Considering prophylactic BMX after lumpectomy

Staceybee

I am considering pursuing a bilateral mastectomy after having already had a lumpectomy and would like to hear from anyone who has been in the same place and decided either way.

I had an ILC and another suspicious area. Two experienced breast surgeons advised me to have a lumpectomy. They said that while many women want to have mastectomies, it is often too radical. I was very new to understanding BC and followed their advice. However, the more I learn about ILC including its tendency to be multifocal and how difficult it is to detect, I am worried that something was missed. The pathology for tumor margins and the suspicious area were also full of all kinds of bad-sounding things. The surgeon said I also likely have a lot LCIS in the other breast, so I think a recurrence is likely at some point.

In addition to the ILC tumor that was removed, the margins and the other suspicious area includes: LCIS classical with calcifications, sclerosing adenosis, pseudoangiomatous stromal hyperplasia, LCIS classical with focal pleomorphic features and calcifications, atypical ductal hyperplasia, radial scars with calcifications, intraductal papilloma with collagenous spherulosis. It all sounds horrible. Do I have any normal breast tissue?

I have not been able to discuss this with my breast surgeon yet and have a meeting coming up, but I anticipate pushback on the BMX. I think breast surgeons are focused on breast conservation and not over-treating, but I am worried about being under-treated with the lumpectomy.

bella2013

Staceybee, I had a lumpectomy and thought I would have rads. My lymph nodes were negative but my margin were not clear. My tumor was large...almost 5 centimeters. There were two spots in question and they were far apart. My BS said there was no breast tissue there so the questionable spots would involve skin and muscle. He would have to remove a large area of skin on my left breast. There were thoughts that rads might take care of it. My BS said that whatever would give me peace of mind when I laid my head on my pillow at night that is the decision I should make. My MO said there would be no forward movement in my treatment plan until I decided what I wanted to do.

After my lumpectomy, they knew so much more about my cancer than they did after the biopsy. Since I did not have any node involvement I could have a simple BMX...no nodes removed and no muscle from the chest wall...just skin and breast tissue. Having BMX also took chemo and rads off the table. After surgery I would start with Anastrazole.

I opted for BMX with DIEP Flap reconstruction. I had my surgery on February 22 and have not regretted my decision at all. If you want to know more about DIEP Flap Reconstruction look for the 2018 DIEP Flap discussion group. Lot’s of knowledge and experience from women who have had that surgery this year.

I think the decision for BMX is yours to make not your doctors. It seems like you have a lot going on in your breasts. Your are going to be on the 6 month mammogram roller coaster ride if you stay your course now. BMX...no mammograms!!!

Your BS may be more open to BMX after getting your lumpectomy pathology report. They know so much more about your cancer since your lumpectomy. Also, remind him of “your peace of mind!”

How this helps some. Blessings as you make your decision.

JaBoo

I am thinking about BMX too. I had to have 2 lumpectomies due to unclear margins. The path report showed worse stats (biopsy said grade 2 and HER2 negative - boom, pathology said grade 3 and HER2 positive), but it was already too late after the lumpectomy was done. The stats granted me the full force treatment. After chemo, I'm considering BMX. Still not decided.

And I'm still waiting for genetics

NotVeryBrave

I can't weigh in with the same surgical experience, but I do know the experience of having providers push for breast conservation. Just because a breast can be saved doesn't mean that it always should be. The patient is the one that has to live with the consequences, either way - whether it's concerns for the future or cosmetic results

If I were you - I'd go into that appointment with the BS with a clear explanation of what you want and why. It's possible that they will agree after seeing the pathology. And if they don't - seek a second opinion. There's nothing worse than both not getting what you want and feeling like you're not being heard.

Yaniza

Hello, I had a lumpectomy with clear margins and no node involvement but still opted for a bilateral mastectomy.

When the pathology report came back from the bilateral mastectomy it was revealed that there was a small mass in the so called non-cancer breast.

My main reasons for the bilateral mastectomy were number one; no chemo or radiation prescribed; and 2, I knew if I didn't that I would worry myself into getting cancer on the other side.

