Rowers Push Limits for Breast Cancer Survivors

BOSTON (WOMENSENEWS)–Diane Cotting may one day be inducted into the little-known National Rowing Foundation’s Rowing Hall of Fame, located inside the Mystic Seaport Museum in Mystic, Conn. But at the age of 52, and with just nine years of rowing experience under her oar, it’s unlikely that Cotting will earn her nomination by winning a national championship or an Olympic medal, the typical prerequisites for induction.

Rather, it’s Cotting’s statistics away from the sport that will likely earn her consideration for rowing’s top honor: four lumpectomies, one mastectomy, one breast reconstruction, and no symptoms of secondary lymphedema, a nonfatal yet incurable side effect of breast cancer surgery that can cause numbing, swelling and infection of the arm or hand.

Citing Cotting as her inspiration, Dr. Carolyn Kaelin of the Dana-Farber Cancer Institute in Boston has launched a nationwide study to find out if repetitive upper-body exercise by breast cancer survivors will lead to lymphedema–as it is widely believed–or if intense physical activities like rowing prevent lymphedema’s onset. Kaelin says her research, which began in July, will be the first widespread look at the causes of secondary lymphedema, which affects more than 250,000 women in the United States, according to estimates by the National Lymphedema Network.

“Rowing has always been at the top of the list of ‘don’ts’ for women who just had breast cancer surgery,” said Kaelin, who was Cotting’s surgical oncologist at Dana-Farber and is the director of the Comprehensive Breast Health Center at the Brigham and Women’s Hospital in Boston. “But I’m not convinced that it will begin a lymphedema cycle. There’s been so little research done on this disease.”

According to the National Breast Cancer Coalition, a Washington-based advocacy organization, more than 2 million women in the United States are living with breast cancer, and an additional 1 million have the disease and but don’t yet know it.

‘Please, Please, Please Let Me Continue to Row’

The first time she took to the water, in 1993, Cotting was simply looking to add a little excitement to her life. Seven years later, when she joined the One in Nine crew team that competed in the world-renowned Head of the Charles Regatta in Boston, the 50-year-old was rowing her way back to normalcy.

Cotting was diagnosed with breast cancer in April 1999. Over the next nine months she endured nine different surgeries, including a mastectomy of her left breast and a reconstruction that kept her in intensive care for four days. Her upper body was ripped apart and put back together–muscles were removed from her abdomen and used to support her new chest–and yet all Cotting could think about was the hobby that had become such an important part of her life.

“All I kept saying was, ‘Please, please, please let me continue to row,'” she recalls.

But Cotting wasn’t the only inspirational story at that year’s Head of the Charles Regatta. All nine members of the One in Nine crew team–named after the national statistic that purports that one in nine women will be afflicted by breast cancer–were breast cancer survivors defying conventional wisdom about life after treatment.

They had read the reports that intense upper-body physical activity could lead to secondary lymphedema, the accumulation of fluid in the arm after lymph nodes and lymphatic channels are removed during breast cancer surgery–a common practice in limiting the potential spread of the disease. But according to Cotting, each woman independently decided to row on. Life, after all, was simply too short.

“I think a lot of people feel like they’re living in a cage because of all the things they’ve been told they can’t do after surgery,” says Cotting, who owns her own Boston-based business, designing employee benefit plans. “Well, more and more of us have come to realize that there are a whole bunch of things you can do. You can learn to work with your limitations to accomplish and compete in the sports you love.”

Rower Says Risks of Lymphedema Not Worth Quitting Favorite Sport

Cotting says she’s been fortunate not to contract lymphedema. Michele Marks, a teammate of Cotting’s on the inaugural One in Nine crew team, hasn’t been so lucky.

Marks, 39, was diagnosed with breast cancer in September 1996. Two years later she developed what she calls a mild case of lymphedema in her left arm, causing both her bicep and forearm to occasionally swell. But Marks’ ordeal with cancer didn’t end there. Just prior to the start of the 2000 Head of the Charles, she was again diagnosed with cancer, this time in her right breast. Marks had just completed a 100-mile bike ride through Colorado and opted to put off surgery so she could join her surviving sisters and compete in the regatta.

One month later, Marks was back in the hospital having a double mastectomy and reconstructive surgery of her breasts.

“I just couldn’t stop all of my activities, for my mental health if nothing else,” says Marks, who has lived in Cincinnati, Ohio, for the past two years and will again compete on the One in Nine crew team at this year’s Head of the Charles Regatta, to be held Oct. 19-20. She recalled making the decision to delay surgery for the regatta two years ago. “Going into that race, I felt like I was in such good shape. I just wanted to go out with a bang, I guess.”

Marks says her lymphedema has done little to slow her down. In addition to rowing three days a week, she regularly cycles, jogs and plays on an adult soccer team. And although her physical therapist had outlined a list of approximately 18 ways to potentially prevent the disease–including not lifting more than 15 pounds and avoiding situations that might cause bruises or cuts–Marks says she has no regrets about ignoring them.

“They don’t really know who’s going to get lymphedema, and they don’t know how you’re going to get it,” says Marks. “My therapist told me all of the things I can no longer do, but my doctor wanted me to jump back into my old life as soon I could. I appreciate that because I’m now pretty much back to normal.”

Doctor Wants Safe Exercise Regime for Breast Cancer Survivors

Kaelin and her team of researchers are busy as rowers prepare for the weekend’s 38th year of competition on the Charles River in Boston. They have already interviewed close to 120 female rowers for their study, recruiting women who competed in the U.S. Rowing Masters National Championship Regatta, held in Occoquan, Va., in August.

Approximately 550 female rowers, including 350 who have never had breast cancer, will be interviewed about their medical history, workout habits, and bodies, as well as have their arms measured. Researchers will then interview 200 women whose breast cancer treatment included the surgical removal of the underarm lymph nodes, as well as take arm measurements from a random selection of 50. One year later, all 200 of those women will again be interviewed and have their arms measured.

Kaelin will be working with former U.S. Olympic rower Holly Metcalf to find rowers who continue to compete after being treated for breast cancer. Metcalf, who owns and operates the Row As One Institute, Inc. in Newton, Mass., recently started a pilot program called WeCanRow (Women Enduring Cancer Row) that was inspired by the One in Nine teams she has coached over the past three years. WeCanRow will be the new name of this year’s entry of breast cancer survivors competing in the Head of the Charles.

According to Metcalf, WeCanRow is a beginner’s rowing program for recent breast cancer survivors that “begins where surgery and physical therapy leave off.”

“I think the women who come into this program are really gutsy,” says Metcalf. “They love their support groups, but they’re tired of all the talk. They need to move on physically.”

For her part, Kaelin says she hopes that her study will slice through the murky waters lymphedema has long existed in.

“Rowing represents the extreme of upper-body repetitive activity,” says Kaelin. “So any other arm action would require the same or less effort. I want to show that breast cancer survivors can do these things safely and are not at risk for lymphedema, and, if they are at risk, to find out why so we can develop an exercise routine that works for them.

“What I want is for these women to regain their active lifestyles.”

Jeff Lemberg is a freelance writer living in Boston.