Hollywood actress Angelina Jolie’s decision to have a preventive double mastectomy continues to be the topic for public debate three weeks after she announced in a New York Times editorial that she had the surgery. Jolie is hardly the first woman to make this very difficult choice, and it’s one that women who already have breast cancer face as well. A recent study presented at the American Society Clinical Oncology’s annual meeting on June 3 found that there is a growing trend of women aged 40 and younger with BRCA to have prophylactic mastectomy, removal of a noncancerous breast, after discovering breast cancer in the other one, according to NPR Shots.
New research shows that 37 percent of women with breast cancer choose to have prophylactic mastectomy today compared to fewer than 2 percent in 1998. Looking solely at women choosing mastectomy at all, over lumpectomy plus radiation, more than 60 percent had prophylactic removal of the noncancerous breast.
According to the study of 227 Massachusetts women, women with one the BRCA genes with a “high lifetime risk of cancer recurrence,” like Jolie, were much more likely to elect for a mastectomy of one or both breasts
Conserving breasts through lumpectomy out of body image concerns was not the case among these women, according to study author Shoshana Rosenberg.
“From our perspective, the most interesting finding is that role that anxiety plays in the decision,” Rosenberg told NPR. Women who scored high on a standard test for anxiety were more likely to choose mastectomy.
Does Fear Fuel Surgical Intervention?
“The emotions often fuel taking action as soon as possible, leading to a decision to get a preventive mastectomy. Getting preventive mastectomy is doing something tangible, taking action to address a potential diagnosis of cancer,” said Niki Barr, Ph.D., founder of a psychotherapy practice dedicated to working with cancer patients, loved ones and caregivers in all stages of the disease, in a recent interview. With regard to Jolie, Barr added, “Fear, worry, overwhelm, a feeling of helplessness, and anger tend to crescendo with each family member diagnosed with cancer and dying from cancer.”
Jolie revealed in her op-ed in The New York Times that with a “faulty gene,” BRCA1, and her family history of cancer—her mother passed away from ovarian cancer at age 56 and her maternal aunt died of breast cancer at 61—doctors estimated she had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer.
She emphasized that the risk is different in each woman, but on average, those with a defect in BRCA1 have a 65 percent risk of getting breast cancer.
While the decision to have preventative surgery was not easy, Jolie said she decided to proactively minimize her risk as much as possible. With the double mastectomy, Jolie said her risk of developing breast cancer was reduced to 5 percent.
The first of Jolie’s six children met her mother, Marcheline Bertrand, before she died after almost a decade of fighting ovarian cancer. The children have asked if the same could happen to Jolie “I can tell my children that they don’t need to fear they will lose me to breast cancer.” she wrote.
Questions about whether one is going to die or pass on a risk of cancer to children are big concerns when women find out they have a BRCA mutation, according to Barr. She suggests that you keep children involved with the process the whole time. “You won’t have one conversation, you will have an ongoing conversation,” she said. “These conversations center around information, children asking questions, and reassurance that together you will take action.” Action may be screening, preventative lifestyle choices or surgery.
Jolie’s aunt, Debbie Martin, also carried the BRCA gene, according to her husband Ron, but wasn’t aware of it until she was diagnosed with breast cancer in 2004. He said that if they had known earlier, Debbie Martin would have done exactly what Angelina did.
“Because of the BRCA gene in the maternal side of the family, Angelina did the smartest thing on earth,” he told People magazine.
“Experiencing the loss of a loved family member because of the same BRCA-1 gene that you are diagnosed with makes the threat of death that much more real,” Carole Lieberman, M.D., “media psychiatrist” and bestselling author said in an interview.
BRCA Mutation and Cancer Risk
BRCA1 and BRCA2 belong to a class of genes known as tumor suppressors. Normally they help to prevent uncontrolled cell growth. Mutation of these genes have been linked to an increased risk of developing hereditary breast and ovarian cancers. Everyone possesses the BRCA1 gene, but it only mutates in one in 1,000 people.
“Anyone who looks at their family history and starts to realize that there’s an increased number of people in their family that have a breast cancer or ovarian cancer, even one family member with ovarian cancer or more than one prostate cancer or pancreatic cancer—these are all reasons why we would want you to go in and speak with somebody who is a genetic counselor,” Dr. Heather Einstein, a gynecologic oncologist at Hartford Hospital, told WFSB.
At Hartford Hospital, women can see a group of medical oncologists, gynecological oncologists and genetic counselors that all work together to help people decide if they are a good candidate for getting this type of genetic testing.
“Among the things that you want to think about are people that have any of these cancers at a young age and people from certain types of cultures, such as Ashkenazi Jewish, where there is an increased risk of having a BRCA mutation, which means you’re predisposed to one of these cancers,” she said.
Einstein said that BRCA1 and BRCA2 both predispose a person to having breast and ovarian cancer, as well as predisposing people to having prostate cancer and pancreatic cancer.
According to the National Cancer Institute (NCI), the average woman has a 12 percent chance of developing breast cancer in her lifetime, compared to 60 percent of women who have inherited a harmful mutation in BRCA1 or BRCA2. The risk of ovarian cancer leaps from 1.4 percent in the general population to as much as 40 percent of women with BRCA1 or BRCA2 mutation.
Prophylactic mastectomy, and the surgical removal of healthy fallopian tubes and ovaries, salpingo-oophorectomy, cannot remove all tissue at risk for developing cancer, according to the NCI. Additionally, it states there is evidence that the amount of protection salpingo-oophorectomy provides against the development of breast and ovarian cancer may differ between carriers of BRCA1 and BRCA2.
However, Einstein said removing the ovaries, “decreases your risk of breast cancer by 50 percent and decreases your risk of ovarian cancer by up to 90-plus percent.
