How do you choose? Bilateral mastectomy with one healthy breast

First piece of advice-go with the surgical option that leaves you with a feeling of peace no matter if it's UMX vs BMX or what type of recon (or not) to go with. At the end of the day no one else has to live in your skin but you and that's a 24/7/365 undertaking.

My story is a little more implement in that I had cancer and radiation treatment as a child, so there was a greater risk of breast cancer for me anyway. They found calcification they wanted to do a lumpectomy on after biopsy just showed them to be calcifications. Radiologist trumped the BS and insisted on MRI first. MRI found IDC in the other breast - no lumps, not on mammo, nothing. My options were UMX on one side with lumpectomy on the other or BMX. I chose BMX as my risk was higher and already had something going on. Without those factors I believe I still would've chosen BMX as the every 6 months monitoring of the remaining breast would've been worrying and anxiety laden from that point on. I also wanted my breasts to feel the same when my DH touched them, not one responsive and the other not. Then there's the recon to try and get symmetry. BMX it was (i was able to do skin & nipple sparing) and I went with immediate DIEP flap reconstruction using my own tissue - so no implants, no capsular contracture risk, no tissue expanders or weekly fills or exchange. Just soft, warm breasts that move and look like the originals did. I went into the BMX with breast and came back out with breasts (just different stuffing).My breast were sensitive before and I have feeling over the vast majority of both breasts now, but no nipple sensation - they still respond nicely to my DH and cold though! Based on my experience I would go this same route again in a heartbeat.

I hope my story helps! Feel free to ask any questions about my decisions, the BMX and the natural tissue recon.

I agree with all above, it is your decision to make. I went back and forth, and I did ask some of my female friends what they would do in the same situation and then realized, you really can't know what to do unless you are facing it. I chose to have bilateral mastectomy for several reasons. Most importantly, I have very dense breasts and mammogram didn't pick up my fairly large tumor 6 months earlier. I felt that I would never trust a mammogram again. Second, I know me and I am a worrier. I just decided I didn't want to be going through all that scanxiety on the other breast. And finally, I wanted to have good symmetry. My PS and I discussed the options and we ended up doing a nipple sparing on the non-cancer breast. I don't have feeling there but it honestly looks fine otherwise (or I hope it does once I get my exchange surgery). I plan to get a tattoo on the other side.

Best of luck with your decision. It was a really hard one for me.

Hi Draftbaby. Always a dilemma on what to do but as Eastcoast said you really need to be at peace with the decision yourself. I had DCIS in my right breast which was diagnosed quite incidentally after I did an Ultrasound and mammogram for what I was convinced was a left breast cyst. Well turned out I was right and my left breast lump was a benign cyst, but I had bilaterally dense breasts (which doesn't make for good interpretation) and the right mammo showed up microcalcifications over a third of the breast and an mammo-guided biopsy showed the DCIS as well as atypia. My MRI showed bilateral global enhancement which radiologically is possibly a precursor for malignancy, and I have a positive Family history. All in all, this put me in a higher risk group for invasive tumour in the future, with radiology not being likely to help in my monitoring due to the MR findings and fibrocystic disease.

So conclusion after reading current guidelines and medical papers, discussing with my radiologists, breast surgeon etc, I opted for bilateral - why? I needed a right sided anyway for the DCIS since there was extensive microcalcification - also I preferred mastectomy rather than lumpectomy and radiation anyway even if there had been a discrete lump, as preferred more surgery and no radiotherapy. With regards to symmetry, I felt for me the results would be better with bilateral reconstruction as matching would have meant breast reduction and uplifting on the other side. And I felt removing both gave me more peace of mind. I couldn't live with the regular monitoring to see if something was happening on the other side even if monitoring was an option - which it wasn't really according to my radiologists. So yes peace of mind and symmetry won. 

How do I feel now? At peace. I've done what I can. I am happy with the results. I've just completed my exchange 3 weeks ago and am gradually recovering. I still think it was the right decision. I'm happy with my new twins which are slowly starting to sink into position! I had regained virtually all sensation over the skin a few months after my initial surgery in February only to lose it again with the second op 3 weeks ago! Now patiently hoping that it will come again as it did last time!

Take care and may you find peace in your decision. I think the weeks leading to the surgery and taking the "final" decision were hard. It meant (for me at least) many sleepless nights reading medical guidelines, papers etc. At the end of the day, as Eastcoast told you, the only person you need to satisfy is yourself, since you alone live with the decision 24/7, and the consequences of the decision. Feel free to pm if you need a sounding board or want to rant! 

I should add that I also wanted to avoid radiation IF possible. BMX may allow for this if clear margins are achieved and no muscle involvement, I think it was. (But there is always the possibility of radiation even with BMX.)

I went with a BMX even though I only had tumor(s) in one breast. I was given the choice of UNI or BMX and I immediately chose BMX because I did not want to have to worry about the other breast. I do not regret that decision for one second. For me, it was absolutely the right thing to do. Do I still worry? Absolutely. Because my tumor was "only" 5mm, they don't do MRI, Oncotype, PET scan, etc. My MO and breast surgeon keep telling me I am cancer-free and I am trying very hard to believe them.

