When people finish treatment for cancer, they want to bounce back to their former vital selves as quickly as possible. But a new Northwestern Medicine study -- one of the largest survivor studies ever conducted – shows many survivors still suffer moderate to severe problems with pain, fatigue, sleep, memory and concentration three to five years after treatment has ended.

“We were surprised to see how prevalent these symptoms still are,” said study co-investigator Lynne Wagner, an associate professor of medical social sciences at Northwestern University Feinberg School of Medicine and the Robert R. Lurie Comprehensive Cancer Center. “This is one of the first looks at what’s really happening for survivors in terms of symptoms and treatment among community-based treatment settings across the U.S.”

The persistent pain in survivors who are cancer-free and no longer receiving any treatment is particularly puzzling, Wagner noted, because good treatment exists. “It seems we haven’t come a long way in managing pain despite a lot of medical advances, ” she said. “This is eye opening. It tells us we need to be better in clinical practice about managing our survivors’ pain.”

Cancer survivors seem to slip through the cracks in healthcare in terms of getting treatment for their pain and other symptoms. “We don’t have a great system to provide care to cancer survivors,” Wagner said. “Cancer survivors are left trying to put the pieces together to find optimal care. They ideally need to see someone who is knowledgeable about the long-term affects of treatment.” She pointed to the example of the STAR (Survivors Taking Action & Responsibility) Survivorship Program at Lurie Cancer Center, a comprehensive long-term follow-up program for survivors of pediatric cancer.

The study included a sample of 248 survivors of breast, colorectal, lung and prostate cancer. The survivors were primarily female and white, and most were more than five years post-diagnosis. They also had been treated in community settings -- where 80 percent of people with cancer are treated in the United States -- as opposed to academic medical centers. This group best represents the typical experience of cancer survivors around the country, Wagner said.

The most common symptoms reported by survivors were fatigue (16 percent), disturbed sleep (15 percent), cognitive difficulties (13 percent) and pain (13 percent.)  Survivors need education programs for transitioning from treatment to life as a cancer survivor, and this education should include skills for managing these difficult and chronic symptoms, Wagner said. Medical providers also need to be educated about survivors’ lingering symptoms.

“It is acceptable for someone actively going through cancer treatment to have pain medications, but when they transition to being survivors, that acceptance goes away,” Wagner said. “If they ask for pain medication again, doctors may worry that they are getting addicted.“

The study also pointed out the need to develop better ways to address sleep problems, fatigue and lasting difficulties with memory and concentration. Non-drug interventions for improving sleep are effective, Wagner said, and researchers need to tailor these for cancer survivors. Exercise is the most effective weapon against cancer-related fatigue, but it’s challenging to adhere to an exercise regime when you don’t feel well. “We need to see how we can be more effective in promoting physical activity among survivors,” Wagner said.

Researchers also documented any treatment interventions for study participants’ symptoms and then repeated an assessment of the symptoms four weeks later.“We generally found the same severity of these symptoms one month later, suggesting they tend to be chronic,” Wagner said.  Participants concluded more research was needed on the prevalence of these symptoms.

By Marla Paul, Northwestern Science Writer

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Comments

Hi, I'm excited to see exercise mentioned in this article! Usually in articles and studies like the one mentioned here it's all about drugs and surgery; never about nutrition and exercise. If you look at some of the european clinics dealing with cancer you can find better survival rates among them. And one thing they deal with and address better is nutrition and lifestyle for cancer survivors. Radiation and drug therapies for cancer almost completely destroy a persons immune system. One of the best ways to enhance and bring your immune system back to life is with nutrition! Keep up the good work.

Thanks this is a great post. I think most americans have an issue with fatigue because of diet. Look at the rise in energy drinks. I find that interesting that we lack energy because of our diet then to solve that problem we make our diet even worse by drinking these drinks. -James

cancer is really one of the greatest enemy of human beings. And it is really hard to fight against cancer, it is always too late to conquer cancer when you attacked by it. So it is wise for people to pay more attention to our daily life style,drink less,smoke less and do more exercise,leading a healthy and happy life,that is what we should do.

Thank you for your informative article, Marla. I've been working with my mother through many of the issues you talk about. I think the hardest thing she struggles with is fatigue. Not moving enough, she gains a little weight and looses muscle causing even more pain. She's not big on taking medications and I've often wondered if not taking meds is self-defeating. All around it difficult. Best regards.

Very informative article and very interesting. Please keep me updated on these posts. I finding this interesting. Thanks :-)

The study also pointed out the need to develop better ways to address sleep problems, fatigue and lasting difficulties with memory and concentration. Very nice article and I really love it. Thanks :-)

Very interesting article. My mother is depressed because she hasn't been able to "bounce back". I won't tell that there is a possibility that she may never!

My cancer scare changed my life. I'm grateful for every new, healthy day I have. It has helped me prioritize my life.

It's really heartbreaking to hear that - I can't even begin to imagine the pain that cancer sufferers go through during treatment. It's great that we have such great medical advancements today allowing us to have effective solutions to treat them - but I feel for cancer survivors having to suffer from all the debilitating side effects from such harsh treatment.

Have you ever thought about reading Dr John Sarno's Mindbody Prescription book he talks about pain, fatigue and insomnia and all having the same root cause. In extreme cases he says people can have cancer and the lesser symptoms are fatigue. It may help as there is a very simple cure for it in awareness. Read the book and he explains it very well or his video is very good too.

Interesting post. I wonder if the lingering pain has anything to do with the type of cancer treatment these survivors received. Could their pain be directly linked to their having received chemotherapy or radiotherapy? Both of these are painful and no doubt leave long-lasting effects. EDITOR'S NOTE: Different drugs have different side effect profiles....so the type of drug or radiotherapy does play a role. Also one's personal health status may impact how bad side effects are.

Thank you for your informative article, Marla. cancer is really one of the greatest enemy of human beings.

This is a very interesting article for me. My daughter in law is a cancer survivor and had lymph nodes removed from her breast and underarm area. She is no longer receiving treatment, yet still has pain and does not have full motion of her arm due to that pain. I will refer her to this article. Hopefully people like her that 'drop through the cracks of healthcare' can receive the treatment they need.

I’ve been working with my mother through many of the issues you talk about. I think the hardest thing she struggles with is fatigue. Not moving enough, she gains a little weight and looses muscle causing even more pain. She’s not big on taking medications and I’ve often wondered if not taking meds is self-defeating. All around it difficult.

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