Editor's Note: This is the third in an occasional series of stories about cancer and its aftereffects. Also see Part 1 and Part 2.

Wendy Wolfson
RedwoodAge.com

In the past few decades, the number of people who survive cancer has quadrupled. An estimated 12 million cancer survivors now live in the US, compared to 3 million in the 1970s, and most are over 65.

But as more people live longer, they find that surviving brings a new set of challenges.  The aftereffects from cancer and the treatment itself can linger or crop up years later. Some become permanent and chronic problems. Cancer can complicate other health conditions, and it can return in another form. 

Survivors also have to deal with the psychological, physical, sexual, insurance and work issues that are associated with serious illness. As advocates point out, cancer affects not just the person who has it but his or her family as well for years to come. 

No wonder that patient advocates have long argued that care should extend beyond the treatment for the disease itself. 

In 2002 the CDC, funded by the Lance Armstrong Foundation, published a report on the public health aspects of survivorship care. But it took the 2006 Institute of Medicine Report "Lost in Transition" to bring the issue to the attention of the medical community, according to P.J. Haylock, a registered nurse. 

"The problem is the largest amount of evidence has been collected on white, middle-aged and middle-class women with breast cancer," said Haylock. "There is a huge unexplored population. And it is a moving target. Treatment modalities today are going to be different from a year from now." 

Research studies are necessary to build the evidence-based standards that are required by insurance companies for reimbursement for treatments and screening. Survivorship programs are hammering together consensus-based standards, but it is a slow process.

Treatment Centers
The Lance Armstrong Foundation is funding 8 survivorship centers. But according to Linda Jacobs, a registered nurse and director of the Living Well After Cancer Program at the University of Pennsylvania Abramson Cancer Center, only 5 percent of cancer patients in the US are treated at large academic medical centers. 

The current centers are:  the University of Pennsylvania Abramson Cancer Center, Memorial Sloan Kettering Cancer Center in New York, Dana-Farber Cancer Institute, Fred Hutchinson Cancer Research Institute, Ohio State University Comprehensive Cancer Institute, UCLA Jonsson Cancer Center, University of Colorado Cancer Center, and University of North Carolina Lineberger Comprehensive Cancer Center.

Knowing your medical history is essential for good follow-up care. A critical IOM recommendation was the creation of a treatment summary and survivorship care plan for every cancer patient when treatment concludes. Electronic medical records would make collecting that information easy, but few institutions have them. And the time spent assembling the information is not reimbursable, so that tends to fall between the cracks.

"There is absolutely no systematic follow-up for long-term survivors." said Susan Leigh, a registered nurse, cancer survivor, survivorship advocate and founding member of the National Coalition for Cancer Survivorship (NCCS).  Survivor groups encourage their patients to get that information from their doctors and treatment centers when they conclude therapy.

"It could be lifesaving down the road," said Leigh. NCCS offers resources to cancer survivors, including its Cancer Survival Toolbox  and Journey Forward, a downloadable treatment summary template.

Educational sites like the Abramson Center's Oncolink.org are sources of information for both medical professionals and cancer survivors. As many community hospitals and primary care physicians are unfamiliar with the particular post treatment issues that can affect cancer survivors, and many cancer therapies are so new that their long-term effects aren't known, OncoLink provides a source of constantly updated information. The site is written solely by doctors and nurses, but is accessible to both medical professionals and patients.. OncoLink also has a downloadable treatment summary template .  

A crucial function of survivorship counseling is teaching people how to live beyond cancer.

Certain post-cancer complications, such as lymphodema after breast cancer or vaginal strictures after pelvic radiation can be lessened or avoided with preventive care. Regular exercise and a healthy diet, can make a huge difference in overall health.

"We need to get survivors exercising more and eating better by focusing on wellness and health after cancer," said Leigh. "There are lots of ways we can help people feel that they can regain some control in their life."