Jennifer Merschdorf and her mother were diagnosed with breast cancer the same year. “The issues we faced were very different,” says Merschdorf, who is now CEO of the Young Survival Coalition (YSC). “She was retired and already had a family. Meanwhile, I was climbing the professional ladder, was newly married, and had hardly been in a hospital before my mom was diagnosed.”
Like other young women with breast cancer, Merschdorf faced challenges unique to her age. Women under 40 are not only often diagnosed with more aggressive breast cancer than older women, they have to cope with the impact the disease has on their careers, finances, relationships, fertility and families. “After a bilateral mastectomy, you can barely lift a glass of water, much less a small child,” says Merschdorf.
When Merschdorf wasn’t initially sure where to turn to cope with her diagnosis, close friends urged her to reach out to YSC. “I walked into that YSC support group and those women changed my life,” she said. For the first time, she didn’t feel isolated, unable to relate to older women with the disease. Instead, she could share stories, frustrations and victories with women who were going through a similar experience—or who had come out the other side.
Founded in 1998, YSC offers these young women opportunities to meet in groups in person, at conferences and online. The group also advocates for initiatives that focus on increasing the representation of young women in breast cancer research. Last year, YSC worked with more than 8,000 women under 40 diagnosed with breast cancer.
The organization is also dedicated to continuing its support and education programs for young women facing metastatic breast cancer, an underserved community that faces particularly difficult challenges.
As YSC grows, says Merschdorf, “We’re constantly reaching further, engaging more and changing more lives.” Looking ahead, YSC is expanding to support those family and friends who are closest to the young women with breast cancer, dubbed “co-survivors” because they’re fighting for someone they love.
YSC was the first organization to address the specific needs of young people with cancer. When Genentech became a YSC funder in 2003, awareness and support for this issue were still very limited. Since then, Genentech has supported YSC’s efforts to increase visibility and build community through their national summits, regional symposia and online support groups.
Here, four young women share their own stories about breast cancer and finding YSC.
“The moment my breast surgeon called to tell me that my biopsy was cancerous, my life went on hold—but my family’s lives didn’t. At 38, I was facing my mortality, but my husband still had to go to work, and I still had to juggle our home life, making lunches, getting my youngest to preschool, and my oldest off to school. It’s a weird feeling, like standing still in the middle of the highway, with everything rushing past you. When you’re young, you’re not thinking about the end of your life, you’re thinking about starting your life. You’re thinking about your children growing up, getting married someday, and all of a sudden, that stops short. In some ways, it was a wake-up call that forced me to look at how I wanted to live the rest of my life.
One of my biggest challenges was that my friends had no idea how to help me. At that age, we don’t have a lot of experience with serious illness, and so they withdrew. There are lots of books about how to be a good caregiver or handle a cancer diagnosis or be a mom to a child with cancer, but none about how to be a good friend, so I wrote that book. That’s how I got involved with the Young Survival Coalition—a few of my friends who were breast cancer survivors kept saying to me, ‘You’ve got to come.’ I ended up speaking to the group, and it was the first time since I’d been diagnosed that I’d been in a room full of people where I didn’t have to explain anything. At YSC, some women have been through it already and can shepherd you through the process, some are exactly where you are, and some are earlier on. It’s a sisterhood, where you can see the continuum of life before, during and after cancer. I can’t explain the level of hope that instills in you. Basically, YSC is hope spread across the country.”
–Jenn McRobbie, 42, is a life coach, speaker and the author of Why Is She Acting So Weird?
“My grandmother is a three-time breast cancer survivor. My aunt was diagnosed at the same time as my grandmother, the picture of health, and died 45 days later. Because of my family history, I started having tests at a young age. In 2015, despite a clean mammogram, I found a knot in my breast. It was cancer, and the county Medicaid hospital suggested chemo, but I called around until I found a doctor who would do a mastectomy even though I didn’t have the money. It was a good thing, because she found four large tumors in one breast. Older ladies are more established with money and security, but I was young and didn’t even have insurance. Since I’m in a same-sex couple in Texas, I had to deal with issues where my partner couldn’t come to appointments or be with me in surgery, the way they let boyfriends do. My partner was a major support, but when I found YSC I could find someone else sweating about figuring out life and death. Now, as a volunteer I make sure the women who look like me do not have to go through what I went through, and we’re bridging the gap between hospitals, doctors and patients. We go out in the community and advocate that young women, black women, gay women, rich women and broke women get breast cancer, and we are here to help you through it.”
–Nikki Triplett, 38, is one of YSC’s Texas state leaders and completed the Avon 39-mile walk for breast cancer just days after finishing radiation.
“Family, fertility and dating are also very important to many young women with breast cancer, and these issues aren’t always addressed by the medical community. When I was diagnosed at 35, my doctors didn’t talk to me about what that meant for my fertility or what my options were. Women who are diagnosed in their 30s are at the peak of their sexuality and reproductive lives and then, all of a sudden, face treatments that drastically change their hormones, and it’s difficult to deal with. There’s very little written about the issues we face. The Young Survival Coalition is an invaluable community where young women can have important conversations about sexuality, intimacy, vulnerability, finances, long-term planning and all the psychological issues that go along with receiving a cancer diagnosis and being a cancer survivor. It has been an incredible experience to meet smart, capable, strong women who are also trying to navigate their work, families and everything they’ve always dreamed of doing while accommodating and managing the limitations that go along with being diagnosed or in the middle of treatment.”
–Alpha Lillstrom, 41, is a healthcare policy advocate who was diagnosed with breast cancer in 2011; her son, Calder, was born from a surrogate in 2017.
“Being diagnosed with breast cancer at a young age is surreal. I was 33, one year into a new job, living with my parents in Houston and our two dogs. Meanwhile, my husband was in Tulsa with our two cats, our house was on the market, and it came as a complete shock. I began to question if I was making the right decisions and worry about letting other people down, especially career-wise, where other people have to take on your responsibilities. I couldn’t be there for my employees, my family or my friends. I started treatment and had to let go of some of that responsibility. My mom and my husband found a cancer support group and pushed me to go. I was the youngest person there and felt as though I had nothing in common with them. I found YSC and lurked on the discussion boards and then went to some events. I soon realized that this was a place to share what you were going through, your fears and frustrations, and have a sense of belonging. Today, when I tell women in the group that I’m a 12-year survivor and seven years cancer-free, it gives them a sense of hope. They may be feeling miserable and scared, but they can focus on someone who’s doing just fine.”
–Michelle Piña, 45, is an educator, bicyclist in the Tour de Pink and a Texas state leader with YSC.