What does that mean beyond the obvious good news about survival? There is a whole host of long-haul cancer survivors with a lot of accumulated wisdom about diagnosis, treatment, and life after cancer. We sat down with five long-haulers and asked them to share advice with the newly diagnosed.
Rachel F. Brem, MD: There Will Be a New Normal
In 1996, Rachel F. Brem, MD, director of the breast imaging and interventional center at the George Washington Cancer Center in Washington, DC, was weeks away from a prophylactic mastectomy. She’d learned that she carried a genetic mutation, BRCA1, that can increase risk for cancer and wanted to head it off before it could develop with the preventive mastectomy. On a whim, she decided to do an ultrasound on herself — and discovered she already had breast cancer. “At the time, we didn’t use ultrasound to screen for breast cancer, so it was prophetic that I did it on myself all those years ago,” she says. Dr. Brem ultimately had a bilateral mastectomy and chemo. “Cancer doesn’t wait and, gratefully, now we do this as well as other risk-based screenings.” When she reflects back on her experience nearly 30 years ago, she always encourages women who have just been diagnosed with breast cancer to reach out to each other and acknowledge that you’re not alone in facing challenging decisions about your health. “The most important thing to remember is that most women with breast cancer survive and thrive, particularly those with early detection,” says Brem, who is coauthor of No Longer Radical, a forthcoming guide to prophylactic mastectomy, risk-based screening, and how to navigate the many decisions newly diagnosed breast cancer patients have to make. She’s also the inspiration for The Brem Foundation, a Washington, DC–based nonprofit focused on education, access to care, and advocacy. “It’s a difficult road but there are also some silver linings to the grey clouds. You’ll find that people come out of the woodwork to help and that things become a bit sweeter. You’ll appreciate things you took for granted and there will be a new normal. You can look forward to that.”
Linda Kissam: Find Your Voice in Your Treatment
Ask Linda Kissam, 72, who was diagnosed with stage 3 breast cancer in 1989, and she’ll tell you that all these years later she still recalls how frightening her diagnosis was and yet how vital it was for her to learn to speak up, gather medical records, talk to other patients, and get clarity on the treatment path that was best for her. “One of the things doctors took for granted during my treatment was that the women of child-bearing age receiving this aggressive treatment understood that chemo meant sterility,” she says. “I had no idea that halfway through the treatment I would go into menopause. Had I known, I would have perhaps had some egg harvesting done prior to chemo starting.” That’s why you need to become your own warrior from day one, she says. “You need to understand you are hiring doctors to work with you to get well,” she says. “Your voice is integral to the healing process. Look at it this way: You don’t take your car to be serviced without telling the mechanic what’s wrong and the outcome you expect for the service you’re buying.” “Ask questions; don’t leave any appointment until you feel you have the information you need,” she says. “Do research. Follow the plan the doctor creates for you, but don’t be afraid to challenge the journey and the results,” she says.
Maimah Karo: Use Cancer as a Catalyst
For Maimah Karmo, 47, a 16-year triple-negative breast cancer survivor, cancer marked the beginning of a whole new life. As Karmo completed her treatment, she began dreaming of ways to share her knowledge with others, and ultimately did so by starting her foundation, the Tiger Lily Foundation, a national breast cancer foundation, which provides education, awareness, advocacy, and hands-on support to young women (ages 15 to 45) before, during, and after breast cancer. “I urge you to think about this: What could you dream of creating that you thought wasn’t possible before?” says Karmo. “There’s so much you can do, and I always say that if I’m possible, so are you. Think about what you’ve learned that could inform your life and others’ lives. How can you make a difference in the world thanks to the knowledge you’ve gained from your cancer journey?”
Allie Luci: Life Won’t Always Feel Like a Crisis
The phase of shock after a breast cancer diagnosis, surgery, treatment, and follow-up eventually ends and you get to begin anew, says Allie Luci, 47, an artist who was diagnosed with stage 2B breast cancer in 2009. “For a lot of days that first year, the first thing on your mind is your treatment, and your mind and body need time to heal from that,” she says. “You may be worried that you have an expiration date and that your cancer will come back, but there will come a time when you won’t think about it,” she says. “I promise, you’ll start to accept things, feel more comfortable in your body, and wake up feeling less scared and more like ‘I got this.’”
Parul Somani: Try the Path of Least Regret
Major decisions are inevitable when you’ve just been diagnosed with breast cancer. But making them can be more complicated than you expect them to be, says Parul Somani, 39, a well-being speaker and writer in the Bay Area, who was diagnosed with stage 2 triple-negative breast cancer seven and a half years ago, while recovering from a cesarean section. For example, she immediately consulted with three oncologists after her diagnosis — and came away with three treatment recommendations. “At times, I was being asked what I preferred to do and having those choices was a lot of weight to carry,” she says. “I was naively under the assumption that since breast cancer has been around for a long time, there’s lots of science around how to treat it and I would be told what to do. I was surprised to learn that there’s a lot more art than science in treatment.” Parul wanted to figure out a way to navigate the choices, and that’s how the path of least regret was born. “I decided to frame my decisions in terms of how I would think of each one in the future. So, if I were to have a recurrence, looking back would I regret taking the less toxic plan? Or, if I were to have cardiac side effects due to aggressive treatment, would I regret that more?” In the end, though having to make decisions can be anxiety-provoking, she believes choices are empowering.
