Difficult Decisions – Women Grapple with New Perspectives on Mastectomy

Fear is motivating many women with early-stage breast cancer to undergo a double mastectomy. But although the number of females choosing this option is on the rise, a new study published in the Journal of the American Medical Association, or JAMA, shows it does not lower the risk of death in patients with unilateral breast cancer, or cancer in one breast.

In fact, the results of the study, which was conducted at Stanford University School of Medicine in California and followed 189,000 women with unilateral breast cancer for more than a decade, shows a mastectomy offers no benefit in terms of survival when compared to breast-conserving therapy with radiation. Surprisingly, however, the authors reported the highest rate of mortality occurred in women who had a single mastectomy, compared to lumpectomies and double mastectomies, and stated that their research confirms studies in the past that show the least aggressive option is the best choice for most patients.

But the decision is ultimately up to the individual, and today, more women are faced with difficult choices as sophisticated testing and radiological advances lead to an increase in diagnoses of early-stage breast cancer.

“The harder we look, the more we find; we now know that about 11{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of females will get breast cancer,” said Dr. Eric Stanelle, a general surgeon at Cooley Dickinson Medical Group Surgical Care in Northampton.

Helen Perakis agrees. “People don’t realize how common breast cancer is. Everyone needs to know, because it will ultimately affect someone near and dear to you,” said the plastic and reconstructive surgeon from Cooley Dickinson Medical Group Plastic Surgeons.

In fact, many young women are taking a proactive stance and getting tested for a BRCA gene mutation if they have a strong family history of breast cancer, because the mutation increases their risk of developing the disease, along with ovarian and other types of cancer. And although a woman diagnosed with cancer in one breast has only a small chance of it reoccurring in her other, non-cancerous breast, many women fear the disease will return.

“Many patients tell me they want peace of mind; they don’t want to worry about a reoccurrence in their other breast, so they ask me to remove both breasts,” Stanelle said. “Their fear and anxiety is real, but so far we haven’t seen any survival benefits for women who have a prophylactic contralateral [double] mastectomy.”

Surgical oncologist Holly Mason cites similar requests at Baystate Medical Center in Springfield. “Many of the women we see who have been diagnosed with breast cancer are concerned about the future risk of breast cancer in the other (non-affected) breast and, therefore, are asking about the double mastectomy as a way to improve survival,” the director of Breast Services said in a statement on the hospital website. “As evidenced in this study, as well as in other recent studies, this is not the case. For the individual patient, optimizing treatment of the cancer that we know about now (and not a potential future cancer) is the treatment that will improve survival.”

However, Perakis believes it’s important to consider the psychosocial effects of a diagnosis, and says that, although statistics play a role in decision making, there are many factors that affect a woman’s choice.

“Everyone has the right to know the statistics, but women need to make their own decision on how to proceed,” she told HCN. “A woman who has had breast cancer in one breast has a 1{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} to 2{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} chance per year of developing a second breast cancer in her opposite breast, if she has no other risk factors.

“But even though these chances are slim, many women do not want to live with the anxiety of developing a cancer on the contralateral side,” she went on, adding that breast reconstruction is covered by insurance in Massachusetts, which is not the case across the country. “People are still fighting for this, and the American Society of Plastic Surgery has a campaign to raise awareness about breast reconstruction for women.”

Still, having a double mastectomy is a serious decision, and an article published in last month’s edition of the Annals of Surgical Oncology states that removing a breast for no diagnosable reason confers a significant risk of complications, which can range from infection to hematoma, skin breakdown, or problems that require additional procedures.

“Research shows that one of out of every eight women who have a double mastectomy will have complications in the prophylactic mastectomy side — the breast that had no cancer,” Stanelle noted as he spoke about the research.

Mason agrees. “We’re seeing data that shows that the complication rate — the risk of bleeding, infection, wound breakdown, or need for reoperation — is higher in patients undergoing the double mastectomy than in patients undergoing breast conservation or a unilateral mastectomy. In terms of breast-cancer treatment, this can mean a delay in the start of the other treatment that is absolutely necessary to control the breast cancer, such as chemotherapy or radiation,” she said.

