Sisterhood of breast cancer survivors leads the way

Sherry Stose was diagnosed with breast cancer nearly a decade ago, but she still recalls her gut reaction.

“You hear the words ‘breast cancer,’ and you think, ‘I’m going to die,’ ” Stose said. “Being diagnosed with breast cancer is like being in the middle of the ocean in a rowboat.”

She paused, then added: “With no oars.”

Throughout her treatment she had excellent medical care, but Stose said she lacked emotional support from a peer who already had faced cancer. She had so many questions, but no one to answer them.

Around the same time, the Vancouver-based nonprofit organization Pink Lemonade Project was founded with the purpose to educate, support and empower those affected by breast cancer. One of its first programs was Pink Peers, which trains breast cancer survivors as mentors to provide emotional support to recently diagnosed patients.

Stose volunteered to be trained in the first cohort of mentors. Since then, she has mentored more than 100 breast cancer survivors.

Eight years ago, when Susan Pagel was diagnosed with breast cancer, she also had many questions. Her breast reconstruction surgeon was Dr. Alan Gabriel, who founded Pink Lemonade Project with his wife, Dr. Cassie Gabriel. From him, Pagel learned about the nonprofit, which connected her to Stose.

“That first phone call from Sherry was life-changing,” Pagel said. “She answered a lot of my questions and talked me off the ledge. She’d had that same deer-in-the-headlights moment that I was experiencing. … Sherry has been there and done that. She sounded great. She was living her life.”

Recently Stose and Pagel sat together — although socially distanced — on a couch at Pink Lemonade Project’s office downtown. They began as mentor-mentee, but have become friends.

“It’s such a lonely feeling when you get the breast cancer diagnosis, but when you have that connection with your mentor, you aren’t alone anymore,” Stose said.

Pagel added, “Sherry has a calming presence. She assured me that I’m stronger than I think I am. These relationships are closer than family. It’s a sisterhood.”

Value of mentors

Since its inception, Pink Lemonade Project has matched more than 400 mentor-mentee teams.

Mentors are trained to be active listeners who offer support, but not advice. They allow the mentee space to ask questions and discuss their emotions. Some mentor-mentee relationships consist of one phone call to answer specific questions. For others, it’s a longer, more involved connection that might include the mentor accompanying the mentee to medical appointments.

Susan Stearns, chief executive officer at Pink Lemonade Project, said research backs up the value of peer support for breast cancer patients. Her own experience as a breast cancer survivor proved this to be true.

“During my recovery year, in some ways, my peer support was more critical than my medical support,” Stearns said. “Patients often feel lost. They’re emotional wrecks on hormonal roller coasters. Slammed into menopause. I sort of sobbed for six to nine months just to hold it all together. I couldn’t sleep.”

She added, “Your oncologist can only offer you more chemo, but there’s value in connecting with others who share this journey called breast cancer. In this messiness of trying to figure out what might work for you, peers are so important.”

Training mentors

All Pink Lemonade Project mentors are trained by Susan Hedlund, director of patient and family services at the OHSU Knight Cancer Institute. An oncology social worker for 40 years, she said caring for breast cancer survivors’ emotional needs has come a long way. Not long ago, few resources existed and women did not have a network for emotional support.

The benefits of the mentorship program go both ways, Hedlund added.

“The mentee benefits by asking practical questions: How did you tolerate this treatment? What side effects did you have? What helps cut the metallic taste in your mouth after chemo? The mentor’s benefit is a sense of giving back,” she said. “Being a mentor also gives them perspective on their own cancer journey. The result is the person with the diagnosis is much less afraid and is reassured.”

Pre-pandemic, mentors were trained in person during a three-hour session. Since the pandemic, mentors are trained remotely during a two-hour Zoom session including onlinebreakout rooms to role-play being mentor and mentee. Seasoned mentors provide feedback and offer advice for improvement.

In order to provide the best possible mentors for a variety of patients, Pink Lemonade Project is focused on diversifying its pool of mentors to span the spectrum of breast cancer diagnosis and cultural backgrounds. This includes recruiting and training more Spanish-speaking mentors and more women diagnosed with metastatic breast cancer, which spreads to other parts of the body and requires more complex treatment.

“There is value of people going through cancer with strong social support: family, friends and community. Pink Lemonade Project is that community of support and connection for people when they are digging out of the other side of treatment,” Stearns said. “Eventually, you get to the place where you feel strong, confident and are able to call yourself a survivor.”’

Susan Parrish: susanparrishwriter@gmail.com