Star Mackenzie Burruto had just gotten off the phone when she felt a large lump in her right breast. Her mom had just returned from her yearly mammogram, a screening measure required since she’d fought ovarian cancer almost 20 years before. Talk of the mammogram prompted Burruto to do a self-exam.
“I always say my mom’s mammogram saved my life,” she says. Burruto saw her gynecologist and had a mammogram, an ultrasound and a biopsy the next day, which confirmed she had stage 2 cancer. But because of Burruto’s age — she was 36 years old at the time — and a strong family history of cancer, doctors also recommended genetic testing to see if she had a hereditary form of the disease, associated with mutations of the BRCA1 or BRCA2 genes, before making any treatment decisions. The results came about two weeks later, and they were negative, but by then Burruto had already made up her mind about her course of treatment.
“Prior to being recommended for testing and basically as soon as I was diagnosed, I made the decision to have a double mastectomy, even though I only had cancer in one breast. Even when my test came back negative, I did not change my mind,” Burruto says.
Due to the size of the tumor, doctors had advised a mastectomy — the complete surgical removal of the breast. This would be followed by eight cycles of chemotherapy (four cycles each of two combination regimens), a one-year course of the drug Herceptin (because the tumor was positive for the human epidermal growth factor receptor [HER2], a protein that is overexpressed by some breast cancer cells), and a 10-year course of tamoxifen, which blocks the effect of estrogen in the body that otherwise could fuel breast cancer. However, the choice to have a double mastectomy — the removal of both breasts — was hers to make.
Although Burruto did not test positive for certain mutations linked to breast cancer, her doctors believe that her family history suggests a hereditary component to her disease — maybe even a mutation that hasn’t been identified by scientists yet. After all, dozens of inherited genes are already known to increase a person’s risk for developing breast cancer — among the most commonly known being mutations in the BRCA1 and BRCA2 genes — but additional genes that elevate a person’s risk of getting the disease are likely to be found. In fact, many physicians now conduct panel testing that looks for a variety of mutated genes that can be associated with breast cancer; for women under age 35 who have the disease, experts recommend also testing for a p53 mutation, which suggests that the disease will be aggressive.
The risk of developing cancer in the other breast was not one Burruto was willing to take.
“I just wanted to get all possible cancer-causing tissue out and be done with it,” she says.
Burruto’s treatment plan is illustrative of just how personalized breast cancer surgery has become. It also reflects just how much weight a patient’s personal preference carries in the treatment decision-making process.
“For many women, there may be more than one right option,” says Frederick M. Dirbas, associate professor of surgery at the Stanford University Medical Center in Palo Alto, Calif.
A mastectomy is recommended when there is a large tumor, if the cancer has spread beyond a single mass or when early-stage cancer exists in multiple locations. A mastectomy is also recommended if cancer returns after a lumpectomy and radiation. Many women who opt for double mastectomy have reconstruction, which means additional surgery and recovery times.
A lumpectomy — also known as breast-conserving surgery, wide local excision or partial mastectomy — involves surgically removing the cancer along with a margin of normal tissue that encircles the cancer. A lumpectomy is an option when the cancer is localized to one area of the breast, or sometimes if a tumor that started out larger has shrunk after pre-operative (neoadjuvant) treatment with chemotherapy or hormone therapy.
Most of the time, a lumpectomy will also be followed by radiation therapy to the remaining breast tissue. And, because there’s always a chance the cancer can recur, women who have a lumpectomy must undergo increased surveillance, including more frequent mammograms, followed by biopsies to investigate any suspicious findings.
Dirbas says women with breast cancer are “given a lot of leeway” to choose between the two procedures because the outcome is the same.
Studies show that the rates of survival following lumpectomy and radiation are just as high as following mastectomy. And while there is a slightly higher rate of cancer recurrence after a lumpectomy than a mastectomy, the risk of cancer spreading to other organs is the same for both procedures.
Recovery times are different for the two procedures, though. Women who undergo lumpectomy can often go home the same day or the day after, where they will spend several days recuperating. A mastectomy typically requires two or three nights in the hospital and a few weeks of recovery time at home — longer if reconstruction has been done. Another lingering effect for some women who choose lumpectomy is that the ongoing surveillance that follows the procedure creates anxiety for them.
Not so for Sakura Toyama, who was 34 years old when she was diagnosed with stage 2 breast cancer. The small size of her tumor made her a candidate for a lumpectomy. While a mastectomy was “theoretically an option,” it was not one that Toyama considered.
“I wanted to have real nipples and breastfeed if I decide to have kids,” she says.
That can be possible after lumpectomy, although some women may not be able to breastfeed on the side where the lumpectomy was done, depending on the extent of surgery and location of the tumor.
