Super Patient: Patient Advocates Help Susan Steel Win Admittance to Clinical Trials


Update:  We are deeply saddened to report that Susan passed away on January 13, 2016. It is a privilege to continue to share her story and keep her memory alive.

When Susan Steel first noticed the mole that derailed her life ten years ago, she was busy raising two children and running two businesses. “I just wasn’t paying attention,” she says. It wasn’t until the mole grew and started to bleed that she finally saw a doctor—and then she was hit with the news that she had melanoma and that it had spread to her lymph nodes.

“My life changed very fast,” Susan recalls. “I was told that my chances were very slim and that I should get my affairs in order.”

But this pronouncement didn’t sit well with her. “I needed to do my own research,” she says. “I don’t assume there is only one answer.” While she knew nothing about melanoma, her experience in market research had trained her not to be intimidated by things she didn’t yet understand.

Susan enlisted the help of two friends, who threw themselves into learning about melanoma research and became her patient advocates. “People want to help, they just don’t know how,” she says. “You have to figure out your strengths and weaknesses and ask people to supplement where needed.”

The search for more options took Susan from her home in Chicago to the National Cancer Institute in Maryland. “I got an invitation to interview for a clinical trial—you present your case and sell yourself as a candidate,” she says. “It led down a path that would almost kill me.” Three years and three clinical trials later, the melanoma had spread to her liver and spleen.

Her doctors gave her less than a year to live.

That was in 2008—seven years ago—and Susan has continued to survive time and again. Part of it was her perseverance. “I needed to live as long as possible because my kids were so young,” she says.

And part of it was luck. “I survived long enough to participate in new, more effective clinical trials,” she says. These included one for Yervoy, an immunotherapy treatment, and another for Zelboraf, which targets tumors that, like Susan’s, have a mutation called BRAF. Both drugs went on to win FDA approval for metastatic melanoma in 2011.

Getting into these trials took some doing. “I was very sick,” she says. “My friends advocated for me during meetings with doctors for trial consideration.” Another hurdle was that the melanoma had spread to her brain, and the trial protocols required her to be free of brain tumors for two months before starting treatment.

Her luck held again. Susan had brain surgery in late 2009, and stayed free of brain tumors long enough to begin her next series of clinical trials in early 2010. But the Yervoy trial left Susan with melanomas growing in her liver, spleen, and lungs, and the Zelboraf trial kept most of her body cancer-free but left her with more brain tumors.

So in 2011, after several more rounds of brain surgery, she began yet another clinical trial, this time for a promising experimental immunotherapy drug called a PD-1 inhibitor. And so far, so good. Susan completed this trial in 2012, finished the post-trial maintenance treatment early in 2015, and now goes in for quarterly scans.

Being in so many clinical trials has given Susan a unique window into melanoma research. “I saw the frustration of the research community over the lack of fresh-frozen tumor tissues,” she says, explaining that such tissue banks are key to understanding how cancers start, as well as to testing treatments for cancer.

To help establish a national melanoma tissue bank, Susan founded Skin of Steel in 2011 to raise money for the cause. The first of four planned branches will open in Pittsburgh, Pennsylvania, this year. Says Susan, “Our goal is to find a cure.”

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Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.