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Young Breast Cancer Survivors Empowered Through Advocacy and Education

“It was frustrating always being the youngest one in the waiting room, combined with the fact that there is just not a lot of data on this population. So, we are forced to make decisions in the absence of hard data. It’s frustrating to know that we’re the neglected cohort of the disease,” Petrides said.
BY Brielle Urciuoli
PUBLISHED December 11, 2017
When Michele Hille attended her first breast cancer support group after being diagnosed at age 40, she walked into the room and felt that she had almost nothing in common with the women there.

Kate Petrides, diagnosed at the age 25, and Dana Stewart, diagnosed at 32, reported similar experiences. 

“Just being the youngest person in the support group, at the doctor’s office or in the infusion room, I couldn’t relate to anyone,” said Stewart, now 39, an international brand manager in an interview with CURE. “I really felt like an outcast.”
 
But that changed for the three women after they discovered the Young Survival Coalition (YSC). Together, they attended the 2017 San Antonio Breast Cancer Symposium (SABCS) through the YSC’s RISE (Respected Influencers through Science Education) program. RISE focuses on empowering young survivors through education and advocacy.  

At the meeting, the women were able to meet key opinion leaders in the breast cancer space, learning about both the scientific and advocacy advancements being made for their disease.

“It was frustrating always being the youngest one in the waiting room, combined with the fact that there is just not a lot of data on this population. So, we are forced to make decisions in the absence of hard data. It’s frustrating to know that we’re the neglected cohort of the disease,” Petrides said.

While premenopausal women with breast cancer seemed to have been be understudied in the past, this year’s SABCS conference suggested a positive shift in the other direction. One of the major topics presented by researchers at SABCS was temporary ovarian suppression to preserve fertility in premenopausal women with breast cancer. Another trial was the first to test CDK4/6 inhibitors in younger women, potentially paving the way for promising treatment options that this group of patients did not previously have.

“There are quite a few clinical trials happening in the cancer world to help young adults with fertility. I didn’t even know that stuff was out there, so I didn’t do anything fertility-wise. I didn’t even ask,” Stewart said.

But now, asking questions, staying informed and being an active participant in their health care decisions is vital to all three women – and they encourage others to do so as well. Dana Stewart also shares her personal experiences with readers in periodic blog posts in CURE’s Contributors’ Voices section, in an effort to help others gain insight into the cancer journey.

“Empower and educate yourself,” Hille, now 44, said, mentioning the National Comprehensive Cancer Network (NCCN) guidelines, which provides the latest best practices. “Don’t just accept what your physician says. Do your research.”

Petrides echoed her Hille’s thoughts.

“We’ve been programmed that there is a paternalistic relationship between doctor and patient. I think it’s really important to take a pause. When you’re first diagnosed, everything is crashing down on you and you’re overwhelmed and want to act quickly because you have this thing growing inside you that you want out,” Petrides, now 31, said. “Really advocate for what you want out of treatment.”

For some women that might be preserved fertility, for others it might be a mitigation of a certain side effect, such as neuropathy or fatigue. Others might just want to come out with the lowest possible risk of recurrence.

The YSC helps young survivors be advocates for themselves not only in the doctors’ office, but in policy, too. As a subset of a larger group, the National Breast Cancer Coalition, members of the YSC took to Capitol Hill this May, where they spoke to their representatives about health care policy and access to care.

“To participate in government on that level is really important. I never thought I would do that, but now I really like it, and I can’t wait until next year,” Hille said. “There are organizations out there that can help you find your voice. The YSC has been my home.”
 
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