What It's Like Getting a Preventive Mastectomy to Stop Breast Cancer Before It Starts: Living with BRCA
Elizabeth “Brianne” Lovin underwent a double mastectomy with breast reconstruction, a hysterectomy and a removal of both of her ovaries and fallopian tubes at age forty-one, not because she had cancer, but in order to prevent cancer. She is one of the approximately 0.25% of the population that carries a BRCA gene, a hereditary gene mutation that prevents normal tumor suppression. The BRCA genes are only a few of the dozen genes that indicate a significantly increased risk of breast and ovarian cancer, with more being discovered every day.
Brianne always knew there was cancer in her family history; her great-grandmother had relapsing breast cancer in the 1970s, a second cousin was diagnosed with breast cancer in her forties, an uncle died from metastatic bladder cancer in his fifties, a great-aunt had stomach cancer, her dad had melanoma and prostate cancer, and on and on. She herself had a lump removed in 2017, that turned out to be benign. Then, in 2020, Brianne’s half-sister was diagnosed as HER2-positive stage IX breast cancer (HER2 is a protein that tends to make cancers grow and spread more rapidly, and Stage IV (of the TNM staging system) means her cancer was invasive, having spread past the breast into lymph nodes and on to other tissue in the body). After chemo and a double mastectomy, she is currently in remission.
“My half-sister called me one day to say that her doctor wanted her to get genetic testing and that she had the BRCA2 gene and thought that I should get tested too,” Brianne said. “At the time, I kind of just blew it off. I thought there was no way that I could have it. I thought that it probably came from her mother’s side, because her mother had passed away from a different cancer at a young age. At the time, I didn’t know a lot about these genes. So, I decided to get tested. It was a quick blood draw at my gynecologist’s office, no big deal. I even forgot about it.” Then, a few weeks later, while she was working as a user interface designer in her home in Austin, TX, she got a call. “I had inherited it. I was immediately scheduled for a 3D mammogram and an MRI.”
Brianne would later learn that the gene mutation she had did not share a pattern of inheritance with her half-sister, meaning that the BRCA2 gene they both had didn’t come from their mutual parent, it was just a bizarre coincidence. Also, as a genetic counselor helped them map where the gene came from and who might be affected in their extended family, a cousin tested positive not for BRCA, but for a breast and colon cancer mutation called CHEK2. Once Brianne knew she was genetically predisposed to breast cancer, she faced difficult decisions about how to best prevent cancer from developing. She learned that women in the general population have approximately 13% chance of developing breast cancer in their lifetime, but those with BRCA variants have a 50-70% chance. She was told her risk was as high 80%
The weeks following her BRCA diagnosis were full of appointments with her new cancer-preventing team; gynecological oncology surgeon, breast surgeon, plastic surgeon, and medical oncologist. She also did a lot of reasearching on her own and finding support groups full of women in similar situations.
“I remember reading a post on one of the (breast cancer support) Facebook groups I follow about getting surveillance (frequent mammograms and ultrasounds or MRI’s) versus having surgery. One woman commented, ‘Surveillance is early detection, surgery is prevention,’ and that really stuck with me. Also, I ran across Angelina Jolie and Christina Applegate’s stories and it hit me, I knew that I was going to end up having this major surgery.”
Mastectomies to remove her breasts wouldn’t be the only major surgery she would require. Since BRCA also massively increases the likelihood of developing ovarian and fallopian tube cancers, Brianne, like both Jolie and Applegate before her, was advised to have her ovaries and fallopian removed to mitigate the risk, which meant going into early and abrupt menopause. “I was really scared to get my ovaries out. I was scared about all the things that come with it...aging, bone health, heart health, having sex, drying out, gaining weight, depression, memory issues, everything. My oncologist told me that once I had the surgery I would only be able to stay on estrogen pills for about 10 years. That was also nerve-wrecking. But I went ahead with the surgery. Ovarian cancer scares me, and I thought if I went through this mastectomy and didn’t get my ovaries out and then got cancer after all, I’d be pissed. They said it was likely safe to wait until I was forty-five, but seeing how ovarian cancer is really hard to detect, I didn’t want to wait. I decided to use an oncologic gynecologist for my surgery as opposed to my regular OBGYN because if I had the surgery and they found cancer, they could take care of it while I was under and I wouldn’t have to have another surgery.”