Stress is a huge component in one's health and I really needed to relax as much as possible.

Staceybee

Thank you for the responses and perspectives.

I have only met with my breast surgeon 2x - once for the consultation and once for the post-op report. She is super busy. In the post-op we focused on the micromet in the sentinel node and whether I would need chemo. So we got the process for the oncotype started and I moved on down the assembly line to meet with the oncologist. We did not have time to talk about everything else that was in the pathology report, which I read on my own later. Because my oncotype was 13, the two oncologists I saw strongly advised against chemo but everyone was on board with radiation, which I did and completed.

Now as I am preparing for my scheduled 4-month follow-up with the surgeon, I am analyzing all the other bad stuff in the pathology, which is why I am thinking about the BMX. I understand now that having had radiation could be a complication with MX reconstruction -- and the doctor might say well, if you want an MX now, you shouldn't have had radiation. The answer is we simply did not have time to talk about it in the one meeting we had and I just got pushed down the line and did not know to question it at the time. And with the nodal involvement, I would not have been comfortable not having one of either chemo or radiation and everyone was against chemo. Hopefully not too much damage was done by radiation. My skin held up pretty well and looks largely normal at this point.

It will be interesting to see how the surgeon responds to my ongoing, and now more educated, concerns. She may be defensive about validating her original advice on the lumpectomy, but I will raise all the LCIS - including the pleomorphic and other bad stuff that turned up in the surgical pathology. I am going to ask to meet with a plastic surgeon to see what my options are.

Runrcrb

Staceybee, have you considered a second opinion with a second breast surgeon? Agree with others that often surgeons start with lumpectomy until more in known that would indicate a mastectomy for better outcome (better being whatever is important to you). The statements in your message that are worrisome to me are "she is super busy" and "we did not have time to talk ..." My breast surgeon made time to talk to me until I was finished asking questions.

I saw two plastic surgeons before deciding on a unilateral mastectomy rather than the double that my breast surgeon recommended. You do need to talk to a plastic surgeon specializing in breast reconstruction before making any final decisions about reconstruction.

Ultimately, this is your body and your life and as others have said, you need to be able to sleep at night. And any doctor who is not open to your questions, your reading and research as well as doesn't allow adequate time for counseling and planning with the patient shouldn't be on your team of doctors. (Sorry - might be a bit strong here but obviously, very important to me that doctors listened to ME.)

borogirl

I had lumpectomy on left side in March, and although there was no malignancy found, I did have a lot of abnormal stuff going on (complex sclerosing lesion, florid usual type hyperplasia and columnar cell lesions with focal atypia) and I have dense breasts, and my mother had DCIS (treated with lumpectomy, radiation, and tamoxifen). At my follow up appt with BS in March he mentioned that some women decide to go ahead and have prophylactic mastectomy in the same situation, but I wasn't ready to go that route at that time. I started doing some research and was leaning towards doing mastectomy on both sides, and planned to discuss it at my next appt. I had followup ultrasound in May and resulting biopsy in June of a spot on the right breast showed extensive sclerosing adenosis. That sealed the deal for me. I am scheduled for prophylactic nipple sparing double mastectomy in November with TE and silicone implants. Because my husband and I already had two big trips scheduled for early this fall, Dr. said it was no problem to wait until November. Each person is different, both in their diagnosis, and in how they approach it. Do as much research as you can, bring any questions to your doctors, and make your call after that. I decided I didn't want to wait until I did develop cancer (I'm at 40 - 50% risk factor), then have to through chemo, radiation, drug therapy, lymph node involvement, and still having to have a mastectomy. Given the opportunity, I'd rather be a previvor than a survivor! My heart goes out to all those women who didn't get that chance to "beat cancer to the punch". Best of luck as you go through this decision process.

Peregrinelady

Hi Stacey, I was actually encouraged to have a mastectomy by both my general surgeon and breast surgeon due to family history and a small satellite tumor was found next to my larger one. I had DIEP surgery, and while it is no walk in the park, I am glad that I had it.