'Take your time': Advice on choosing a prophylactic mastectomy

If, like me, you've discovered that you're a carrier for a genetic mutation like BRCA1 or 2 you're probably feeling swamped by numbers, medical advice, unwanted opinions and options for your next steps.

Here's my advice: take your time.

Even after you've weighed your options and chosen to get prophylactic mastectomy, the choices are overwhelming. Not all mastectomies are the same. One procedure might be better for you than another. Think of it as a choose-your-own-adventure book.

First, you have to decide your top priority. Maybe you're a masseuse who needs to minimize damage to your muscles. Maybe you're a mom to small children who needs a one-and-done surgery. Maybe you want a reduction or an increase in bust size, in an attempt to make the best of a bad situation.

Your top concern should direct your research.

The first choice is usually either using your own tissue vs. getting implants.  Tissue-based procedures, or flap procedures, take muscle and tissue from other areas of the body – stomach, buttocks, thighs, even back – to recreate breasts. Since they require essentially two surgeries due to the mastectomy site and donor site, they are more intensive as far as time in surgery and, to some extent, in recovery. In return, there's a more natural look. Flap breasts are warm to the touch, something many don't realize is lost with implants.

A cutting-edge procedure using fat transfer is emerging as another option for using one's own tissue. With this, the skin is stretched with a machine worn for hours at a time. Then, liposuction is performed (rather than surgical removal) on one area of the body and that is put into the breast area.

On the other side, implants are more commonly used by surgeons for mastectomy patients, giving more options for practitioners, but bringing with them another layer of decisions.

Traditionally, a surgeon removes all breast tissue (which, by the way wraps around your ribs and goes up to your collar bone), lifts the pectoral muscle and places an expander underneath. The surgeon then injects fluid on a regular basis to slowly expand the skin and muscle until you've reached the desired size. In a secondary procedure, the surgeon removes the expander and replaces it with an implant. Some surgeons only perform this type of procedure and some produce amazing results.

But today, there is also the option to go direct to implant. In this procedure, a breast surgeon performs the mastectomy and a plastic surgeon follows immediately with the implant, supported by a mesh cellular matrix. This 'sling' is stitched to the muscle and eventually becomes part of the body, creating a pocket and eliminating the need for expansion. This is a relatively newer procedure and not all surgeons do this. Trust me that you should not push a surgeon to perform a procedure with which he or she is not experienced.

Surgeons are also now offering over-the-muscle implants for women who perhaps can't pursue a flap surgery but want as little damage to the muscle as possible.

And if those aren't enough choices, there is also the question of the nipple – to keep it or not. For many years, the nipple was automatically discarded because it is breast tissue. But continued research points to a very small risk attached to it and an easier transition mentally for women who choose to keep their nipples. (Still, you will likely lose all feeling in your breast and your nipple, though they may still react.) The procedure I found most comforting was when the surgeon tests the breast tissue beneath the nipple during surgery, allowing them to remove the nipple if any worrisome cells are found, leaving them intact if the breast tissue is clean.

Each of these options may be right for one person and totally wrong for someone else. They say nothing about when you might get the procedure, the mental challenges involved or the question of whether or not to also remove your ovaries. But they all depend on you having confidence in your final decision and trust in your surgeons.

You must choose your own adventure.

For me, a working mother of three young children who is generally happy with my breast size and located in a central city with tons of options, the decision will hopefully be easy.  I plan to pursue a direct-to-implant, nipple-sparing procedure with the leaders in the field because I want a fast surgery and I want to wake up looking as much like 'me' as I can. But I spent two years coming to this conclusion.

Take your time. Find your path. For all that we endure, we should be as happy as possible with the results.

Katrina Altersitz Wells is an editor for medical news publications  and blogs at Curiosity Saved the Kat. 

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