September 20, 2024 – Susan Derwin saw a call are available in. She had turned 60 that day, but that wasn't meant to be celebratory news.
It was her doctor's office with the outcomes of her routine mammography exam. Derwin was told that the exam found something in her left breast and that she needed to come back back for further testing.
“In my gut I was just sure it was cancer,” Derwin said.
She was right.
About two weeks later, Derwin received a call from her doctor on a Monday evening confirming that she had cancer in her left breast. The next day she met her breast surgeon.
“It all happened very quickly,” she said.
Surgery could be step one – an option she knew well after her sister's breast cancer surgery 13 years ago.
Derwin's surgeon told her that a mastectomy was the very best approach, but it surely was her decision whether she desired to remove one breast or each.
For most ladies with cancer in a single breast, a double mastectomy has never been proven to scale back the possibility of dying from the disease.
A recent study published in JAMA Oncology I actually have made this point clear. For patients with cancer in only one breast, the alternative of surgery—whether a lumpectomy or a single or double mastectomy—had no impact on the chance of dying from the disease in the following 20 years.
Derwin also knew that a double mastectomy wouldn't prevent the cancer from coming back; Chemotherapy and hormone therapy were her best possibilities for this.
But Derwin opted for a flat-closure double mastectomy, similar to her sister had.
“Once the decision was made, I never thought about it again,” she said.
Derwin is hardly alone. Many women with cancer in a single breast decide to have each removed.
In the late Nineteen Nineties, the variety of double mastectomies began to extend on this population group are still higheven after research within the late 2010s began to point out that the more extreme surgery didn't improve survival rates.
Why the apparent separation?
The decision to have a unilateral or bilateral mastectomy is more complicated than simply weighing survival statistics.
Despite this data, a double mastectomy may provide some women with a greater sense of security. For others, there are the physical, mental and financial burdens of ongoing exams and possible biopsies. And some women also prefer the aesthetic symmetry of removing each breasts.
“It can be difficult to understand why a patient would want further surgery when treatment for the cancer is not necessary,” said Dr. Seema Ahsan Khan, professor of breast surgery at Northwestern University Feinberg School of Medicine in Chicago. But “I think we really underestimate the burden of screening” and other issues, she said.
Overestimation of advantages
A significant reason average-risk patients decide to have a double mastectomy with cancer in a single breast is that lots of them overestimate their risk of developing cancer in the opposite breast.
“We spend a lot of time talking to people about it,” Dr. Laura Dominici, a breast surgical oncologist on the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston.
Women who've had breast cancer have the next than average risk of developing cancer again, and that features breast cancer. But overall, the chance of developing a brand new cancer in the opposite breast is sort of low: between 0.1% and 0.6% per yr.
A double mastectomy reduces this already small risk.
Patients also often overestimate the potential life-saving advantages of a double mastectomy. Although a double mastectomy reduces the chance of recent cancer developing in the opposite breast, the JAMA Oncology The study found that this surgery had no effect on breast cancer mortality. At 20 years, the breast cancer mortality rate was 16.7% after single or double mastectomy and 16.3% after lumpectomy.
Explaining to patients that a double mastectomy, even with a lower risk of a second breast cancer, ultimately doesn't improve survival is essential to laying out the professionals and cons, said Puneet Singh, MD, assistant professor of breast surgical oncology at The University of Texas MD Anderson Cancer Center in Houston.
Improving survival is dependent upon other aspects, including using hormone therapy, which has been shown to scale back the chance of reoccurrence and death from breast cancer in women with early-stage estrogen receptor-positive disease, probably the most common form.
There are also potential risks related to performing the more invasive procedure. Some data suggest that double mastectomies are related to the next rate of opposed events.
“The longer the procedure, the longer the recovery and there is a possibility of increased complications,” including infections, Khan said.
However, the information on this stays inconsistent, and other studies have found no significant differences between complication rates. Ultimately, it's breast reconstruction surgery that's more definitive increases a patient's risks for complications.
The burdens of screening
Aside from survival outcomes, a double mastectomy brings some notable advantages to patients.
Many patients view double mastectomy as a strategy to free themselves from years of standard imaging. For women with dense breasts, this will include additional screening with MRI or ultrasound.
Becky Barber, 65, says “scanxiety” was her top priority when she decided to have a double mastectomy about two years ago. Her cancer had recurred in the identical breast after a lumpectomy and radiation greater than 20 years ago.