I am not sure why your family would have any input as to what you do. It's such a personal decision and should be what's right for YOU, not what others tell you. As that old saying goes, "walk a mile in my shoes...". This has nothing to do with them, so they should keep their feelings, opinions, and advice to themselves.

Go off by yourself, breathe, and pray. You will find your answer and you will do what's right for YOU.

Go with what will make you feel the most happy and whole.

I had a unilateral mastectomy. My breasts were very sensitive and I knew right away that I wanted to keep my healthy breast. Being symmetrical was less important to me. 2 weeks post op, it looks like the right (reconstructed) breast will be a bit bigger and sits differently than the left. I'm OK with it so far; it's noticeable only when I'm naked. It's quite numb, but I'm still healing. I'm definitely happy with my decision to keep the healthy breast.

What surprised me most was how different the implant feels compared to natural breast tissue. It feels hard and muscular.

As for your father's comment...wow! WTF indeed.

Thought I'd chime in as I went with a single mastectomy. My breast surgeon was promoting bilateral as was the first plastic surgeon, both for risk reduction and symmetry. The second plastic surgeon pointed out that the risk was already low (and my tests confirmed) but my risk of surgical complication would double with a bilateral. I was going to need chemo and radiation regardless. Given the numbness and the feeling of having the tissue expander under my pectoral muscle (felt the muscle contract on top of my breast every time I used it) I am grateful that I decided on keeping the healthy breast. Just had my DIEP flap reconstruction last month; the symmetry isn't there yet but only I know right now. I anticipate a small lift for the healthy breast in the late spring.

The decision is 100% yours. Learn everything you can about your specific cancer, your treatment plan and reconstruction options and then make the decision. You'll know it's the right one when you feel a sense of relief upon telling your surgeon (I did).

Good luck

Axolotl, Its probably the pectorals over the silicone that are really making things feel hard. Hopefully it will soften up. I am 3 months post exchange and its just starting to not feel like I am wearing a brass bra or subcutaneous tupperware or that someone is groping me from behind.. Very uncomfortable and no one tells you to expect it. Physical therapy is helping though, for the muscles and the adhesions from the sutures etc. I could hardly lift my arms after the exchange.

For me I was very comfortable with my decision to have BMX, but I had pervasive dcis on both sides and early invasive on one. I did not want to go through the water torture of lumpectomy after lumpectomy. No chance of skin sparing anything for me. No real feeling in the breasts now (though you can feel pain and discomfort every place a bra rides. WTF? I think its the pectorals and where they connect that are the worst). Losing both breasts is like losing the volume control on sex. And the estrogen blocker makes it worse. Everything is on mute. My husband is great. He calls them "the girls" but it still sucks. And don't think BMX will save you from wearing an uncomfortable bra. I am supposed to wear full support bras every day, and I wear them to bed too because its more uncomfortable without. So far every bra is uncomfortable (I've tried alot). Hopefully things will improve, but I am told by some that it is always going to be somewhat uncomfortable.

Make your choice. Don't do it for someone else.

I was diagnosed with DCIS initially in right breast, then found an additional invasive lesion in the same breast via MRI. Even before the discovery of the IDC I had pretty much made my decision to have a bilateral mastectomy if anything additional was found. I have extensive family history and just didn’t want to worry constantly about developing cancer in the healthy breast. I too was very large busted, 34 EE. Petite body but large breasts. I too was worried about the cosmetic outcome if I chose only to do a single MX. I feel it is a valid concern, and quite frankly it’s your decision not anyone else’s. I initially had a general surgeon when we thought it to Be only a lumpectomy was needed. When the second diagnosis came the only option was a mastectomy. I asked my first surgeon what his thought was on a bilateral mastectomy and his response was “why would you want that, your other breast is healthy?” Guess what my next move was, I met with with a new surgeon who specialized in breast cancer. She was fabulous and never once questioned my decision. Turned out to be a good decision as the pathology report on the “healthy” breast discovered several areas of atypical hyperplasia which is pre cancerous cells. My advise is to trust your gut and don’t worry about others think.

Good luck with your decision.

Jada

Hi

I was unique in that I just had breast implants replaced for cosmetic reasons 2.5 yes ago. They found the suspicious pattern micro calcifications in R breast at my mammo visit in Nov. I got paperwork from I believe my insurance company stating I have very dense breast tissue. This told me that a mammogram may not find everything in the future. And the cells were ER+ PR+ The lumpectomy, radiation, then 5 yrs of the Tamoxifen were strongly recommended. I opted for NSM for both breasts. I didn't want radiation and the medication. They did not find any other cancerous tissue. I wouldn't have done anything differently. I could have done NSM on the one breast but I opted for both because of the dense breast tissue and personally I felt I would rather have both breasts reconstructed equally for best symmetry. And I did not want to go on the medication.