The increased demand for double mastectomies runs counter to medical advances that have allowed doctors to reduce the trauma and mutilation women suffered in the past after being diagnosed with breast cancer.

Successful surgery for the disease was first documented in the 1890s, when two prominent physicians, including one at John Hopkins Hospital in Baltimore, reported that radical mastectomies had eliminated breast cancer in several of their patients. It soon became customary to perform the surgery, and although many women died from complications or were left with chronic pain and swelling, for many decades radical mastectomy was considered the only viable option.

“Surgeons would remove the breast tissue, all of the lymph nodes under the armpit, and the underlying muscle of the chest wall,” Stanelle explained.

However, the surgery was disfiguring, and questions began to surface as to whether it was necessary to do so much, which led to the modified radical mastectomy, in which surgeons removed only the breast and a portion of the lymph nodes under the arm.

“After research showed that doing less didn’t change the survival rate, doctors began questioning whether they really needed to remove the breast at all in cases of early-stage cancer isolated on one side,” Stanelle said.

As a result, lumpectomies and radiation soon became the standard of care, which pleased surgeons.

“It allowed us to stop disfiguring women, and in most cases, a lumpectomy is an outpatient procedure with radiation done later, over a period of four to six weeks,” Stanelle said, explaining that the tumor is removed in its entirety, then radiation follows in an attempt to sterilize the breast and eliminate any microscopic disease that can’t be seen.

However, Perakis says that many people mistakenly believe there is no need for reconstruction following a lumpectomy. Some women want or need it, depending on the size and location of the tumor and how extensive the surgery is, she said, “but women today have many options, and reconstruction continues to improve.”

Stanelle agrees and says advances in reconstruction that result in natural-looking breasts have been a persuading factor in the increase in requests for double mastectomies. But there are also decisions to be made about that surgery, which can include cosmetic factors.

“Reconstruction is easier in bilateral mastectomies than unilateral mastectomies because you don’t have to match the breast to the other side. But there are different ways to do the surgery,” Perakis said.

Implant-based reconstruction is the most commonly chosen procedure. Perakis said tissue expanders are placed under the pectoralis muscle immediately following a mastectomy, and the tissue expander is inflated with saline solution.

After the surgery, the patient returns to the plastic surgeon’s office on a weekly basis, and the expander is slowly enlarged by injecting saline into it, until it reaches the desired size. “At that point, a second surgery is scheduled, which includes exchanging the tissue expander for a permanent implant, which can either be saline or silicone gel. Following these surgeries, there are other procedures which are also performed that include creating a nipple and tattooing an areola,” she said. “Touch-ups for contouring defects can be performed with fat grafting, where fat is liposuctioned from the abdomen and placed around the implant to better contour the newly created breast.”

Another option is for a woman to use her own tissue and skin, which is known as an autologous reconstruction. In this procedure, the excess skin and fat from the woman’s abdomen is utilized to create a new breast. But this procedure carries more risks, including the fact that the woman is under anesthesia for a longer period of time.

“The surgery is riskier and more complicated and involves harvesting a whole area of skin, fat, and sometimes a little bit of muscle all based off of one blood vessel, which needs to be connected to a blood vessel in the chest under a microscope,” said Perakis. “There is a chance that the entire reconstruction may fail, which is why the patient is closely monitored. If the blood vessels that connect the new tissue to the chest fail, the patient must go back to the operating room. These are all reasons that the majority of women choose implants over using their own tissue. However, doing nothing is also an option.”

Still, reconstruction has advanced significantly today. “Things only continue to get better,” Perakis said.

Although double mastectomies are recommended for some women, Stanelle said this usually occurs only if they have a strong family history of breast cancer and/or a BRCA gene mutation. Although it does increase these individuals’ survival rates, having a double mastectomy does not affect the lifespan of other women with breast cancer.

But ultimately, the choice is up to the patient. “Each woman needs to make an informed decision, and for some, the risks and complications of a double mastectomy may be worth it compared to dealing with the psychological factor of worrying on a daily basis that the cancer will reoccur,” Perakis said.

Still, the rise in demand for surgery that it is not medically warranted has led the authors of the JAMA study to say it is critical to learn more about why women choose this option, so physicians can communicate more effectively about the associated risk factors.