By Ricki Lindsay
Long considered a symbol of beauty, sexuality and motherhood, women’s breasts have been glorified throughout the ages. So it comes as no surprise that the specter of losing one or both breasts to cancer affects women on a multitude of levels.
In Angelina Jolie’s case, both her mother and aunt had been stricken with the disease and had died at young ages. That, and a positive test for a genetic mutation, put the actress in a very high-risk category. (AP File Photo)
Some women have no choice in the matter: One or both cancerous breasts have to be removed to save their lives. But the option for elective, pre-emptive surgery to remove breasts ahead of any diagnosis is an entirely different decision, fraught with emotional, medical and ethical concerns.
The pre-emptive surgery option has been around for years, but it wasn’t until a highly publicized announcement by superstar Angelina Jolie in May 2013 that a national dialogue about breast cancer risk, genetic testing and pre-emptive mastectomies truly began.
Jolie, who did not have breast cancer but carries a mutation in a gene called BRCA1 (for breast cancer gene 1) also had an extensive family history of breast cancer. Her mother and aunt both died of the disease at a young age. After genetic testing and counseling, the star elected to undergo a prophylactic double mastectomy — surgical removal of both breasts — followed by reconstructive surgery.
She also had both of her ovaries removed. Carriers of the BRCA 1 gene have significantly higher rates of ovarian cancer — which is far harder to detect than breast cancer, and often is in an advanced stage when it is discovered.
Jolie’s story isn’t particularly unusual; risk-reducing double mastectomies are not a new treatment option. But the nipple- and skin-sparing technique that allowed her to keep those parts of her breasts intact is relatively new. The procedure results in a more natural- looking breast.
“Sometimes, that makes the tough decision to proceed with the mastectomy — elective or not — just a bit easier for a woman,” said Alissa M. Shulman, a board-certified Sarasota plastic surgeon and breast cancer reconstruction specialist.
According to the National Cancer Institute, “risk-reducing” surgery is considered an appropriate cancer prevention option for women at the highest risk — those who carry a gene mutation associated with breast cancer, or who have a clinical or medical history that puts them at very high risk.
Women who are not at a very high risk of breast cancer — but are considered as being at some increased risk of the disease — can choose frequent and more detailed screenings or preventative treatment with drugs such as tamoxifen.
The decision to remove a healthy breast when cancer has been detected in only one side is highly individual, said Russell Novak, a board-certified general surgeon in Sarasota who also specializes in breast cancer surgery.
Many patients with cancer on one side simply don’t want to worry about having it come back in the other breast. In their quest for a breast-cancer- free future, they opt to have both breasts removed.
“Women with cancer in one breast have a slightly higher risk than the general population that they will get it in the other,” he noted. “An increasing number of those patients just don’t want to worry, so they make the decision for themselves to eliminate that possibility.”
Janet Cosby is thankful she listened to the voice in her head that drove her to seek a second opinion.
A year ago the Sarasota mother and grandmother had undergone two surgeries with three lumpectomies at a medical facility in the Tampa area before finding her way to Sarasota surgeons Novak and Shulman.
In the first procedures, the Tampa surgeons were not able to get “clear margins” — meaning cancerous tissue could still be lurking in her breasts.
“I wasn’t offered any further treatment or options, other than to wait six months and come back for more tests,” the retired nurse recalled. “The truth is, I just didn’t feel comfortable knowing that they couldn’t get clear margins and being told to just wait and see.”
The uncertainty was even harder on Cosby’s adult children.
“I hated seeing what they were going through, each time I went through the lumpectomy process and there was no definitive information,” she recalled. “I also have an autoimmune condition, and knew that wouldn’t make decisions down the road any easier, so I sought out another opinion.”
Novak’s recommendation was that a mastectomy should be performed on her right breast where the previous lumpectomies had been conducted. Cosby also decided to have her left breast removed — which had not shown any signs of cancer — as a risk-reduction measure.
She underwent a nipple-sparing double mastectomy in March. Tissue expanders were inserted by Shulman at the same time as the first stage of her reconstruction, which she continued in August.
To her shock, invasive cancer was found in the supposedly healthy left breast.
Fortunately for Cosby, her sentinel lymph nodes were clear, so the cancer was caught before it had started to spread.
“Every story is different,” Cosby said. “But part of my decision was based on not wanting to play wait and see; to wait for the other shoe to drop, and having a return of cancer constantly on my mind. I didn’t want to get cut up a piece at a time and eventually have to have a mastectomy anyway. This was the best option for me.
“Now I have absolute peace of mind,” she added. “I don't feel ‘less than’ I did before; I feel better than before and have had a great result. There is nothing stopping me now.”
Risks should weigh heavy in decisions
When Angelina Jolie went public with the announcement that she’d elected to have both breasts and her ovaries removed — she had a very high-risk profile for cancers in those organs — the announcement was met with as much controversy as it was confusion.
Both reactions are due in part to the fairly rare circumstances under which such radical operations would be needed.
In Jolie’s case, both her mother and aunt had been stricken with the disease and had died at young ages. That fact, and a positive test for a genetic mutation that is strongly associated with breast and ovarian cancer, put the actress in a very high-risk category.
Fortunately, only a very small percentage of the population is at risk for this combination of factors.
For some of these women, the data support the decision for a prophylactic, or risk-reducing mastectomy, says Catherine Lee. Lee is an associate member of the Comprehensive Breast Program at the H. Lee Moffitt Cancer Center and Research Institution and an associate professor of surgery at the University of South Florida Morsani School of Medicine, both in Tampa.
“For women in their 30s or 40s, with the BRCA 1 or BRCA 2 genetic mutations and a strong family history of cancer, who are in otherwise good health, preemptive mastectomies are a reasonable decision,” she said.
“But I have women coming in every week who do not fall within those parameters, and for them, such an operation may not be medically necessary. There are many factors that alter someone’s likelihood to develop breast cancer.”
Some women’s eagerness to opt for the surgery concerns Lee.
“My responsibility as a surgeon is to remind a patient that all operations, elective or not, carry risk,” She said. “For most women, I can’t recommend removal of a healthy breast — but I don’t sit in their chairs.”
One reason to have an elective total mastectomy is when one breast has already been or is going to be removed — for better reconstruction results later.
“They feel the symmetry will be better, and that is a big driver for their decision-making,” Lee said.
For others, it is the peace of mind.
“I remind these patients that the risk of developing cancer in the other breast is very low, but it is never a zero chance, with or without that breast. For them, the peace of mind is enough and that is what they need,” she said.
This is a discussion taking place in many physician offices, hospitals and medical centers throughout the county.
“There is a lot of conversation about ethical responsibility and what is best for the patient,” Lee said. “My responsibility is to give her all the data so that she can be comfortable with her options. Almost always, her decision resonates with me. It’s a highly individualized decision, and I encourage women to get a second opinion from outside of our group.'
Radical surgery is not always the first choice, the surgeon emphasized. The outcomes from breast cancer treatment have improved dramatically over the last five to 10 years at Moffitt, she added, with constant improvements in therapy.
And breast cancer risks should be weighed on the same scale that applies to other cancers, Lee said: “We see people all the time who are very predisposed to cancer of one kind or another — but we rarely go in and remove a healthy organ. Fundamentally, that goes against what we are taught in medical school, which is, ‘First, do no harm.’”
