When registered nurse Bonnie Morcomb’s breast cancer was diagnosed, even she felt overwhelmed by emotions and the difficult choices she had to make.
Her network of family and friends rushed to her side, but Morcomb wanted to speak to someone who had battled back from breast cancer. She wanted to discuss the details of treatments and hash out the difficult decision of whether to remove just the lump, or one breast, or both. She want to do that without further traumatizing her loved ones.
Morcomb turned to the Firefly Sisterhood, a support group that paired her with a breast cancer survivor to talk through treatment options and the emotions surrounding them.
“There are so many decisions to be made and there is a lot you don’t understand,” said Morcomb, a manager in the health care industry. “Most of us have a desire to understand what will happen and to talk to someone who has walked in our shoes.”
The St. Louis Park nonprofit started in 2014 and has since matched 740 breast cancers patients with mentors who have survived breast cancer. Demand for mentors has increased 61 percent this summer. Reasons for the spike are unclear, but word of mouth is a likely contributor.
“Women can be really honest in these matches, and talk about fears and anxieties in ways they can’t do with friends and family,” said Jenny Cook, Firefly program manager. “They don’t want to scare their children or their spouses.”
It’s also another option outside of the conventional group model.
“For some folks, having that group is really helpful,” Cook said. “For others, it’s really difficult. For one woman, it actually fueled a lot of anxiety and depression to hear everyone else’s war stories.”
Breast cancer is the most common cancer in women, according to the U.S. Centers for Disease Control and Prevention.
About 1 in 8 women will develop breast cancer in their lifetime and about 41,000 women will die from breast cancer this year, according to the American Cancer Society.
Minnesota ranks an ominous 8th nationally in the rate of new breast cancer cases per 100,000 women, according to the CDC.
Learning how to listen
General Mill’s Yoplait yogurt brand donated three years of startup funding to Firefly after research and focus groups indicated a need for personalized one-on-one mentorship.
“There are so many types of breast cancer and treatments are so personalized,” Cook said. “Women are often given a variety of choices, especially around surgery.”
The results of these decisions can be visible and life-changing.
“For many [women], it’s so tied to femininity and our gender identity in general,” said Cook, of the decision to keep or remove a breast.
Most women find Firefly through their clinics or friends who recommend the program.
“Many of my patients find their organization simply extraordinary,” said Dr. Anne Blaes, a hematologist and oncologist at the University of Minnesota.
“A patient can talk to someone one-on-one about how they made their breast cancer decisions and how they manage things. They are able to have someone listen to them about all they are going through. They are also able to provide practical tips for individuals, such as symptom management.”
The nonprofit has four employees and a $210,000 budget. They respond to e-mails and calls within 24 hours, 365 day a year, Cook said.
All mentors go through ongoing training. They learn how to listen and ask questions. They learn what to say and what not to say, said Cook, who is an occupational therapist. Mentors do not, for example, offer medical advice, or endorse or recommend any doctors, clinics or treatments.
Patients and mentors are matched based on personality and specifics of their case. Some women prefer to speak with someone close to their age. Others seek out someone with a similar diagnosis. Some women have very specific questions around a certain treatment option. Some of it is “old school matching,” including looking at hobbies, spirituality and family situations.
The way pairs communicate also is tailored. Some women rely on phone calls and e-mails from their mentor. Others choose to meet face to face.
Many women say the mentorship eases the emotional toil on their loved ones as the treatment process, often including chemotherapy, radiation and surgery, can span months.
“Friends and family can get burned out over time,” Cook said.
Firefly matches typically last four of five months, but some are longer. Others are as short as a single phone call. Oftentimes, women crave support at the end of treatment.
“When women finish treatment, everyone is ready to celebrate and move forward, but that transition into survivorship and life after cancer — it’s really challenging,” Cook said.
Morcomb’s breast cancer diagnosis in the spring of 2015 came less than a year after what she was told was a clean mammogram. After Morcomb felt a lump, a biopsy in the spring of 2016 confirmed her fears: Stage Two breast cancer. A second look at the mammogram confirmed it was there all along.
“My initial reaction was anger. I was in shock that whole day,” she said. “When I called my daughter, we both cried.”
As Morcomb started to learn about her specific type of cancer and all the treatment options available, she wanted to talk to someone who had been there.
“Your first instinct is to cut them both off,” said Morcomb, gesturing to her breast.
But whether to remove just the tumor, or the entire breast, is the “hardest decision,” she said. Will the cancer come back if I keep my breasts? Will my husband still find me attractive if I remove them? How would a mastectomy change my own body image?
The latter is a question many cancer patients wrestle with quietly.
“You don’t want people worrying with you if you don’t have to,” Morcomb said.
Her Firefly mentor was about her age, with a similar diagnosis. They were able to talk weekly about treatments, including side effects and how to make the difficult decisions. They still talk today.
That partnership, she said, “helped me make my decision.”
Morcomb chose to remove just the lump and undergo radiation and chemotherapy. She now is in remission, back to work and reveling in her twin granddaughters, born this summer. Morcomb has become a Firefly mentor.
“You are there to be a sounding board and, maybe, explain why you made a decision,” Morcomb said.
“There is so much hope. It’s amazing.”