Cancer survivor Gwen Simons’ choice to have a mastectomy led to the discovery of a second tumor.
At 54, breast cancer survivor Gwen Simons of Scarborough is training for her first Tri for a Cure.
“I’m a runner, and the biking doesn’t scare me, even if I haven’t biked much since high school,” says Simons. “But I am petrified of swimming in open water. Even when I used to take my kids to the beach, I wouldn’t get in the water because it was too cold.”
Having grown up in Kentucky, the idea of swimming in the frigid Casco Bay leaves her especially cold.
“But, if all these other inspiring women can do it, I can do it,” she says. “I have a lot to be thankful for.”
While doing a self-exam in 2010, Simons found what she thought might be a lump in her left breast. It turned out to be nothing. But, in her right breast, a mammogram showed a half-centimeter ductal tumor—stage 1 breast cancer. Her physician recommended a lumpectomy and six weeks of radiation.
It was October—breast cancer awareness month—and breast cancer was all that Simons could think about. With a significant family history of cancer, she was tempted to have a double mastectomy—a more drastic approach than her doctors were suggesting—and just be done with it.
“The fear of it coming back—the cancer—was bigger than the fear of whatever procedure I would have,” says Simons. But she worried that she was just altogether too practical, joking that she was done having children and that she didn’t really need breasts anymore.
Meanwhile, Simons and her husband Ken, both physical therapists, went to the annual conference of the American Academy of Orthopaedic Manual Physical Therapists. There, Simons attended a lecture on physical therapy treatment of breast cancer patients, who often seek physical therapy due to shoulder dysfunction caused by surgery, radiation or both. Simons already had limited shoulder range of motion, muscle strength and flexibility on the right side, and she wanted to protect what she had—if she could—while protecting her life. She consulted with four physical therapists from around the country about the choice before her, and they all supported her in choosing a mastectomy.
“It was comforting to hear somebody say it’s okay if you want to do that, even if it is a small tumor,” says Simons. “I really hemmed and hawed about what to do. But I wanted to make the decision to have a mastectomy, and it helped that I had the support of my husband, who just wanted me to do whatever gave me the best chance.”
“I really hemmed and hawed about what to do. But I wanted to make the decision to have a mastectomy, and it helped that I had the support of my husband, who just wanted me to do whatever gave me the best chance.”
“Gwen consulted with our professional colleagues, some highly respected people around the country, and analyzed the potential risks of various procedures,” Ken Simons says. “And, as physical therapists, we understand how shoulder dysfunction can affect somebody.”
Ken’s mother had a radical mastectomy and radiation in the 1970s. She survived another 30 years—with shoulder dysfunction and lingering effects from radiation and chemotherapy.
With both fear and love—fear of cancer coming back and love of her active lifestyle—Simons chose a mastectomy. And that probably saved her life. Pathology after the mastectomy revealed that she’d had a second tumor that had not shown up on her mammogram.
“It was a lobular tumor, and those hide in the lobes of the breast and are hard to find,” Simons says.
And at 5.5 centimeters away from the ductal tumor—it was too far away to have been eradicated by the radiation for the ductal tumor. She would have undergone a lumpectomy and radiation and still had undetected breast cancer.
“I feel blessed,” says Simons. “When you have two different tumors more than 5 centimeters apart, it’s called multicentric breast cancer. The prognosis on those cases is not as good. I feel lucky that I made the right decision. I credit my survival for this long to making the right decision.”
“It’s been more than five years,” says Ken. “And if she hadn’t chosen the more aggressive treatment she might not be here to do some of the things that she had never slowed down long enough to enjoy, like motorcycle touring and hiking. She was ecstatic to climb the Beehive Loop Trail in Acadia. Now she will even ‘stop to smell the flowers!’”
There was one more choice to be made: breast implants or reconstruction.
“Being a physical therapist, I knew that for reconstruction they take muscle from the back or stomach,” says Simons. “But then you don’t have that muscle when you need it.”
She chose implants, understanding that with a mastectomy the implants would be tucked under a layer of skin and muscle rather than under a layer of breast tissue.
“When wearing clothes or a bathing suit, you can’t tell,” Simons says, and she is wearing a bathing suit quite frequently these days, training for the Tri for a Cure.
“At this point in my life, it’s going to be way harder than the marathons I did when I was in good shape,” Simons said, referring to the Chicago and San Diego marathons she ran when she was in her 30s.
Running has been something she’s done most of her life. But in the vortex of cancer and the relief that followed, Gwen got out of the habit. Four years ago, she started trying to run again and couldn’t even run a quarter of a mile.
“It takes a consistent effort, more than anything else, especially at my age,” Simons says, outlining her training. It’s purely a factor of age, she said, that if she skips training in one of the disciplines for even four days, she feels her stamina waning.
That’s why her training regime is about consistency: three or four runs, three swims, two bikes and three weight training sessions per week. Three of those sessions per week are with the sheJAMs 12-week Triathlon Program, which will get her swimming in Crystal Lake by June and in the ocean off Southern Maine Community College by July.
“I’m training enough to finish the race and raise money for the Maine Cancer Foundation,” she says. “I’m not going to be fast, but I’m going to finish.”
Amy Paradysz is a freelance writer from Scarborough. She doesn’t love mammograms, but they sure beat the alternatives.