What it's like to have a single, not double, mastectomy: 'I couldn't bring myself to amputate a perfectly healthy part of me'
When Katerine Gagnon was diagnosed with breast cancer in 2020 at the age of 42, she was told she would need a mastectomy — the amputation of her breast and removal of all of its tissue — in order to become cancer-free.
And while she could have opted to have a double mastectomy — which includes removing the healthy breast as well as hopefully preventing any future (if rare) cancer occurrence in that breast — she went with the protocol and underwent a unilateral, or single, mastectomy, just as Sarah Ferguson did recently.
"A mastectomy is an incredibly painful experience psychologically," Gagnon tells Yahoo Life. "It brings a grief that is so deep and personal that it is hard to describe. And in the end, I couldn't bring myself to amputate a perfectly healthy part of me."
When does breast cancer indicate a mastectomy is necessary?
"In general, if it's possible to do a lumpectomy, especially for early-stage breast cancer, we prefer that, because it's less surgery but offers the same long-term survival outcomes," Dr. Kelly Hunt, chair of the Breast Surgical Oncology Department at Houston's MD Anderson Cancer Center, tells Yahoo Life, referring to the excision of a tumor from the breast, rather than the removal of the breast itself. "But looking at an individual, it's not that straightforward."
That's because of all the factors that must be considered after a breast cancer diagnosis, Hunt explains, including the size of the tumor in relation to the size of the breast, if there are multiple lesions in the breast and how possible it will be for the surgeon to completely remove every bit of the tumor and leave "negative margins" with just a lumpectomy. A person may also not be a candidate for a lumpectomy, which goes hand in hand with radiation treatment, if she's already had her lifetime limit of radiation therapy.
If, for any reason, a woman is not a candidate for a lumpectomy, a mastectomy will be recommended.
When and why would it be a single mastectomy?
"I wonder why we don't ask the question the other way around: Why a double?" says Gagnon. "Why prophylactic contralateral mastectomy?"
Gagnon's question makes sense and refers to the fact that in most double mastectomy cases — probably 95%, according to Dr. Laura Dominici, a breast surgeon with Dana-Farber Cancer Institute in Boston — the removal of the second breast is being done by choice, as a preventative measure, as cancer being present in both breasts simultaneously happens "a very small percentage of the time" (that other 5%).
But it's important for women to understand, Dominici says, that opting to prophylactically remove the second breast "actually doesn't lower risk of recurrence at all, and doesn't necessarily improve the overall outcome, meaning overall survival rate."
Still, nearly half of women diagnosed with early-stage breast cancer considered having a double mastectomy, while 17% went through with it — a rate that tripled between 2002 and 2012, according to research published in 2016 (and the most recent look at this available). Why?
Reasons that women opt for a double mastectomy
"There are so many factors that go into it, so it's a really complicated decision for women and doctors," says Dominici. "The most straightforward reason is that the woman has a genetic mutation that puts her at high risk of getting a new cancer — but that affects only 5 to 10% of women who get breast cancer." Others may be influenced by having a "really strong family history" that could raise that risk, she adds.
The decision to remove both breasts, says Hunt, "has always been a very controversial area" because it's often based on women feeling like "if they've had cancer in one breast, they will definitely at some point get cancer in the other breast, so they're trying to be proactive in removing the other breast. The trouble is, women usually have a much lower risk than they may think." A local recurrence — meaning a recurrence in the breast, and not in another part of the body, as with metastatic cancer — "is not a common event," Hunt adds. Further, she stresses that mastectomy comes with a major loss of sensation that is obviously twice the loss with the removal of both breasts.
And, notes Dominici, "some studies have shown higher risk for complications [with a double mastectomy] but that's just because you're operating on double the area that you'd be operating on otherwise — and for a woman having reconstruction, that's probably more amplified ... as there are more procedures involved, especially with implants that come with a higher risk for complications."
"The biggest piece is a lot of women say, 'I don't want to go through this again' or 'I want peace of mind,' which is the trickiest one for us to address, because if you ask women about it, it's such an individual thing ... and there are no studies saying women are less anxious if they have a double. But for some it really does provide peace of mind," Dominici says.
