Recently diagnosed... weird nerve pain after lumpectomy.

jrsno1fan

I've been posting over in the "waiting for test results" forum and they are finally in. I'm joining the LCIS group. I had biopsy on 6/24 and lumpectomy on 7/14. LCIS and atypical lobular hyperplasia along with atypical ductal hyperplasia and flat epithelial atypia, that's what the final pathology report says. Everything I've found and read about about this says nothing to worry about, caught early, nothing really to do except follow up mammograms more frequently. So now what? I have an MRI scheduled for 8/4 and they are in the process of referring me and making an appt with the medical oncologist. But if there is nothing else to do why do I need to see an oncologist? I don't get that. 

My issue right now is the nerve pain from the biopsy. When my doc was doing the stereotactic core biopsy she hit a nerve and I about came off of the table. If I weren't in that vice grip I would have been. It felt like she had taken my nipple turned it inside and was was slicing it off with no numbing meds. It's been a month and yes I've since had the lumpectomy but that nipple pain is still there. It hurts constantly, it never goes away. What can I do? Will it eventually stop? Is this normal? Help. 

lyzzysmom

Jrsno1fan, 

My understanding, and somebody will correct me if I am wrong is that LCIS is often hormone positive and can also increase risk of breast cancer in the future so they want to do regular followups. Also LCIS may occur in the other breast. Seeing an oncologist makes sense as they may want to put you on one of the pills available to  reduce your future risk. The MRI sounds to me like they are just being really thorough..

So sorry about all the pain from the biopsy. Those core biopsies - Yuck!! Hopefully somebody will come along soon with more knowledge than me .   

Wishing you best of luck!!

MsVeryDenseBreasts

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

Thank you for the input. I am post-menopausal. Family history of BC (maternal g-mother, and 5 first cousins), and probably unrelatable but still hx my son had testicular ca at 18 mts and also at 21 with lymph node invasion. My surgeon advised getting the MRI because dx mammo showed calcification in the other breast but they were scattered and not clustered so she just wants to make sure. Reading up on the meds have pretty much convinced me not to take them. My g-mother had a fatal stroke in her 4th year post mx. That risk is way to high for my liking. As for the pain, yes I went back for my follow up this past Tuesday. I didn't say anything about it because I was still recouping from the surgery so I wasn't sure what was real and not real at that point but now I know this is still the same pain from the biopsy. The incision is hideous. It's ugly, uneven, lumpy, kinda zigzagging and the suture is sticking out of one end. The path report says there was a section of skin attached measuring 3 in x 0.8 cm. I didn't realize she was taking that much skin. But she did and now it's to late to do anything about it. I'm so upset about this. It's still kinda swollen right now so it's full, I can't imagine how bad it's going to be when the swelling goes down and it's all caved it. 

Anonymous

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 

jrsno1fan

I called the dr today about the sutures sticking out and they said that's sometimes normal just don't pull on them and snip it if it bothers me.  The nerve pain is still there but I'm gonna see if it lightens up and let the oncologist know when I get in to see her. It's been a month since the biopsy results came and I still don't have an appt. It's very frustrating. I just wanna get this going and get it done.

leaf

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.

Anonymous

jrsno1fan-----noticed you mentioned an MRI for 8/4--how did it go? Did they give you an appt yet with the oncologist? You can question them at that appt about the status of your LCIS (pleomorphic or classic). basically the options are really the same---close monitoring, preventative medications, or bilateral mastectomies----although I have read that some feel PLCIS should be treated more like DCIS and given radiation in some cases.   Hope you get good results soon!

Anne

jrsno1fan

Thank you awb. I had the MRI this morning. I go back on Friday for the results. Oncology appt is on the 22nd. I have already decided that no matter what the outcome of anymore tests are I will not be taking the hormone therapy. This very personal choice was not easy for me to make but the risks of the SE far out way the benefit of the reduction in reoccurrence. Having such a strong family history of BC and with my grandmother having a fatal stroke in year two of the therapy, I'm not willing to risk it. I have not made a 100% decision yet but I am leaning more and more toward PMX. I will be making that final choice on Friday when I get the MRI back. If there is anything there then surgery it is. If there is nothing then I'll go the route of close monitoring and be done.  I'll keep ya posted as to the results.

Kim