LEWISTON — In 2011, doctors discovered a tumor behind a cyst in Barbara Deschenes’ breast.
She was 55. It was cancer.
“I was devastated when I got my diagnosis,” she said. “No one expects to hear the words, ‘You have cancer.’ It caused me to do a lot of seeking out of support.
“I’ve always been an outgoing person, a community-driven person. But then you get diagnosed with cancer and it’s just a whole new thing. You sort of step outside your body and say, ‘OK, now what do I do?'”
In Norway, where Deschenes had lived for more than 30 years, there was precious little support for cancer patients, outside of friends and family.
In other parts of Maine, cancer centers offered support groups and complimentary therapies, such as massage. They also helped navigate the complex, scary world of a cancer diagnosis.
But Norway had no center like that. So Deschenes helped start one.
On Saturday, she will be honored for that work and for her statewide advocacy on behalf of women and breast cancer patients.
The Dempsey Centers named Deschenes the winner of the 2018 Amanda Dempsey Award.
“I never thought I would win,” she said. “I don’t even think of it as winning. I’m just so honored to be able to have found a way to give back and to help other people.”
Named in memory of Amanda Dempsey — mother of actor Patrick Dempsey and the inspiration behind the Lewiston-based Dempsey Centers — the award is given each year to a cancer survivor who has a passion for helping other cancer patients in Maine. It is presented during the weekend of the Dempsey Challenge, the Dempsey Centers’ largest fundraiser.
Deschenes knows the Dempsey Centers, which provide free support, education and complimentary therapies to cancer patients and their families. Because there was no such center nearby when she was diagnosed, she often traveled to Lewiston to the Dempsey Center. She called it “life-changing.”
“You know, you have your family and your friends that can support you, but you really — I really — needed to be around other people (with cancer),” she said. “I called them ‘my people.'”
At the time, the Dempsey Centers had one small location, but it was the place where Deschenes could get a massage, have a Reiki session, participate in yoga, talk with others dealing with cancer, get a hug when she needed it.
“Even though they were small, the impact was huge,” she said.
The Dempsey Centers served as her inspiration for the Cancer Resource Center of Western Maine in Norway.
“Cancer, it’s a scary, confusing thing, and a journey that no one should have to face alone,” Deschenes said. “I learned quickly how important it is to have a strong support system.”
The Norway center began operating in 2014, and became a registered nonprofit in 2016. Today, it has more than 30 volunteers and serves 40 or so people per month through support groups and activities, handmade comfort items, a lending library, and yoga.
Deschenes did not stop with the center.
Since her diagnosis, she has helped lead the effort to inform Maine women about dense breasts and how that condition can hamper a mammogram’s detection of cancer.
Deschenes had dense breasts, and although she had had regular mammograms, including one a month before her cancer diagnosis, her cancer was discovered only when she had an ultrasound to look at a cyst. Behind that cyst was a 5-centimeter tumor.
After that, Deschenes twice helped bring a bill to the Maine Legislature on patient notification. She testified about her own cancer experience and urged lawmakers to require doctors to tell women about their breast density after a mammogram.
Although that bill was not successful, a task force was formed. That group ultimately recommended to Maine radiologists, hospitals and others that patients be told about their breast density.
It is unclear whether Maine women are better informed about dense breasts and mammograms now than when Deschenes was diagnosed, but she felt compelled to try.
“It’s the best-kept secret,” she said. “Everyone needs a mammogram. If you didn’t have a mammogram, you wouldn’t know how dense your breasts are. But mammography is not the end-all. If you have dense breasts, you need to have a conversation.”
“I was 55,” she added. “I was (in) perimenopause. I didn’t have a family history, but I had a lot of things going on in my life where a conversation would have been a really good thing to have with somebody before we found a tumor of that size.”
Deschenes will formally accept the Amanda Dempsey Award on Saturday at the Champions for Hope Celebration, which also recognizes the fundraising efforts of Dempsey Challenge participants.