Still, other motivations for having both breasts amputated include not wanting to deal with continued annual screenings on a remaining breast and, if the patient is going flat and not opting for reconstruction, a symmetrical appearance.
"It's just not a one-size-fits-all approach — everybody has different goals and different family history and personal history," Hunt says. "We try to spend a good amount of time with people before they decide, and ultimately, I tell the patient, it's their decision."
What it's like to have a single mastectomy
Gagnon, who opted to not have reconstruction, says she stuck with having a unilateral mastectomy because a double was not medically necessary, and because none of the reasons for removing both breasts — especially symmetry and peace of mind — resonated with her.
"Asymmetry is just a scar — no more, no less. It is a scar among many and I won't be ashamed of my cancer scars. Besides, it is not even as conspicuous as one may think. If I want symmetry, I can always use a prosthesis," she says. As for "peace of mind," she adds, "I fear that this would be setting myself up for disappointment ... I promised myself that I wouldn't use amputation as a coping strategy."
In fact, says Gagnon, she was "shocked" when her breast surgeon suggested the double mastectomy first. "She assumed that it was the obvious choice: I would want a double mastectomy because I would want symmetry," she says. "She actually had me sign two contracts — one for the single mastectomy, and one for the double — in case I changed my mind! I almost felt pressured."
Another early-stage survivor, Evangelina Bustamante Jones, 77, tells Yahoo Life that she never considered removing her healthy breast, as it wasn't suggested and at the time, which was the early 1990s, and that she “never questioned anything." She had planned to reconstruct after undergoing her single mastectomy, but her doctor wanted her to undergo chemotherapy first, which allowed her time to rethink it and change her mind.
"I wore a silicone prosthetic as soon as I could tolerate it on my flat side; prior to that, I stuffed pantyhose in my bra. My husband made sure I knew that having one breast was not an issue for him, and in fact he showed such tenderness and love, I felt confident that it was ok to have one breast," Bustamante Jones says.
However, it did take her some time to get used to it. "The day-to-day reality of having one breast was just another thing to accommodate," she adds, "constantly checking my [fake] boob to make sure it was in the right place."
A recent discussion thread in a private Facebook group for breast cancer survivors delved into how women made the personal decision to have a single vs. double mastectomy. Among the nearly 200 commenters, most opted for a double, citing "symmetry" and "peace of mind," while one woman said it was because "cancer in family both sides of parents father passed away from cancer 4 aunts 1 maternal 3 paternal did not want any further surgeries just wanted to enjoy my life."
Others explained why they kept their healthy breast.
"Honestly at the time it all went so fast that I never even gave thought to a double. 4 years out and no regrets being a unicorn," noted one woman, using the nickname (along with "uniboob") that some use after having had a single mastectomy. "I wear a weighted prosthetic and don't find it heavy or uncomfortable." Another said, "I had a single, as there was no indication of cancer in the other breast, and I tested negative for genetic markers." Yet another woman noted, "My chance of cancer in the other breast is about 1% per year. I can live with that. I've read a lot about life as a unicorn, and I think I'm up for it."
Jenny Beaupre of Illinois, 44, was diagnosed in 2020 with stage III triple-negative breast cancer. She tells Yahoo Life, "The doctors talked to me about all my options and treatment. For them it wasn't necessary to do a double mastectomy, and I was fine with that. For me, I just wanted to remove the cancer in the fastest, simplest way possible."
Beaupre had a unilateral mastectomy with no reconstruction, and keeping her other breast, she explains, "allowed me to hang on to the last bit of femininity that I had. Like, I had a physical memory left on me as to what I used to look like. Boob would stick with me as long as possible, cheering me on through treatment and sickness. And it's an attention-getter. I didn't and don't try to hide it through clothing, so one look at me, you know exactly what I've been through."
Since her initial diagnosis, Beaupre's cancer has become metastatic, but "Boob is still here with me," she says with gallows humor, "looking on with its one eye."
Gagnon, who has been pleased with her decision, has advice for other women in the same position: "The mastectomy may feel like the most irremediable thing that could happen to you. In truth, you will find that there are so many possibilities of reinvention as a flat or half-flat woman," she says.
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