Opinion: Bay Area cancer survivors aren’t getting the help they need

Cancer survivors in the Bay Area are awash in unanswered questions.

After losing their hair to cancer treatment, where can they find an affordable wig? Who can they talk with about cancer-related s****l problems? How can they get help with staggering medical bills? Where can they find a support group for their particular type of cancer?

As most survivors will tell you, cancer is not a one-off. Like a Category 5 Caribbean hurricane, it can roar through the waters of a once-tranquil life, throwing a person off course for months,  sometimes  years. Even after completing treatment, survivors can find themselves facing ongoing physical, psychological, social and financial problems. These problems can be devastating – and may even reduce long-term survival.

In 2006, the Institute of Medicine determined that most cancer survivors in this country were not getting the support they needed. The agency recommended that all U.S. hospitals give cancer patients who have completed their initial treatments a plan for survival. This plan would spell out how and where survivors can find help dealing with the long-term impacts of both their disease and its treatments. It should be in writing, the agency said, and should be clearly explained to each patient. In effect, the plan would serve as a GPS device to help survivors navigate rough and unfamiliar post-cancer seas.

What has happened in the 13 years since the Institute’s recommendation? The vast majority of cancer survivors are still adrift. In a survey of Silicon Valley survivors, about half reported continuing difficulties with physical side effects, emotional issues, finances and/or insurance. More than 70% said their hospitals or other health-care providers had never given them a plan that would help them deal with post-treatment problems, according to Rob Tufel, of Oakland, who conducted the study.

“It’s a race to the finish line to win, but you realize that you didn’t win and there are a whole new set of problems hiding in surviving,” wrote one survey participant.

The survey was conducted by Cancer CAREpoint, a San Jose-based non-profit that offers various free non-medical support services to people affected by cancer. Gay Crawford, a Cancer CAREpoint founder, believes that dealing with cancer’s aftermath is vital for survivors’ health and wellbeing. “Studies show that people who receive this support have less fear, stress and anxiety, which may improve their chance of long-term survival,” said Crawford.

Approximately 3 million people – 1% of the U.S. population – live in Silicon Valley. Of these, about 10,000 are diagnosed with cancer each year. This number is growing and, with improving treatments and an aging population, the percentage of survivors is also growing.

In response to its findings, Cancer CAREpoint has taken the lead in forming a group of representatives from across medical and cultural divides, including most area hospitals and leaders in the cancer field. The group, the Cancer Survivorship Coalition of Silicon Valley, has as its goal “to advocate for cancer patients’ unique needs, in order to ensure optimal long-term health.”

Coalition members and Santa Clara County Supervisor Cindy Chavez  says survivor support should be included in public health programs. “Survivors and their family members endure so much,” she said. “They deserve all the help they can get to keep moving to have full lives.”

As a nurse working in oncology for almost 20 years, I have seen too many people go from receiving intense treatment as patients to virtually no support as survivors. I believe some would have had better outcomes with a continuum of support. Now, as head of this new coalition, I look forward to the day when survivorship is seen as a community effort.  No one should have to navigate it alone.

Jen Landes, a registered nurse, is former clinical operations director for the Stanford Cancer Center South Bay. She is a member of the Board of Directors of Cancer CAREpoint, where she heads the Cancer Survivorship Coalition of Silicon Valley.

 

 

Source: mercurynews
Opinion: Bay Area cancer survivors aren’t getting the help they need