Her original cancer was ductal carcinoma in situ (DCIS). But the brand new thing was invasive.
“A single mastectomy would have been an option,” said Barber, who lives near Raleigh, North Carolina. “But after many years [benign] Things that show up on scans – and let me tell you, a stereotactic biopsy is like torture – I just thought: I don't want that again. I was done.
Barber says her surgical oncologist didn't try to push her in any direction. Barber decided to have a double mastectomy and is happy with her decision.
“I think imaging can cause a lot of anxiety in women,” Singh said, “even if they know the risk of us finding something in the other breast is small.”
Providers likely underestimate the burden of screening, particularly for ladies who need additional screening, Khan said. There is numerous “time and energy investment, anticipation and out-of-pocket costs,” she said.
For Tarah Brown, a 42-year-old from Ventura, California, who recently underwent surgery for DCIS and stage 1 invasive ductal carcinoma, cost is a significant consideration. Instead of a “very large” lumpectomy followed by radiation, Brown opted for a single mastectomy.
But now she is fascinated by removing the opposite breast.
For Brown, the choice will rely upon her screening prospects. She has very dense breasts and says her cancer was not detected on routine mammography; The diagnosis was made only after she felt a lump and underwent a diagnostic mammogram and ultrasound.
“I think the decision will come down to: If the mammogram can't tell me if I have cancer, am I going to get an MRI every year?'' Brown said. “How expensive is it? Does the insurance pay for it?”
She has already had a biopsy of her remaining breast after an MRI of both breasts revealed an abnormality following her diagnosis.
The biopsy “showed nothing,” Brown said, but she worries that she will subject herself — and her husband and child — to this waiting game for years to come.
Other key factors
For Derwin, symmetry was a major concern when choosing between removing one or both breasts.
Derwin said her surgeon “remained very objective” and never tried to steer her in one direction or another.
At first she wanted to wait for them BRCA Test results before making a decision.
A patient's BRCA status makes a difference. In people with a known BRCA 1 or 2 mutation, studies have shown that the risk of a second breast cancer is increased by 30-40% after 10 years, and the risk appears to persist beyond that point. A 2016 Consensus statement from the American Society of Breast Surgeons recommends that women with a BRCA mutation consider a contralateral mastectomy given their increased risk of contralateral breast cancer.
But Derwin's test results were delayed, meaning she had to make a decision about her surgery before learning her BRCA status.
Derwin chose a flat-closure double mastectomy because she wanted symmetry.
Symmetry is an important consideration for many women – regardless of whether patients choose reconstruction or a flat closure.
“I definitely had patients who expressed similar preferences and values,” Singh said.
Ultimately, Derwin's decision to have a double mastectomy was a fortunate one. When the results of her genetic testing finally came in, she discovered that she carried a BRCA1 mutation.
Personalize the conversation
When Dominici speaks with patients, she first discusses how the existing cancer should be treated.
But for women with cancer in one breast, Dominici will ultimately shift the conversation to the other breast, guiding them through the data toward a double mastectomy versus a single mastectomy.
“A lot of women come in knowing what they want,” Dominici said. But sometimes understanding the evidence can move a patient in a different direction.
“There are some who say, 'I didn't know all that,' and think they don't desire a double mastectomy anymore,” she said. And there are others who listen but ultimately decide that a double mastectomy is the right choice for them.
For Singh, what matters is that this back and forth takes place. “I can provide a lot of information based on my experiences and the data available,” she said. “But what’s really important is listening to the patient, understanding where they’re coming from, and tailoring the conversation accordingly.”
Dominici agreed, adding that it is important to make scientific findings not only digestible, but also relevant to the individual – taking into account their personal values and preferences.
Beyond the hard numbers, Dominici also shares different approaches to achieving symmetry outside of a double mastectomy, which include a breast lift or breast reduction for the opposite breast.
“I really see our role as managing the information,” Dominici said. “And I think it’s important for women to be instrumental in figuring out what the right choice is.”
At the same time, women have to process a lot of information while dealing with a new cancer diagnosis.
“One thing I try to get across to people is that it’s OK if things need to slow down a little,” Dominici said. If patients feel torn about the right surgical option for them, “we may give women space to let things rest and provides them a likelihood to breathe,” she said.