So, Brianne and her team decided the best plan was for her to have a nipple-sparing bilateral mastectomy with reconstruction (complete removal of the tissue of both breasts maintaining the nipple and its blood supply, and implant replacement), as well as a total hysterectomy with a bilateral salpingo-oophorectomy (removal of her cervix, uterus, both fallopian tubes and ovaries). “I was ready to get it all taken care of and to move on from it, and hopefully not have to worry about cancer. To me, it would be more of a mental game. I knew I could do the surgery. I was in the best physical shape of my life. I think the hard part then was thinking about how I would feel having no breasts. At the time I couldn’t wrap my head around that. It was hard leading up to the surgery.”
Monique Bicego, MS, PA-C, has worked in surgery for over twenty years and specialized in breast surgery for the past seven. She says that the psychological aspects of dealing with cancer are as challenging as the physical ones. She also noted that the anticipation of the procedures is worse than the actual experience. Monique tells friends and patients to not wait to get their mammograms out of fear or wait to complete a family health history survey or do genetic testing, because “The more we know, the sooner we know, the better.” With genetic testing and gene mapping, like Brianne had, the intention is to prevent cancers in the first place, but Monique reminds us that even when someone is diagnosed with an active breast cancer, “Do not assume it’s a death sentence. Quite honestly, it’s the opposite. We have so many options with which to manage these cancers now.”
At that point, all that was left to decide for Brianne was if and how she would have reconstruction to replace her breast tissue. She could leave her post-mastectomy chest as it was, without replacing the breasts, but she says, “I thought about that for two seconds and decided that was not for me. I like boobs!” Another possibility was undergoing a complex flap surgery that brings the tissue (blood vessels, fat, skin) from the lower abdomen to the vacant breast area, acting as a local donor. Although her surgeon was adept at doing that type of surgery, Brianne felt it had, “Too many risks that I was not willing to endure. I didn’t want to be cut in half and I was afraid of having ‘frankenboobs.’ I wanted the least impact to my body, my health, and I didn’t want to put my family through it.” She determined that she would get implants. “The only thing that had me worried was Breast Implant Illness, but after doing that research, I learned that it only affects a small number of people. Most are fine with implants. I knew that was the choice for me.” Immediately after her breast surgeon finished the mastectomy, Brianne’s plastic surgeon inserted empty surgical grade bags, or expanders, under her chest muscles. As she recovered, they were slowly filled with saline at her plastic surgeon’s office until they reached the desired fullness, and then were traded out for the permanent implants.
The good news is, Brianne found her predisposition to cancer before it grew into an active cancer that required additional treatments like chemotherapy or radiation. In fact, “A few days after my mastectomy, my doctor called with the biopsy results from my breast tissue that had been removed. I had Atypical Ductal Hyperplasia (ADH) in the right breast, which are precancerous cells. I don’t have any regrets and those results really confirmed that I had made the right decision for me and for my family.”
The tough news is, these are still major surgeries, and the recovery is difficult. Following her mastectomies and reconstruction she was discharged home with two drains in each breast site to evacuate collections of fluid, which she says were the worst part about recovery. The drains were removed by the second week postop, but she was still weak and easily out of breath with exertion, slowly working her way up to longer and longer walks approximately a month following surgery. Her wonderful husband and teenage daughter were vigilant in her care; cooking, helping her shower, even supporting her getting in and out of the bed. She slept in an anti-gravity chair and had lots of pillows to support her. She says, “Pillows are a must!”
About four months after her mastectomy, after she was fully recovered and the expanders had been filled to her desired breast size, she went back in for a short surgery for the permanent implants. “The expanders felt like two plastic bags under the skin. Breast implants are much more comfortable. Afterwards I felt more like myself. I had had an under-the-skin bruise, or hematoma, following the mastectomy, so I ended up having 3 months of physical therapy after my exchange surgery to help with limited range of motion in my arm on that side.
