If you get breast cancer, experts say being physically active is one of the key ways you can improve your health. Regular exercise can lessen certain side effects of chemotherapy and hormone therapy treatment, like fatigue and joint pain, lower your chance of developing lymphedema, and reduce the risk of recurrence.
Doris Piccinin, director of the Physical Activity Group for Breast Cancer Survivors at Abramson Cancer Center, wearing a T-shirt designed by a participant in the early days of the group.
But breast cancer treatments, while life-saving, can throw a wrench into a fitness routine. Doris Piccinin, MS, RD, LDN, a clinical dietitian at Penn’s Abramson Cancer Center (ACC), experienced this first-hand after she herself was treated for early-stage, high-risk breast cancer at Penn Medicine.
When she tried to exercise like she used to, Piccinin, a fairly active person her whole life, encountered one barrier after another. An aggressive course of treatment — a lumpectomy, chemotherapy, and radiation, plus two drugs targeted for her type of cancer — had left her with reduced range of motion on the side where the cancer had been; temporary neuropathy (a type of nerve damage) caused by chemotherapy that caused pain and swelling in her feet; joint pain, and an extra 15 pounds she could not shed. A 25-mile bike ride that she had previously completed in two hours took nearly three hours to finish.
It took Piccinin another year, but she was able to get back to her previous exercise levels with help from Penn’s Strength After Breast Cancer physical therapy program. So in the spring of 2020, when the Patient & Family Services team at the ACC was brainstorming ways to support breast cancer survivors at home during the COVID pandemic, Piccinin offered to host a virtual physical activity support group to encourage patients to keep moving, even when it felt really hard.
“It takes a toll on your self-esteem. You’re trying to lose weight — you know in the back of your mind that the number one thing to prevent recurrence of your cancer is to lose weight, because fat cells make estrogen, which fuels the cancer — and the American Cancer Society guidelines say you should exercise 150 minutes or more per week, but you’re just not able to do that,” Piccinin said. “You feel like you’re being a bad patient, but you’re really struggling.”
She recruited another dietitian and the breast cancer nurse navigator with the ACC to co-lead the group. Recently, Piccinin added a physical therapist and a medical student to help lead discussions.
The meetings attract a small group of participants each month. Patients share their strength and fitness goals and their individual obstacles, whether it’s a physiological limitation, such as lymphedema — a swelling condition that can result after lymph nodes are removed during cancer surgery — or a logistical one, like their gym closing due to the pandemic. Piccinin invites guest speakers to talk about different aspects of life after breast cancer and lets the group know about unique fitness opportunities for breast cancer patients like the Hope Afloat Dragon Boat racing team in Philadelphia’s Fairmount Park and Casting for Recovery national fly-fishing retreats.
The meetings are solutions oriented, which sets them apart from other support groups, said a patient named Tara, a college professor in her 50s who joined a few months ago.
Susan Von Dollen on a hike in late 2019.
“I want to talk about what I’m doing, not how I feel about having cancer. I want information, and that’s what I get,” she said. Through the group, Tara learned that exercise was important for keeping her bones healthy, as estrogen blockers can reduce bone density and raise the risk for fractures.
The group welcomes patients at every stage, whether they’re newly diagnosed, in the middle of treatment, or have been finished with treatment for a few years. There’s no judgment about fitness levels; patients are encouraged to set realistic physical activity goals, whatever that means for them.
Susan Von Dollen, an audiologist in her early 40s, was referred to the group about six months after completing radiation and going on Tamoxifen, an estrogen blocker, to treat her pre-invasive breast cancer. While her radiation-oncology team was thrilled with her scans, Von Dollen couldn’t get her mind off the 25 pounds she couldn’t seem to lose.
“No matter how little I ate or how much I exercised, I wasn’t able to lose the weight,” Von Dollen said. “I was working out every other day with a personal trainer, eating salads, and not drinking anything other than water — things I know were not sustainable, but I just wanted to get the scale down — and here I was, at my heaviest. It didn’t feel good.”
A group member who had faced a similar struggle encouraged her to shift her mindset from losing weight to getting stronger. Von Dollen invested in some professional resistance bands to build different muscle groups and has seen an improvement in her posture, which tells her the muscles are strengthening. She’s hopeful the difference will start to show up on the scale as well, but she now has more patience with herself.
“The group helps me feel like it’s worthwhile not to give up. If I hadn’t experienced that sense of community, acceptance, and the hope it gives me for getting strong and healthy, I probably would be stocking up on muumuus and snack foods instead of investing in resistance bands and exercise,” Von Dollen said. “There’s a point to this struggle, and just because it’s hard, doesn’t mean it’s not manageable.”
Piccinin, center, with group members Linda Wynne, left, and Sharon Kanis, right, on a bike ride in the summer of 2020.
In the summer of 2020, Piccinin and a few other group members together completed a 20-mile virtual Breakthrough Bike Challenge supporting research at the ACC. While Piccinin would love to lead a team of breast cancer survivors on another ride someday post-COVID, that’s not her primary goal.
“We’re connecting breast cancer patients with resources so they can exercise, even if it’s 10 minutes walking down the block,” Piccinin said. “I’m excited to see a lightbulb go on for people when they realize that not all physical activity is the same, and to see them recognize and understand the questions to ask when they’re having limitations. That’s where I gain my inspiration.”
The virtual Physical Activity Group for Breast Cancer Survivors, one of several support groups offered by the Abramson Cancer Center, meets the fourth Monday evening of the month. For more information and to register, contact Doris Piccinin at Doris.Piccinin@pennmedicine.upenn.edu or 215-360-0581.