The news arrived at an inauspicious time. Moments before Ally Durlester, then a 21-year-old senior at Franklin & Marshall College in Lancaster, Pennsylvania, was about to take the stage for a dance performance, her cell phone rang. It was her dad, and he had bad news: Her mother had just been diagnosed with breast cancer. In a shocked daze, Durlester took to the stage and performed, then immediately got back on the phone to find out what this news meant.
Eventually, her mother’s diagnosis would have repercussions for Durlester’s own health. A strong family history of breast cancer and a known breast-cancer causing mutation on her BRCA2 gene meant Durlester’s mother, Nicki Durlester, who later wrote a memoir about her experience and founded the popular “Beyond the Pink Moon” breast cancer support group on Facebook, was at a much higher risk for developing breast cancer. But even though the National Cancer Institute reports that “about 69 percent of women who inherit a harmful BRCA2 mutation will develop breast cancer by the age of 80,” Durlester says “we really hoped that my mom would be the one woman in her family who it didn’t affect. For so long she was untouchable — she was 54 and we thought nothing will happen,” but then it did happen. And watching her mother go through the pain and anxiety of cancer treatment, spurred Durlester to make some important decisions about her own health future.
[See: 10 Innovations in Cancer Therapy.]
Within about 18 months of her mother’s diagnosis, Durlester had undergone genetic testing to find out her own BRCA status. She tested positive for the same mutation as her mother. Armed with this information, Durlester realized she had some decisions to make if she wanted to remain in control of her health. “I realized this mutation is extremely strong and serious and [breast cancer] may affect me. That was the first time I really started thinking about the fact that this could be me. I had known for many years that [my mom] had a mutation, and I knew all about our family history,” she says, noting that her grandmother had died of fallopian tube cancer and six of her grandmother’s seven sisters had battled breast or ovarian cancer, “but I was so young, I didn’t think I had to worry about it. That was a big turning point for all of us,” she says.
Durlester’s experience is unfortunately not unique. Watching a loved one deal with cancer can have a hyper-focusing effect for many people. A recent study conducted at The Ohio State University found that women who’d lost a loved one to cancer were much more likely to opt for aggressive prevention options for themselves, especially if they carried a genetic mutation known to increase risk. Although Durlester’s mother survived her bout with breast cancer and is living cancer-free today almost a decade later, witnessing what she went through (in light of her grandmother’s death from a cancer related to the same genetic mutation) galvanized Durlester to make some difficult decisions about how she wanted to proceed.
Initially, Durlester says, she “wasn’t ready for the surgery,” meaning a preventive double mastectomy that would essentially eliminate her risk of developing breast cancer. Instead, she embarked on a program of active surveillance, an aggressive screening schedule that meant undergoing alternating clinical breast exams, MRI and ultrasound testing every six months to look for any changes in her breast tissue that could signal cancer. But by age 26, Durlester says it was time to have the surgery. “I was both mentally and physically prepared and in a good situation with work, and my parents were on board.” One of the deciding factors, Durlester says, was “I don’t want what happened to [my mom] to happen to me. I want to end the cycle in our family.”
To some, having both breasts removed at such a young age with no symptoms or signs of cancer might seem like an extreme move, but for Durlester, reducing the risk as much as she could made a lot of sense — it gave her control over the cancer that had haunted her family for so long. “I think these aggressive preventive options that patients pursue are often a means of taking control of this thing,” says Kristen Carpenter, clinical psychologist and director of Women’s Behavioral Health at the Ohio State University Wexner Medical Center. “Cancer, like many other illnesses, feels like it’s completely outside of your control,” but being able to make the decision to head the disease off at the pass puts some control back in your hands.
For people who’ve had some close-range experience with breast cancer — helping a loved one through it or losing a friend or family to the disease — especially if such was triggered by an inherited gene mutation — the calculus for what to do when faced with their own health care decisions is somewhat different than for a someone with no experience and average risk of cancer. Carpenter says higher risk individuals often consider “what am I willing to do to avoid that experience? Am l willing to lose my breasts? Am I willing to endure premature menopause? While those things are difficult and debilitating, I think that reduction of risk, that ability to take control of something that caused a loved one to suffer is very empowering for some individuals.”
