October 3, 2023

What It’s Like To Have A Single, Not A Double Mastectomy


Women share what it’s like to have a mastectomy. (Design by Victoria Ellis and Getty Images)

When Katerine Gagnon was diagnosed with breast cancer at the age of 42 in 2020, she was told she would need a mastectomy — the amputation of her breast and the removal of all tissue — to become cancer-free.

And while she could have chosen to have a double mastectomy — which included removing the healthy breast and hopefully preventing future (if rare) cancer in that breast — she went with the protocol and either had a unilateral or single mastectomy. , just like Sarah Ferguson did recently.

“A mastectomy is an incredibly painful experience psychologically,” Gagnon tells Yahoo Life. “It brings with it a sadness so deep and personal it’s hard to describe. And in the end I couldn’t bring myself to amputate a perfectly healthy part of myself.”

When does breast cancer indicate that a mastectomy is necessary?

“In general, if it’s possible to do a lumpectomy, especially for early-stage breast cancer, we prefer it because it’s less surgery but offers the same long-term survival outcomes,” Dr. . Kelly Hunt, chair of the Breast Surgical Oncology Division at the MD Anderson Cancer Center in Houston, tells Yahoo Life, referring to cutting out a tumor from the breast, rather than removing the breast itself. “But when you look at an individual, it’s not that simple.”

That’s because of all the factors that need to be considered after a breast cancer diagnosis, Hunt explains, including the size of the tumor in relation to the size of the breast, whether there are multiple lesions in the breast, and how likely 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, if she’s already had her lifetime limit of radiation therapy.

If a woman is not a candidate for a mastectomy for any reason, a mastectomy is recommended.

When and why would it be a single mastectomy?

“I wonder why we don’t put 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 the majority of double mastectomy cases — probably 95%, according to Dr. Laura Dominici, a breast surgeon at the Dana-Farber Cancer Institute in Boston — the removal of the second breast of choice is done, as a preventive measure, since cancer present in both breasts at the same time occurs “a very small percentage of the time” (that other 5%).

But it’s important for women to understand, says Dominici, that choosing to prophylactically remove the second breast “doesn’t actually lower the risk of recurrence at all and doesn’t necessarily improve the overall outcome, that is, the overall survival rate.”

Still, nearly half of women with early-stage breast cancer considered 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 women choose a double mastectomy

“There are so many factors involved, so it’s a very complicated decision for women and doctors,” says Dominici. “The most obvious reason is that the woman has a genetic mutation that puts her at high risk of developing a new cancer – but that only affects 5 to 10% of women who develop breast cancer.” Others may be affected by having a “really strong family history” that could increase 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’s sense that “if they’ve had cancer in one breast, they’ve definitely had cancer in one breast at some point.” will get the other breast.” , so they try to be proactive about removing the other breast. The problem is that women usually have a much lower risk than they might think.” A local recurrence – that is, a recurrence in the breast, and not in another part of the body, as with metastatic cancer – “is not very common ” adds Hunt. She also emphasizes that mastectomy is associated with a great loss of sensation that is clearly twice as great as with removal of both breasts.

And, Dominici notes, “some studies have shown a higher risk of complications [with a double mastectomy] but that’s just because you’re operating on the dual area you’d otherwise be operating on – and for a woman undergoing reconstruction, that’s probably more amplified…because there are more procedures involved, especially with higher risk implants on complications.”

“The biggest problem is a lot of women say, ‘I don’t want to go through this again’ or ‘I want peace of mind’, which is the hardest for us to address because when you ask women about it, it’s such an individual thing … and there are no studies that say women are less anxious if they have a lookalike, but for some it really gives peace of mind,’ says Dominici.

Still, other reasons for having both breasts amputated include not wanting to deal with ongoing annual screenings for a leftover breast and, if the patient goes flat and chooses not to have reconstruction, a symmetrical appearance.

“It’s just not a one-size-fits-all approach — everyone has different goals and a different family history and personal history,” says Hunt. “We try to spend a lot of time with people before they decide, and ultimately, I tell the patient, it’s their decision.”

What it’s like to have a mastectomy

Gagnon, who chose not to have reconstruction, says she stuck with a unilateral mastectomy because a double breast was not medically necessary, and because none of the reasons for having both breasts removed — especially symmetry and peace of mind — resonated with her.

“Asymmetry is just a scar – no more, no less. It’s a scar among many and I won’t be ashamed of my cancer scars. Besides, it’s not even as noticeable as one might think. If I want symmetry, then a using a prosthesis,” she says. As for “peace of mind,” she adds, “I’m afraid I’d be disappointed by this…I promised myself I wouldn’t use amputation as a coping strategy.”

In fact, Gagnon says, she was “shocked” when her breast surgeon first suggested the double mastectomy. “She assumed it was the obvious choice: I would want a double mastectomy because I want symmetry,< /em>she says. “She actually made me sign two contracts — one for the single mastectomy and one for the double — just 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 was not suggested at the time, which was the early 1990s, and that she “never questioned anything” . She planned to have reconstruction after she had her single mastectomy, but her doctor wanted her to undergo chemotherapy first, which would give her time to think it over and change her mind.

“I wore a silicone prosthesis as soon as I could bear it on my flat side; before that, I tucked tights into my bra. My husband made sure I knew that having one breast wasn’t a problem for him, and in fact showed such tenderness and love, I was very confident that it was ok to have one breast,” says Bustamante Jones.

However, it took her some time to get used to it. “The day-to-day reality of having one breast was just another thing to take into account,” she adds, “constantly 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 addressed how women made the personal decision to have a single versus double mastectomy. Of 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 died of cancer 4 aunts 1 mother 3 father did I didn’t want any further surgeries, I just wanted to enjoy my life.”

Others explained why they kept their breasts healthy.

“Honestly it all happened so fast at the time I never thought of a doppelgänger. Four years out and no regrets being a unicorn,” commented one woman, using the nickname (along with “uniboob”) that some use after she had a single mastectomy. “I wear a weighted prosthesis and don’t find it heavy or uncomfortable.” Another said, “I had one, because there was no indication of cancer in the other breast, and I tested negative for genetic markers.” Yet another woman commented, “My chance of getting cancer in the other breast is about 1% a year. I can live with that. I’ve read a lot about life as a unicorn, and I think I’m ready.”

Jenny Beaupre of Illinois, 44, was diagnosed with stage III triple-negative breast cancer in 2020. She tells Yahoo Life, “The doctors talked to me about all my options and treatments. For them, there was no need to do a double mastectomy, and that was fine with me. For me, I just wanted the cancer in the fastest, simplest way possible.”

Beaupre underwent a unilateral mastectomy without reconstruction, and by keeping her other breast, she explains, “I was able to keep whatever femininity I had left. For example, I had a physical memory of what I used to do.” look. Boob would stay with me as long as possible, encouraging me through treatment and illness. And it is an attention grabber. I didn’t and don’t try to hide it with clothes, so one look at me, you know exactly what I’ve been through.”

Since her initial diagnosis, Beaupre’s cancer has spread, but “Boob is still here with me,” she says with gallows humor, “looking with one eye.”

Satisfied with her decision, Gagnon has some advice for other women in the same position: “The mastectomy may feel like the most irreparable thing that can happen to you. In reality, you’ll find that there are so many opportunities to reinvent as a flat or semi-flat woman,” she says.

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