A big decision for a local cancer advocate
Editor’s Note: This story was updated on May 10, 2017, to clarify information about the PALB2 gene that is discussed in this article.
Sometimes it takes a friend to give you that nudge to do something you know you ought to do.
Last May, musician Sarah Swain was talking to a friend who’s afraid to go to the dentist, and Swain admitted that she was frightened of getting a mammogram.
“We made a deal that she had to go to the dentist and I had to get a mammogram,” Swain said. “She made me call right then.”
Swain, 43 at the time, had never had a mammogram even though there’s a history of cancer in her family – and even though she’s founder and executive director of Cape Wellness Collaborative (CWC), a local nonprofit that gives free complementary, integrative therapies (including massage, acupuncture, Reiki and nutrition counseling) to people with cancer.
“I had this big production built up in my mind of what a mammogram was going to be,” said Swain, who is the lead singer of the rockabilly band Sarah Swain and the Oh Boys.
But when she went to the Fontaine Outpatient Center in Harwich for the exam, she gained a new understanding.
“It wasn’t painful. It was so simple, so quick, so convenient,” she said.
A candidate for testing
The mammogram came back clean, but, based on her family history, Swain was told that she was a candidate for genetic testing.
Her mother was diagnosed with stage 4 ovarian cancer when she was 50 and died 18 months later in 2006. Around the same time, her uncle died from brain cancer and her grandmother passed away after a third bout with breast cancer.
“My mom was last person on earth you’d ever think would get sick,” Swain said. “She was always healthy, never drank, never smoked. You end up coming up with your own set of reasons – environmental reasons – why things might have happened. I never considered the genetic component.”
Swain was surprised to learn that she could have the genetic testing done on Cape Cod instead of going to Boston. She met with breast surgeon Kate Dalton, DO, a CWC board member who had become a friend.
“I met with Kate and went over my family history,” said Swain, who had blood drawn for the test at Cuda Women’s Health Center in Hyannis. “It was really low-key. Very simple.”
“Genetic testing has become more mainstream,” said Dr. Dalton. “It’s an important tool in cancer prevention. For Sarah, if we hadn’t done the testing, we wouldn’t have known the risks. Anyone with a family history should be tested.”
A Big Decision
Swain waited a few weeks for the test results. “It was in the back of my mind, but I really thought it was going to be negative,” she said.
Instead, it came back positive for PALB2, a newly discovered mutation that’s related to the BRCA2 gene.
“When I got her results, I cried because she’s my friend,” said Dr. Dalton. “But at the same time, I realized there was hope. Knowing the results, we could focus on prevention.”
“The risks are on par with the BRCA2 gene, so that was a shock, to say the least,” said Swain. “They immediately sent me for an MRI, which came back totally clean, which was great news.”
People with the PALB2 or BRCA2 gene have to make a decision.
One is to have screening every six months, with biopsies if anything is detected.
“I know of people who are happy going years and monitoring the situation, which is a fine option for some people,” she said. “But you’re on this hamster wheel of always waiting for test results. That just didn’t seem like a good time to me.”
The other option is preventive (or prophylactic) surgery. After consulting with four doctors, Swain decided to proceed with a double mastectomy and a salpingo-oophorectomy (removal of the ovaries and fallopian tubes).
While PALB2 is not a gene that has been strongly linked to ovarian cancer (in contrast to the BRCA1 and BRCA2 genes which are well-known to cause ovarian cancer), because of her family history, Swain opted to have her ovaries removed.
“It’s a personal decision that people need to make,” Swain said. “You need to get all the information that you can and talk to as many people as you can. I was put in touch with two women who had prophylactic surgeries. Both were a little over a year out and were so glad they did it. They felt like they were free from worry.
“After watching most of my mother’s side of my family die from cancer in a short period of time, I looked at my kids and knew what choice was right for me.” (Swain and her husband, Steve, are the parents of Lucy, 12; Jessie, 10; and Stan, 4.)
“I didn’t want to spring into action after cancer was found, even though they could find it early. I just decided to go for it. It was so helpful to have a supportive partner in Steve, who was involved in and supported all my decisions.”
‘Like a NASCAR pit stop’
The surgeries would put her percentages of getting cancer below that of an average person with no genetic risk, she said. Still, she gave herself some time to prepare. She got the results of the genetic testing last October and underwent surgery at Cape Cod Hospital in March.
“Instead of having multiple surgeries, we decided to do it all at once with a follow-up surgery in June for some reconstruction,” she said. “I’m a ‘rip off the band-aid’ personality. I’d rather just do it and move on with my life.”
The surgeries were performed by plastic surgeon Michael A. Loffredo, MD; obstetrician/gynecologist Tara Chute, MD; and Dr. Dalton.
“Steve said it was like a NASCAR pit stop – three surgeons taking turns doing their thing. The doctors, the nurses, everybody was just phenomenal. The level of friendliness and compassion that we received while I was in the hospital was fantastic.”
Before and after the surgery, Swain often thought of her mother.
“She was always wondering why this happened to her. She was always super healthy and active. She didn’t have a choice. I feel blessed to have had this choice. That’s not always the case, so I feel really lucky that I could be proactive. I didn’t want my three kids to go through what I went through with my mom.
“I don’t have cancer, but I’ve had a front-row seat to people who’ve had cancer. This has given me an even deeper compassion for them.”
A week after her surgery, Swain had an acupuncture treatment, something that is popular with CWC clients.
“When I went in, I had some pain and nausea and just generally didn’t feel that great,” she said. “When I left, I had no nausea, I had very little pain, and my general sense of well-being felt like it had returned. It reinforced what we’re doing with Cape Wellness. I really see how important it is to schedule even small bits of time for self-care.”
Swain said she’s learned a lot from the experience.
“I wouldn’t judge anyone for whatever decision they make,” she said. “It’s a personal choice. I’m glad I chose the surgeries and I’m glad to be on the other side.”
Sarah Swain & the Oh Boys will perform May 13 at the Cape Cod Women’s Music Festival, a fundraiser for the Cape Wellness Collaborative.
Featured Photo: Photo by Joe Navas/Organic Photography. The photo was taken the night before Swain’s surgeries and shows three ink stripes to guide the surgeons.