Such was the case for Durlester. Once her decision had been made, she was at peace with it. “It was the best decision of my life. I have peace of mind. I healed from that surgery and moved forward. I have never looked back.”
[See: What Not to Say to a Breast Cancer Patient.]
Being able to have that peace of mind and put to rest the potential threat of breast cancer is a common refrain among “pre-vivors,” people who elect to undergo prophylactic treatment for breast cancer. Carpenter says some people “have real difficulty tolerating uncertainty — this notion that [cancer] might be right around the corner — and reducing that uncertainty by removing breast tissue, for instance, helps them move through their day-to-day life without a fear of cancer, or at least a greatly diminished fear of cancer.” She notes that although it is still possible for someone to develop breast cancer after a preventive bilateral mastectomy, it’s rare. (The American Cancer Society reports the procedure lowers risk of developing breast cancer by 90 percent or more.)
Some women with BRCA1 or BRCA2 gene mutations also opt to have their ovaries and fallopian tubes removed, which can further reduce their chances of developing cancers linked to BRCA gene mutations. These procedures don’t rule out the chances of developing other kinds of cancer, but such measures go a long way toward eliminating the biggest risk factors for these patients.
If there is an upside to seeing a loved one struggle against cancer, it’s that you may know more about the disease and your options than the average person. For an individual who has seen a family member or friend go through the experience of cancer, “they have a little better idea about what to expect,” Carpenter says. “It changes the nature of the kinds of questions they ask and what they seek, so on one hand it’s an informational advantage.”
Durlester says this was absolutely the case for her. “I have a mother who is brilliant and so educated on the topic that it made my journey that much easier because I had guidance.” She also had access to good doctors and genetic counselors who were able to help her make the decision that was right for her.
Having access to this sort of professional help is an important piece of the puzzle, Carpenter says. For people considering prophylactic surgeries, she says, “I would recommend making a face-to-face appointment with a genetic counselor who can really walk the patient through the various risks, because understanding the numbers in all of this is not super straightforward. There are also marvelous resources available through the ACS and the National Cancer Institute that explain in really nice detail and patient-friendly language what the risks are and what kind of risk reduction the various prophylactic procedures can offer.” She also recommends asking a member of your care team if you can speak with a patient who’s gone through the procedure you’re considering. “Most cancer centers will have a group of patients who’ve agreed to be mentors or peer consultants to other patients, and so reaching out via providers to that network can be really helpful to talk to someone who’s been through it and understands what their decisions were.”
Lastly, Carpenter says working with a mental health provider who has experience working with cancer patients and helping people making decisions around the topic of cancer may be very useful. “Very often these feel like family decisions, but when it’s something this personal, close family members have their own opinions of what you ought to do. They can’t always separate the patient’s choices from the consequences for themselves.” For example, if a woman decides not to undergo genetic testing to determine her BRCA status, that could have consequences for her children, and other family members might have strong opinions about that decision.
See: A Tour of Mammographic Screenings During Your Life.]
Therefore, “having an outside perspective is particularly important when we’re talking about genetic information and consideration about prophylaxis. To be able to work this out, to say all of the things you need to say out loud to another person who’s there and ready to listen and to help you through it can help,” Carpenter says. “It’s complex, and working through the complexity often involves saying things that you might not want to say to your partner or your sister or your daughter.”
In the end, Durlester urges other people facing such decisions to listen carefully to their own inner voice. “Listen to your gut. Trust your instincts. Don’t be concerned about what others may think of your decision, and really just do what’s best for you.” She says finding out she was BRCA2-positive was a “blessing in disguise. Although it’s such a hard thing to hear, you can change the trajectory of your whole future.” She recommends staying educated, reading a lot, asking lots of questions and staying positive throughout the whole journey. “Each journey is so unique. Everyone handles things differently, and that’s OK. You ultimately need to do what’s best for you.”
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How a Loved One?s Experience With Cancer Guides Breast Cancer Decisions originally appeared on usnews.com
