Susan Steel ignored a mole in 2005.
The Chicago resident and mother of two said she put it off but eventually went to her dermatologist only when the mole began to bleed. The first visit confirmed she had melanoma and the growth needed to be surgically removed.
“You go into surgery very quickly and then the surgeon comes out and looks desperate and tells you that you have less than a year to live,” she said.
At that time there were no effective treatments, some options had a “high” 6 percent chance of survival, Steel says.
The American Academy of Dermatology estimates there will be 76,000 new cases of melanoma diagnosed in the U.S. this year. It is the most common form of cancer in young adults and often affects pilots and veterans returning from high sun exposure areas. Pediatric cases have also increased by 30 percent in the last 10 years
Steel’s not-for-profit Skin of Steel has opened the Melanoma Tissue Bank with UPMC, the first of four branches where tissue samples will be collected and fresh-frozen for future study.
She was ultimately selected for a clinical trial where doctors cultivated response cells, and she was quarantined as her immune system shut down until they could use the response cells to fight the cancer.
She was injected, told she didn’t have a high enough response to continue with the trial and she had nine months to live.
“Then I came home and got ready to try to figure out how to wrap things up. But the irony is I didn’t die,” she said.
She got into another clinical trial, spent more time with her kids, went on trips, joined a crew team, and then her doctor discovered Brain metastasis. This time surgeons used a Gamma Knife, created by UPMC, to surgically fix a helmet to her head and target cancer cells with radiation.
After she made it out of that surgery, Steel decided she needed to start an advocacy group to find a cure for melanoma.
Melanoma is the fastest growing cancer in the world, yet melanoma research lags in comparison to other aggressive cancers. While on clinical trials, Steel was repeatedly told of the need for melanoma tissue samples.
“That patient has to first be told they have melanoma, educated about what melanoma is, and then they have to have the wherewithal and the courage to make that decision that they’re going to donate part of their tissue to research,” Steel said.
She says the samples will result in a more strategic approach to diagnostics and medicine.
“We should be able to provide researchers with an incredible amount of information; information that has a national domain as opposed to a regional domain that will be very, very valuable in pushing melanoma research and treatment to the next stage,” she said.
The not-for-profit has raised funds and determined protocol over the last two years. It cost nearly $1 million to open the Pittsburgh branch, including setting up a data collecting system for the other still-proposed branches to share, and $2.5 million to open the last three.
“First you have to have the money; flying people back and forth to get them together in one room to design the science behind it. What is the science going to be and what are the rules going to be, so that we fit FDA regulations?” she said.
Steel has a goal of collecting 500 samples with 125 from the branches in Chicago, Portland and San Francisco as well as Pittsburgh.
