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Survivorship for Dummies

More people are getting cancer and more are surviving it. The costs of survivorship -- financial, physical, psychological, social, emotional -- affect not only survivors and their families, but our country and our communities.
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Cancer survivors are my heroes; I'm a survivor myself. So I hope the title doesn't offend anyone -- maybe the most useful attribute you can have regarding cancer is a sense of humor.

I felt the title applies to this piece, plus I wanted to get your attention -- whether you had cancer or not. Because an awful lot of people and their families are -- or will be -- intimately involved with survivorship.

"Survivorship focuses on the health and life of a person with cancer post treatment until the end of life. It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience."

I learned a lot more about it when I recently attended the National Cancer Survivorship Research Conference, a joint project of the National Cancer Institute, the American Cancer Society, Livestrong, and The Centers for Disease Control. I was surrounded by hundreds of experts -- although my own scientific education ended with high school biology and I graduated from an Ivy League school without ever taking chemistry.

So I don't have the knowledge (or space) to do justice to all the information pumped into me. And that's where the dummies part comes in. I'm sharing some highlights in broad strokes and in language that everyone and anyone can understand.

Survivorship Is Booming

You don't need to understand statistics (I don't either) to see why survivorship is an important issue for everyone. More people are getting cancer and more are surviving it. Almost 70 percent of people diagnosed with cancer today will be alive in five years. In the U.S. there are almost 14 million survivors, and this is estimated to reach 18 million within 10 years.

The costs of survivorship -- financial, physical, psychological, social, emotional -- affect not only survivors and their families, but our country and our communities.

Part of the Journey

Just 17 years ago when I had cancer, survivorship as a concept barely existed. After treatment, I was sent home and pretty much left to figure out how to survive on my own.

Though the medical system normally moves at a glacial pace, a seismic shift has already happened. Today survivorship is considered part of the cancer journey. Its importance is recognized by the leading cancer institutions -- including those who sponsored this conference -- plus support groups, websites, and foundations, which are resources to help survivors navigate their lives after treatment.

Equally important, survivorship is booming as a field of study.

Research scientists, psychologists, and policy makers are all over it. And as demonstrated by the conference, they are collaborating with each other -- taking the science and translating it to care.

Women are traditionally caregivers, so I wasn't surprised that women were the majority of attendees at the conference. I was surprised that this wasn't only in the audience. The majority of the presenters were also women -- research scientists, advocates, policy makers -- indicating women are leaders in this emerging field.

We All Have Issues

Lance Armstrong famously said that cancer was the best thing to ever happen to him. I don't think you'd find many survivors who would agree. The challenges and concerns stemming from cancer can persist long after treatment, sometimes for the rest of your life.

Just a few that were addressed at the conference: fatigue, finances, fear of recurrence, immune function, intimacy, relationships, cognitive issues and chemo brain (which is now recognized as real).

For managing these type of concerns, every patient after treatment should get a survivorship plan from their doctors, which is a history of their cancer and a roadmap for the future, including how to address psychological, social and emotional needs.

Obesity and Exercise

I thought I knew what I would hear here. It's well-known that obesity is linked to several different cancers. And we all know that exercise is touted as a benefit to a multitude of problems. Still, there were a few surprises.

As someone who hates to exercise, I was all set to give up my gym membership when I heard a prominent researcher report his surprising findings -- in some studies, exercise was not necessarily beneficial for survivors and obesity "might not have the same effect on all survivors."

But those were isolated examples. Otherwise, the recommendations are very familiar: Survivors do better with exercise, healthy diets, and enough sleep.

Age Matters

Age is the single most important risk factor for developing cancer. People are living longer lives; the baby boom generation is growing older. Put that all together and it adds up to a huge impact on survivorship -- now and in the future.

Right now 60 percent of survivors are over age 65 -- the proportion is headed upward -- and so are the related problems. Expanding the problem is the fact that this group, with the most numbers and the most needs, is the least studied.

One factor compounding the problem is that older people have more health problems in general -- which requires more medical care. Older patients with multiple chronic illnesses are very expensive to the health care system -- health experts call them "frequent flyers."

After cancer treatment ends, many survivors end up in the care of their primary doctors, who generally are not as well-versed in issues of survivorship.

One potential solution being studied is the use of "transition coaches" who can help give people tools to manage their own survivorship -- and everyone agrees on the importance of survivors being informed and involved.

Purpose, Passion, Progress

Though survivorship is challenging, the conference felt positive -- it was suffused with a sense of purpose, passion and progress. It was impossible to be there and not to be inspired. (It's also impossible to include everything in one post -- in the near future I'll follow up with a post on stress and resilience.)

For information and tips on handling survivorship from the American Cancer Society, click here.

For more information on survivorship resources, click here for the National Cancer Survivorship Resource Center.

Darryle Pollack writes a blog partly based on her experiences of survivorship, called I never signed up for this...

For more by Darryle Pollack, click here.

For more on cancer, click here.