When Sarah Siedschlag was diagnosed with breast cancer in October, she knew she had a lot of work to do. She spoke with her family, met with an oncologist, settled on a treatment plan and scheduled chemotherapy sessions.
But there was something else she knew needed to do. Within a week of her diagnosis, Siedschlag went online and filled out a “Get Support” form at Firefly Sisterhood, a Twin Cities-based nonprofit providing one-to-one emotional support for women impacted by a breast cancer diagnosis.
Siedschlag, 45, had worked with oncologists in pharmaceutical sales for a decade, so she’d heard about Firefly Sisterhood from them. The type of breast cancer she was diagnosed with — HER2- positive — is relatively rare (about one in five cases of breast cancer), and she wanted to connect with another woman her age who’d lived through a similar diagnosis. For Siedschlag, who lives in Minneapolis with her husband and two teenage daughters, this type of support felt as essential as the rest of her cancer treatment.
“There was a specific gap that I needed help with,” Siedschlag said, adding that she sees taking care of her mental health as important as taking care of her physical health. “I see a therapist. I have a yoga practice. I do acupuncture. I workout every day. I’m very supported externally and I feel like I do a lot. The one thing that was missing was to find someone with a similar experience to me. I knew it was important.”
Within 24 hours of filing out the online form, Siedschlag heard from Melissa Gruber, Firefly Sisterhood director of program development. After an hour-long phone consultation, Gruber matched Siedschlag with Jen Swanson, a 39-year-old working mom from Chanhassen who’d completed treatment for HER2-positive breast cancer in 2018 and served as a peer-mentor guide, or a woman who’s experienced breast cancer diagnosis and treatment and is trained to provide one-on-one support and inspiration.
A couple of days later, Siedschlag and Swanson were talking on the phone. For Siedschlag, the connection felt like a lifesaver.
During their conversations, Siedschlag said that she’s appreciated Swanson’s first-hand knowledge of what it feels like to go through treatment for their particular type of breast cancer, which commonly follows a treatment regime known as neoadjuvant chemotherapy, where chemotherapy drugs are administered first to shrink or eliminate the tumor, followed by surgery. This approach is different from more typical breast cancer treatment, which often begins with surgery to remove the tumor, followed by chemotherapy and/or radiation.
Swanson, Siedschlag said, has been able to help with, “Even the little, nuanced stuff. I’m still trying to figure out how much time do I take off of work after a double mastectomy, or food recommendations for getting through chemo.”
It also helps that Swanson is also a busy mom with two children.
“I think that what was so helpful for me was to hear from someone who already did what you’re getting ready to start to do. She’d gone through her chemo, her MRI, her surgery. To hear her reassure me that I can do this, how she was able to juggle being a mom and going back to work after she took time off. I felt so much support and a lot of reassurance and comfort when talking to Jen.”
Even little tips from Swanson, like the recipe for a golden latte with turmeric that helped her make it through chemo, were welcome, Siedschlag said.
“She said that turmeric is a healing spice and it just tasted good. It helped me to have the routine of making it every day. With cancer, you can feel out of control, so just having one little thing that you can do for yourself every day helps. I never would’ve done that with her. She’s really helping me make it through this experience.”
‘Part of my own healing journey’
Swanson, who was just 35 when she was diagnosed with breast cancer, said understands exactly how Siedschlag felt when she got her own diagnosis. Though she knew plenty of other women who’d had breast cancer, Swanson didn’t know anyone else in her shoes. Most women diagnosed with HER2 positive breast cancer, or any form of breast cancer for that matter, are usually older than she was at the time of her diagnosis, and she really wanted to find someone who shared the same experiences, who could give her tips, support and hope for her future.
“I’m a relatively young breast cancer person,” Swanson said. “I didn’t have a ton of people who I knew to ask questions of.” In fact, Swanson’s situation was so rare that Firefly Sisterhood couldn’t even find a woman who was a perfect match.
Instead, Swanson “lucked out” when a friend connected her with another woman her age who shared many of her experiences. “She didn’t have the same type of cancer as me, but she was going through breast cancer at the time,” Swanson said. “She lived near me. She had younger kids like me. We were able to really support each other.”
