My brca gene was negative - still had a double. I agree with you @A MyBCTeam Member - the doctors say there is no difference in risk of recurrence but just doesn’t make sense. If the breast tissue isn’t there - how is it going to come back in the breast tissue?? ( clearly skin and chest wall still a risk ....) as for the Jolie effect- what happened when Angelina announced to the world she was prophylactically removing both breast because she had the Brca gene. She did not have breast cancer like the rest of us. I think doctors need to make the distinction between the women that rushed and wanted their breasts removed due to Angelina and the brca gene risk and the women that actually cancer in a breast. Besides who wants to be lopsided? Losing one is hard enough - but at least if you take both it is easier on you emotionally and to find clothes and bathing suits and bras. Women worry about the symmetry of the breast even with out cancer - why wouldn’t we want the same after going through cancer?? They dont look at our quality of life and emotional well being and self esteem when they want to disfigure us even more by taking one.
I also don’t agree with “tumor boards” making health and life decisions about our body. They don’t have to live in this body going forward. Recommendations based on science and research is one thing but to decide one or two of offensive.

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A MyBCTea...

Why do you want a bilateral mastectomy (BMX)? Do you carry a gene mutation such as BRCA1 or 2, PALB or CHEK2 that would make a recurrence much more likely?. I too had Stage IA in my R breast. But I learned from my surgeon (who is a pioneer in skin-and-nipple-sparing mastectomy) that the recurrence risk with a BMX is not zero--it's 2%. With a lumpectomy+radiation, it's 4%. Sounds like double the risk, right? Not so fast. What iced it for me were the graphics--silhouettes of 100 women with only 4 of them highlighted. My surgeon was delighted when I told her I'd chosen lumpectomy + radiation. BTW--the survival rate for both options is...IDENTICAL!

If you want a BMX for "peace of mind," know that's illusory. You've been diagnosed with breast cancer--the "peace of mind train" has forever left the station, as it has for all of us. You'll get "scanxiety" before every mammo, but eventually it gets less & less each year. There are thousands of women who had BMXs and still had recurrences, even metastases (it's impossible to remove all the tissue--cancer cells can remain in the chest wall); and just as many if not more had lumpectomy+rads and never recurred.

You can always go back and get a mastectomy (UMX or BMX). But once a breast is gone, it's gone. A reconstruction--even made from your own fat & muscle--will never feel the same to you or react the same way as a natural breast, no matter how convincing it may look. And as I pointed out above, mastectomy is not a guarantee against recurrence.

BTW, it's not up to your hospital--it's between you & your surgeon (and maybe your insurer, but usually they'll heed your surgeon).

My breast surgeon (and NorthShore Evanston Hospital/breast center/Kellogg Cancer Center) are part of the Univ. of Chicago medical school--and affiliated with the Mayo Clinic. The data to which I referred came from a "decision tree" Mayo study in which I participated--I was given handouts to read and took an interactive computer presentation.

My surgeon is Katharine Yao; her partner is David Winchester. They were also among the first in the nation to use sentinel node biopsy when all the old-school surgeons insisted on doing axillary dissections of at least the entire first layer. My radiation oncologist Dr. Shah had just finished participating in a study of 16-treatment hypofractionated (stronger) radiation targeted just to the tumor bed in women >age 60 with Stage IA Luminal A breast cancer--as opposed to the standard 33-treatment whole-breast protocol; I was a candidate and I'm glad I did the short, targeted version. And OncotypeDX revealed that for me, chemo would be unnecessary or even cause more harm than good.

I've always been busty (was in a D cup by 9th grade, a G during pregnancy, and my current bra size, even after lumpectomy, can be mistaken for really lousy arena rock concert seats). Unless my cancer were extensive or multifocal, I would not be comfortable losing both breasts, especially since I have the waistline of Winnie the Pooh.

Major surgery is major surgery. Mastectomies are longer, more painful. require drains and usually overnight stays (drive-through MXs are damn cruel for the patient), take longer both under general anesthesia (a risk in itself) and to recover, and have a higher rate of complications--whether or not reconstruction is chosen. I'm putting myself under the knife as seldom as necessary except to save (or meaningfully extend) my life or quality of life. Your mileage may vary, as the fine print in the auto ads say.

20 years ago even DCIS patients got chemo and bilaterals with full rads, no ifs ands or buts; and tamoxifen if ER+ regardless of menopausal status, because AIs were only for bodybuilders and infertility patients. I am willing to take advantage of progress. Our instinct when we hear "cancer" is to "throw everything in the book at it" or "do everything we can/possible" Sometimes we need instead to step back and "do everything we should/necessary."

I guess the next question would be “why not”? When you look at the radiation risks and long term side effects and issues with radiation - my goal was to avoid it at all costs
( especially for those that want reconstruction- radiation really wrecks havoc on reconstruction )

Not everyone wants reconstruction- studies show majority of women dont reconstruct - therefor skin and nipple sparing mastectomies are kind of useless.

As for illusionary - do you have the studies showing stats in relation to lumpectomy and radiation and never having recurrence? I’m always intrigued to read those.

Some women just have different priorities when it come to cancer and boobs and reconstruction as well as multiple surgeries and recovery time over and over.

There are woman that can absolutely not imagine not having breasts. Reconstructed or even just lumpectomy after cancer. They will do anything to keep them in some form at all costs.

There are just as many women that their priority is just being grateful to be alive and healthy. No boobs or radiation are worth so much surgery and recovery and the risks and complications that are associated. Who really wants to go back and do surgery all over again? More time off work - more $$ either being spent or not being made. Once a breast is gone / it is gone ... yes. But maybe just maybe some of us are ok with that. I know I am. I have never had a single regret. I wanted a bilateral and that that what I got. I’m not worried about heart and lung damage or skin cancers in the future from radiation. That is peace of mind for me.

The UK has a different health system than we have in the states. The decision isn’t always left up to the patient. We are lucky that it is different here in the US.

Yes, I am in U.S. so did not have a problem. Lucky me they passed the law that insurance had to pay for ultrasounds for dense breasts or they would have not found my ILC.