“I would really recommend that people consider having their ovaries removed because ovarian cancer is something we cannot screen for, and it can be very devastating,” she said. “It gets diagnosed at a very late stage in most situations, even when we’re looking for it. So we really do try to encourage people when they’re done with childbearing to have their ovaries removed.”
Lieberman offered additional perspective. “Just as breasts symbolize femininity, ovaries symbolize fertility,” she said. “A woman’s attitude towards the removal of her ovaries would depend upon whether her child-bearing needs have been fulfilled.”
According to Time, 36 percent of women who test positive for BRCA1 opt for preventive mastectomy in the U.S. Einstein said electing to have a mastectomy is a very individualized choice. There are other considerations when it comes to having a prophylactic mastectomy.
Psychological Implications and Body Image
“In the desire to protect oneself from cancer as with Angelina, sometimes women move forward quickly and may or may not consider body image,” Barr said. “While a woman can’t truly know how she will feel about her body until after both surgeries, and even months after that, emotional well-being cannot be ignored.
“How your body will be different physically and sexually, because it will be significantly different. Implants are not the same as your own body’s breasts. Or, if you make the choice not to have implants, your body is clearly different without your breasts. How you feel about your body with implants or without implants?”
Barr recommends talking with an oncology-trained psychotherapist, social worker, or psychologist before and after surgery to help you explore psychological concerns. “They can help you navigate ‘a sense of disempowerment by limited choices’ or concerns about your femininity,” she said. “Seeing a therapist will allow you to explore your thoughts and feelings, with the goal of helping you to successfully deal and cope with these.”
She stresses the importance of support from a genetic counselor, doctor, nurse and other women who have had implants. “Talking with other women who have gone through the same experience is very important,” she said.
Lieberman emphasizes how important it is to connect with other women who have ‘been there.’ “They can provide invaluable support along the way,” she says.
It’s a different experience for each woman. “Some women feel damaged or a loss of identity after a mastectomy,” she said. “Others, who weren’t happy with the size or shape of their breasts to begin with, actually feel elated after a mastectomy and reconstructive implants.”
The Cost of Prevention
Most woman are not Hollywood mega-stars like Jolie, and not all women can afford to get a preventive mastectomy, reconstruction, or even genetic testing. Finances play a major role in making a decision on whether one can afford to have a mastectomy with reconstruction.
“Many women would be hesitant to have a mastectomy if they could not afford a competent surgeon to do breast reconstruction afterwards,” said Lieberman.
Most women expect to “look good” after healing from reconstruction, Barr said. “They do want their breasts to look as good or better than the ones they had removed. If the surgery does not meet their expectation, body image and emotional wellbeing are negatively affected.”
Lieberman agreed, “Although ideally the decision to have a mastectomy or not should not be based on finances, the truth is that it can be emotionally devastating for a woman if she cannot afford to make herself feel whole and pretty again.”
Myriad Genetics is the only company that manufactures the genetic test, and it currently costs $3000.
At Hartford Hospital, Einstein said insurance covers the test in most cases. “One of the nice things we’re able to do for patients is that we only run the tests if the insurance company is going to pay so we counsel people and we help them make decisions as to whether or not it’s a good option to get tested,” she said. “Then nobody gets any testing done until we know whether or not it’s going to be covered because…it can be very, very expensive.
Less Invasive Approaches: Diet and Lifestyle
One should remember there are other alternatives for those with BRCA mutations besides prophylactic mastectomy and the removal of ovaries and fallopian tubes. Dr. Kathie-Ann Joseph, a top breast surgeon at NYU Langone Medical Center and an expert on BRCA mutations and prophylactic surgery, said in Well + Good NYC that other options include “intensive screening via mammograms, sonograms, and MRIs, preventative chemo drugs, and lifestyle changes, like avoiding further risk factors like alcohol.”
In his May 31 newsletter, Dr, Joel Fuhrman, an American board-certified family physician specializing in nutrition-based treatments for chronic disease and obesity, stressed the role a healthy diet can play in dramatically reducing the risk of cancer, even genetic breast cancer. “Natural plant foods contain a huge quantity and variety of phytochemicals, micronutrients with a variety of anti-cancer effects: anti-estrogenic, anti-proliferative, pro-apoptotic, anti-angiogenic, antioxidant and anti-inflammatory effects. All of these different functions act synergistically to prevent the development of cancers, regardless of a person’s genotype,” he wrote.
Fuhrman stated that studies have demonstrated than an overall nutrient-dense diet, with strong vegetable and fruit consumption, is associated with decreased breast cancer, even in carriers of BRCA mutations. In a meta-analysis of 13 epidemiological studies, intake of high cruciferous vegetables, like broccoli, Brussels sprouts, kale, bok choy, cauliflower and cabbage cut risk in half for women with a breast cancer-associated genetic mutation.
“The fact that not every woman who has these mutations gets breast cancer suggests that environmental factors can have a preventive effect,” said Fuhrman. “It is clear that even in the context of increased genetic risk, diet and lifestyle trump genetics.”
Be conscious of environmental toxins, especially hormone disruptors. Estrogen-mimickers like BPA in plastics and parabens in make-up and skincare products, are causing pre-menopausal women to ingest even more estrogen from the environment, feeding estrogen-sensitive tumor growth. Look for products that do not contain BPA, parabens and other estrogen-mimickers. The Environmental Working Group has a Skin Deep Cosmetics Database to help identify common ingredients and products to avoid.
Go here for an 8-Step Plan For Preventing Breast Cancer for more tips on potentially decreasing the risk for cancer through healthier living.
Barr’s new book, Emotional Wellness: The Other Half of Treating Cancer, gives patients effective and simple strategies for helping them move forward through cancer.