Despite the abundance of research showing no survival difference between a lumpectomy followed by radiation and mastectomy, there’s been an uptick in the number of women who elect to undergo the more aggressive form of surgery. In fact, according to a 2013 study of women with stages 0, 1 and 2 breast cancers who were eligible for lumpectomy, rates of contralateral mastectomy (a double mastectomy in which only one breast has a tumor and the other is cancer-free) increased from 22.5 percent in 2004 to 51.7 percent in 2008.
A very large study of women with stage 0 to 3 cancer in one breast, published in 2014, found smaller percentages of women choosing mastectomy, but also a rise in the trend. According to that study, the number of women who chose double mastectomy increased from 2 percent in 1998 to 12.3 percent in 2011. The increase was even larger among women younger than 40.
A similar trend has been documented in men with breast cancer. A study of more than 6,000 men who had the disease in one breast and were prescribed surgery (mastectomy, since lumpectomy is not often possible in men) found that, in 2004, about 3 percent of these patients opted to remove both breasts. In 2011, 5.6 percent of such men made the same choice.
The reasons for the increase remain unclear. Some doctors point to a rise in insurance coverage for breast reconstruction and advances in the techniques that make mastectomy a more appealing option. Others point to celebrities, such as talk show host Giuliana Rancic, who have advocated for the more aggressive approach in interviews. Other commonly cited reasons include more awareness of inherited susceptibility to breast cancer, especially among younger women, leading to higher rates of genetic testing. Further, while mastectomy has come to be more accepted in American society, a dislike of ongoing screening to look for cancer seems to have grown.
Whatever a patient’s reasons, most “understand it’s an extremely personal decision,” says Heather Allen, a medical oncologist who specializes in the treatment of breast cancer at Comprehensive Cancer Centers of Nevada in Las Vegas.
“Many women have a fear that a new second breast cancer might develop in that breast, even if the chances of that are extremely low. Other times patients come into the situation concerned about radiation and want to avoid it,” Allen says.
These and other personal beliefs can make an already difficult decision more complicated for some women, says Allen, “especially when considered alongside other factors, such as a person’s medical history, family history or the biology of the cancer.”
In addition to a lumpectomy or mastectomy, doctors often remove one or more lymph nodes to determine whether the cancer has spread beyond the breast. This procedure is called an axillary node dissection.
During an axillary node dissection, typically six or more lymph nodes under the arm are removed and sent to a lab to be checked for cancer. Although this is a reliable way to check the extent of your cancer, recovery can be challenging, particularly for women who develop an abnormal and painful buildup of fluid, usually in the arm, called lymphedema, which can be either temporary or permanent.
Though there is no cure for lymphedema, it’s possible to reduce the effects of this condition through physical therapy, skin care (to prevent infection), exercise, learning to manually drain the lymph nodes and other preventive measures.
Other side effects are possible, too. Some women have pain after breast surgery that continues indefinitely, especially if they’ve also undergone a full axillary node dissection. Known as post-mastectomy pain syndrome, this side effect brings pain in the chest wall and possibly the shoulder, arm, scar or armpit, along with tingling in the arm.
Due to nerve damage, sensations of numbness, sharp pain in specific locations or severe itching may also arise after these treatments.
Though some women with breast cancer can be treated with surgery alone, others will receive a combination of surgery, radiation, chemotherapy, or targeted or hormonal therapy. When given before surgery, these treatments are called neoadjuvant therapy; when given after, they are referred to as adjuvant therapy.
Doctors often recommend neoadjuvant therapy that includes chemotherapy or hormonal drugs for larger tumors or those that are growing more quickly.
“Sometimes neoadjuvant therapy can change a woman’s surgical options,” Dirbas says.
For some women, neoadjuvant therapy shrinks the tumor to a size that makes it removable by lumpectomy instead of mastectomy. And, in some cases, neoadjuvant therapy shrinks the tumor so much that there is no remaining cancerous tissue in the breast or lymph nodes at the time of surgery. If the lymph node shrinks or goes away, a sentinel node biopsy can be done; if the node is negative for cancer, no axillary dissection or any further surgery needs to occur — resulting in faster recovery and a lower risk of lymphedema.
Adjuvant therapy is given to decrease the chance of the cancer coming back or spreading. Whether adjuvant therapy is needed depends on the chance that any cancer cells remain in the breast or the body after surgery, and an estimation of how much a specific therapy will lower the risk of recurrence.
“If it is a larger tumor or if the cancer has spread to lymph nodes, the chance that cancer will come back in the future is greater,” says Dirbas. The tumor size, involvement of nodes, grade, status of hormone and HER2 receptors in the tumor, and, in some cases, gene expression testing are used to determine if therapy is needed and which specific drugs should be used.
Allen says it’s important to remember that, while there are no wrong decisions, the best ones are “informed choices” made in partnership with doctors. Her advice to women diagnosed with breast cancer? “Understand your options and know why you’re making the choices you’re making.”