for 5 or 10 years.  The former had been the standard until recently but now some are saying 10 years.  As with all things re: LCIS there is little consensus. 

jrsno1fan----I was diagnosed with LCIS almost 11 years ago; my risk is further elevated by my mom's history of ILC.  I had a wide excisional lumpectomy; I do remember the incision took a while to "calm down" (I had some stitches that backed out and surgeon had to remove), but it faded over time so I can hardly see it at all. You'll be amazed how the body fills in the "gap" where tissue was removed. I have just a tiny little divet, I have to really look hard to find it. I do remember tenderness in the area  for several months though.   

I do high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite schedule; I took tamoxifen for 5 years and now have been taking evista for about 5 years preventatively. Your primary diagnosis is now LCIS as it is the most serious of your findings ("trumps" the other stuff---ALH, ADH, and FEA).  Initially, I was seen by my oncologist every 6 months for the first 5 years (now just yearly); they do a breast exam, blood tests  for tumor markers, monitor my tamox/evista use, coordinate my imaging tests, go over any SEs (which have been very minimal), discuss BRCA testing, etc. I see my gyn for the other breast exam. The other reason to see an oncologist is to go over risks--(LCIS increases your risk for invasive bc in the future); your risks for bc, as well as risks and benefits from preventative meds. Your grandmother's stroke does not necessarily put you at any higher risk of stroke; and the risk of any serious SEs from tamox (or evista)--endometrial cancer, blood clots, stroke---are very very low, <1%; certainly less than the increased risk of bc from LCIS. 

I've been dealing with this a long time, so if I can answer any more questions or help you out in any way, let me know. 

Anne 

I hear your frustration.  It took me more than 3 months to get my first appointment with an oncologist (to prescribe my tamoxifen).  My incision improved cosmetically a lot over the next 6-12 months, but I didn't have the nerve pain you are experiencing.  

If you want to go this route, there are some pain meds that tend to work better on neuropathic pain, such as gabapentin, amitriptyline (both of which are _not_ scheduled items, but do require a prescription) or other antidepressants/SSRIs, or certain other anticonvulsants (which also are not scheduled but do require a prescription), or pregabalin (which is scheduled and requires a prescription).  Often these meds take some time (weeks-months) to work.

I don't wish chronic pain on anybody, even my worst enemy, so I sure hope this doesn't turn into a chronic condition.

I am guessing most oncologists don't deal with surgical issues, though if you have chronic pain, I don't know if they'd handle that.