Swanson felt that connection was so important to her treatment and recovery that as soon as her cancer treatment was complete in 2020, she volunteered to be a Firefly Sisterhood peer- mentor guide. She wanted to be able to provide support to other women experiencing breast cancer, especially those whose situations are similar to hers. As soon as Swanson completed her training, the requests for support started rolling in.
“I was matched pretty quickly,” she said. “It was a strong match. This individual was in my neck of the woods, had the same type of breast cancer that I had and had three young kids. She was a working mom, too.”
The matching process is handled carefully, explained Amy Gallagher, Firefly Sisterhood executive director.
“Our matching is very intentional,” Gallagher said. “Our program manager will go through our database and find someone who has gone through the same type of chemo or radiation. We’ll try to match with someone very similar in age and lifestyle to make it the best match that we can.”
Support seekers can be recently diagnosed, or can have experienced breast cancer in the past. “You could have had it five years ago and are just now re-living the trauma,” Gallagher said. “It could be 20 years later and you decide you want to be a peer mentor guide. Or you could be newly diagnosed. Any woman who has been impacted by breast cancer at any stage can be involved.” Interest in Firefly is growing, Gallagher added: Requests for support went up 27 percent in 2020.
Like Swanson, peer mentor guides are all volunteers. “They have to be six months out from treatment,” Gallagher explained. “Even six months it is still pretty fresh in your mind.”
Once the interview process is complete, Firefly reaches out to a guide to ask if they’d be willing to make a match. “Melissa sends an email to both parties introducing us to one another,” Swanson explained. “It is up to the guides to reach out — whether that’s meeting at a coffee shop or scheduling a Zoom call or a time to talk on the phone.”
The first phone call is often the most important, Swanson said.
“We’ll usually have a pretty long discussion. What I’ve found is that the people who are going through their cancer journey have a lot of questions up front. Some are one and done, and then other people want to stay more in contact.”
Being a mentor guide is a big job. So far Swanson has worked with approximately eight women, each requiring varying degrees of commitment.
“Some turn more into a friendship,” she said. “What I found is that the majority of my matches have wanted that first conversation or ‘data dump,’ and then one or two things after that. People who have wanted more of the ongoing conversation and guidance have been the ones I’ve met in person.”
Though it’s still fresh in her mind, Swanson said that her work as a peer mentor guide rarely brings up bad memories of her own cancer treatment.
“I’d guess that the majority of guides wouldn’t volunteer if it was painful for them. I actually find it therapeutic. It’s part of my own healing journey, and I know that everything I share is going to help someone else on their own journey.”
Birth of a Firefly
Initially an initiative of General Mills, Firefly Sisterhood was created in 2014. “They wanted to do more than the Yoplait lids,” Gallagher explained about the long-running and now-defunct fundraising effort that involved a donation to a breast cancer organization for every pink lid that consumers mailed back to the company.
The organization continues to grow, Gallagher said.
“Since 2014 we’ve matched over 2,000 people and we’ve trained over 360 guides. Currently we have about 157 guides and this last calendar year we matched 275 women,” said Gallagher.
The organization is based in Minnesota, as are most guides, but Gallagher, who’s been in her role since April, said that there are plans in the works to make Firefly Sisterhood a national organization.
Gallagher, who has a family history of cancer and underwent an elective double mastectomy and hysterectomy at age 32 after testing positive for the BRCA gene, would like as many women as possible to benefit from the support of a Firefly Sisterhood peer mentor guide. Mutations of the BRCA gene increase risks of several cancers — most notably breast and ovarian cancer, according to the National Cancer Institute.
“Something like this would’ve helped me,” she said, recalling her months of recovery after her procedures.
Primarily operating in the Twin Cities, most participants hear about Firefly through word of mouth. Gallagher wants to expand the organization’s reach.
“I think we have an opportunity to go into the rural areas and diversify, too,” Gallagher said. “I was on the radio in Alexandria and we had three people who called up after me being on for just three minutes. The need is clearly there. We want even more women to know that we exist.”
After her cancer treatment is completed, Siedschlag plans to become a peer mentor guide.
“I know how it helped me and I’m all about giving back in this journey and helping anyone who’s struggling. This is a hard time. I want to ease someone’s mind and help them on their journey. If I can help people, it makes it a little easier for me to keep fighting.”