The National Coalition for Cancer Survivorship began in 1986 with 23 people at a hotel in Albuquerque and a $100 contribution from Patricia A. Ganz, who recalls thinking: “I don’t think I’ve ever invested in anything that was so good.”
“These were just the baby steps,” Ganz, distinguished professor of health policy and management in the Fielding School of Public Health, distinguished professor of medicine in the David Geffen School of Medicine at UCLA, director of the Center for Cancer Prevention & Control Research at the Jonsson Comprehensive Cancer Center, and editor and chief of JNCI said to The Cancer Letter. “They decided they would try to get a bunch of people to come together who might be interested in this problem of post-treatment survivors and what they were experiencing.”
The meeting was partially convened by Fitzhugh Mullan, a physician who self-diagnosed his own germ cell tumor and published a landmark paper in The New England Journal of Medicine on the seasons of survival. He “focused on the fact that when he was treated, people didn’t expect him to live,” Ganz said.
“We were beginning to see cures in these diseases, and people felt lonely and left out, and then they went to their doctor, complaining about things, they did not receive any answers. I was the only physician who was there, aside from Mullan,” she said.
They were joined by Catherine Logan, who had led a support group for cancer patients in Albuquerque called Living Through Cancer. There were also social workers from the American Cancer Society, Harold Benjamin, head of what’s now called The Cancer Support Community, which was then called The Wellness Community, and many survivors, including Hodgkin’s disease survivors who were living with long-term effects of their treatment.
“The meeting was critical, because we developed the first definition of who is a cancer survivor, and the name that was chosen for the new organization was the National Coalition for Cancer Survivorship,” she said. “They originally thought they were going to be a consortium of support groups and organizations from grassroots from around the country.”
There was no consensus on what survivorship should look like at this time.
The mainstream thinking was “Oh, you should just be grateful to be alive. It’s too bad that you got a heart attack after radiation to your chest. But you survived,” Ganz said. “It’s too bad that you’re infertile.”
Ganz, who had at the time worked in an oncology treatment and palliative care unit, was one of the few oncologists who had decided to dedicate herself to long term post-treatment effects.
“I was an outlier. I would say, probably for the first 10 to 15 years of my career, I was presenting at meetings on quality of life, and my presentation was the last thing on the agenda for any kind of scientific meeting,” Ganz said. “Because people were realizing it was important. That it was nice to have, but not really mainstream.”
After a few years, NCCS pivoted toward policy, and began to change public perception of survivorship. Ellen Stovall, who was the executive director of NCCS from 1992 until 2008, came from a Washington political background and spearheaded this change.
“Within a few years Ellen Stovall took over to develop NCCS, as she had lobbying credentials, and really moved the organization to where it was, not this grassroots organization—which was hard,” Ganz said. “The idea going forward for NCCS was to see what we needed to have done for improving the healthcare delivery system, the government research, all of the entities that could make the after effects of cancer and other post-treatment considerations better and have the concerns of survivors be addressed.”
Organizations like the American Society of Clinical Oncology began recognizing the field of survivorship.
“There was a patient advocacy committee that I was on, and they wanted us to begin to incorporate patients into this activity,” Ganz said. “ASCO wasn’t focused on survivorship, but the idea that an alliance with patients and their advocates could be very important for oncologists.”
At the same time in 1992, Ganz made a career change and began focusing on prevention. She launched the High Risk Program at UCLA and played a crucial role in the Breast Cancer Prevention Trial.
“By this time, because a lot of my own research on rehabilitation and recovery after breast cancer was well established—I was getting NIH funding for that work—I said, well, I’m going to open the prevention trial at UCLA,” she said. “It was also that time that Susan Love came to UCLA and started our breast center. It was an exciting time.”
The idea of being able to go out on a street corner and say, ‘Hey, are you high risk? Come in so we can tell you about this great prevention trial we’re doing.’ It didn’t exist,” Ganz said. “I decided that it would be much better, as Susan was starting at the breast center, to start a high risk clinic, where we could in fact see women who had family histories or risk factors for breast cancer, and make recommendations for monitoring and risk reduction. It was before we had genetic testing.”
In 2006, Ganz was named director of the UCLA-LIVESTRONG Survivorship Center of Excellence.
“While primary prevention of cancer in somebody who doesn’t have cancer is really important, it’s actually important for the survivors,” Ganz said. “When I do survivorship care, I’m doing cancer prevention and control in people who’ve already had cancer who are at high risk for a second cancer.”
In Ganz’s mind, all of her work is interconnected.
“I see everything that I do through a cancer prevention and control lens, whether it’s not getting cancer, early detection and prevention. It’s the same thing we would do in a survivor,” she said. “How can we prevent the burden of a new cancer in someone who’s had cancer already, as well as prevent it from happening?”
“Living through that time, being involved in clinical trials, I’ve been very lucky, because I’ve been able to walk the world between being a card-carrying oncologist, being a clinical trialist, treating patients, but also seeing the after effects of what we do and studying the after effects,” she said.
Ganz spoke with Alexandria Carolan, a reporter with The Cancer Letter.
