Now What?

Our experts talk about the transition from patient to survivor

Survivorship experts Sheila Crowley (right) and Marcia Leonard talk about getting the right care for you after cancer treatment ends.

When you're in treatment, you long for the day when your treatment is finished. But for many, that day is less triumphant than they envision. Yes, you may be cancer free, but the worries are still there. And then there are the side effects: the fatigue, difficulty sleeping, maybe some changes in body image. They may linger, too.

Put simply, life is just different than it was before.

That's why the University of Michigan Rogel Cancer Center has established a new program to help ease the transition from regular treatment to less frequent follow-up care. Experts Sheila Crowley, Ph.D., R.N., and Marcia Leonard, R.N., P.N.P., answer your questions.

Q.: The term "cancer survivor" means different things to different people. How do you define it?

Crowley:
There are many different definitions of the term. For the National Coalition of Cancer Survivors, everyone who has been diagnosed with cancer is considered a survivor from that day forward. People who are impacted by cancer -- family, friends and caregivers -- are also considered survivors. At the University of Michigan Rogel Cancer Center, our aim is to ease the transition that follows after active treatment ends. We've found that patients often feel a bit unsettled after their cancer treatment and not sure how best to move forward after treatment is completed. Our goal is to provide them with an individualized survivorship care plan, which provides information on how to manage their care in the future, as well as strategies to optimize their overall health and wellness after cancer treatment.

Q: What types of issues do patients face at this stage in their care?

Crowley:
It depends on what type of cancer and what types of treatment a patient has received. But almost all of our patients are concerned about recurrence. What can they do to prevent the cancer from returning? Some may be coping with side effects of treatment, such as fatigue, sleep disturbances, peripheral neuropathies, changes in body image and problems with sexual health-to name a few. Others are challenged by feelings of anxiety, depression or sadness. And still others want to be educated about what they can do to limit or manage long-term treatment effects.

Leonard:
The detrimental effects of treatment are of particular concern in childhood cancer survivors. Because the organs of children are actively growing during cancer treatment, they are at higher risk for long term complications. Depending on the treatment children receive, normal growth may be affected. Puberty may be delayed, and the ability to have children of their own may be problematic. Children who receive treatment that affects the brain are at risk for residual learning disabilities. The risk of secondary cancers -- although small -- is real.

Q: What does the Rogel Cancer Center offer patients who are facing this transition in care?

Crowley:
Survivorship care is a new concept for adults. We are piloting program with breast cancer and prostate cancer patients to determine how best to address their concerns before expanding the program to other cancer populations. The cancer center's goal is to expand programs to benefit all cancer patients, but in the meantime, we have less formal means of connecting patients with helpful resources. We've found that a good starting point is an educational booklet from the National Cancer Institute called Facing Forward.

Q: What should people entering this phase of treatment do to ensure they get the type of care they need?

Crowley:
The first thing to do is to talk with your health-care team about a summary of your treatment. Discuss which long-term effects you should be concerned about as well as their recommendations for routine follow-up care and screening tests. Take this information to your primary-care doctor and have a discussion about it. If you are experiencing anxiety, sadness or depression, consider making an appointment with the cancer center's PsychOncology Program. Our Patient & Family Support Services are available during and after treatment. Also consider seeking out help from a peer counselor or using one of the many services offered by our Complementary Therapies Program.

Leonard:
The goal is to educate yourself and your family so you can be fully prepared if problems do arise in the future. While it's true that cancer treatment can have long-term effects, it's equally true that getting help for these effects earlier rather than later can have long-lasting impact on quality of life as well.

Continue reading the spring, 2009 issue of Thrive