Following the pelvic surgery- robotic-assisted total hysterectomy and bilateral salpingo-oophorectomy- she initially had a lot of pain, making it hard to even walk, and then dealt with a good bit of abdominal bloating and gastrointestinal difficulties. “I don’t think I felt good for a long time, maybe a few weeks. Also, I didn’t get sent home from surgery with my hormone pills, so I got home and immediately started having hot flashes.” Her gynecologist quickly put her on estrogen pills and she says, “I was having some pretty moody moments, but within a couple weeks, once I adjusted to the estrogen pills, my hot flashes went away and my mood mellowed out.”
At this point, nearly two years after she found out she had the BRCA gene, Brianne feels like she is mostly back to her normal, healthy self. “Without a cervix, uterus, or breasts, I no longer need pap smears or mammograms! The only regular follow-ups I’ll need are seeing the breast surgeon yearly for a thorough breast exam and to report any changes I may have. I’ll get blood work done once a year at my oncologist’s office. I may need an MRI every 3-5 years to check the implants and make sure there are no leaks and they’re intact. Implants don’t last decades like they used to. They said I would potentially need new ones every ten to fifteen years. I’ll be keeping tabs on my bone density every year with a DEXA (bone density) scan. I also now go to the dermatologist annually to check for skin cancers like melanoma.”
As far as her body image and how this has impacted her sexual self, she says, “I had to mourn the loss of my old breasts. My new “foobs” (fake boobs) aren’t natural looking but they are perfectly reconstructed–my plastic surgeon did an incredible job. I have some implant rippling but that’s normal and sometimes they’re cold to the touch. I could get fat grafting but ultimately, I decided not to get that surgery because sometimes the fat gets reabsorbed and it could end up feeling like a lump and I didn’t want that stress. There are some days I really love the foobs and there are other days where I hate them, mostly they’re livable. I’m constantly wearing a bra. I have a bra for every occasion now...daytime, bedtime, sexy time. :) I’m still not happy with having no sensation. I was able to keep all of my breast skin and my nipples, but I have no feeling in them.” Between loss of nipple sensation and her altered hormones, she says, “I have to navigate sex and pleasure a little differently. It’s harder to get aroused and figuring out my other erogenous zones is paramount. We’re still figuring it out and it can be fun, yet frustrating. I’m also finding that I have to have a different mindset with sex. I have to get out of my head zeroing in on the sensation I’m missing out on and focus simply on pleasure and what feels good.”
Brianne’s advice to other patients with family history of cancers is to get genetic testing as soon as you can. She adds, “Everyone’s journey is so unique. I follow a few Facebook groups and there are all kinds of people with BRCA 1 or 2 or CHEK, or some other high risk cancer gene, who have cancer, don’t have cancer, decide to get the surgeries, decide to wait, get the surgeries only to realize they still get cancer, or people who go flat, get massive surgeries like the abdominal/breast flaps, do direct to implant, or like me, do delayed implants and get expanders first. It’s all a lot to think about but there are options. Especially, if you haven’t gotten cancer yet you at least have some options.
The mental impact of all of this has been a lot to process, not just for her, but for her family, as well. Unfortunately, the ramifications of the gene might extend to Brianne’s thirteen-year-old daughter, as well. “There’s a 50% chance. While I was going through this, we explained it all to her, but I don’t know how much sank in for her. I didn’t want to scare her too much. Once she turns eighteen, she can get tested, or she can also wait until she’s thinking about starting her own family.”
Brianne has always been an extremely fit and active person but, “I approach health and wellness differently now. Strength training is really important to keep my bones healthy especially now so I make this part of my daily routine. I try to eat a healthy diet for just overall gut and heart health, so minimum amounts of fried and processed foods. I make sure I don’t miss any routine doctor visits and I’m strict about taking my vitamins like a multivitamin, calcium, collagen supplements, and magnesium.”
“Going through all of this, I feel like I have so much more mental strength now, and I can conquer anything. I feel super grateful!”
We are grateful that Brianne was willing to share her story with us in such a thorough and frank way. If you are wondering about your own genetic cancer risk, ask details about your family’s health history, talk to your OBGYN or PCP, and stay up to date on your regular health screenings. Let’s beat breast cancer before it even starts!