How to Get the Support You Need during and after Cancer Treatment
by Timothy Pearman, PhD, ABPP
There are more than 15.5 million cancer survivors living in the United States today, and this number is expected to nearly double by 2040. Cancer treatments continue to improve and be refined. For people diagnosed with some of the most commonly diagnosed cancers, like prostate cancer and breast cancer, more than 90 percent can expect to live five years or longer after their diagnosis, with high cure rates. Even for those who may not be cured, better disease management can extend life for many years.
But, despite these positive trends, cancer survivorship remains a difficult journey for many. A majority of cancer survivors experience significant fatigue. Issues like depression, anxiety, post-traumatic stress disorder, and chronic pain can be problematic, even years after treatment ends. So, what can a survivor do?
Make your needs known.
In 2007, The Institute of Medicine released a report (Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs) that highlighted the importance of focusing on the psychosocial needs of cancer survivors. The report stated that failure to address these needs is “a failure to treat patients’ cancer, plain and simple.” However, despite these recommendations, more than five years went by before the National Comprehensive Cancer Network established clinical practice guidelines for distress management and survivorship. At long last, these guidelines now mandate that people with cancer be assessed and treated for emotional distress, and that survivorship care plans to guide and manage survivors’ psychosocial and medical needs during and after treatment be established for every person diagnosed with cancer.
Cancer care providers often assume that survivors will let them know if they are having problematic symptoms. But over 20 years of research has shown that this is often not the case. Survivors may shy away from discussing these issues with their doctors for a number of reasons. For example, they may think that bringing up troubling symptoms, side effects, or psychosocial issues will distract their doctor from the work of curing their cancer. Or, they want to be treated as aggressively as possible and may worry that if they bring up certain treatment-related issues the dosage of their chemotherapy will be reduced or they will be given a break from treatment.
Having a peer support network can help reduce depression and anxiety and may encourage you to become more active in making treatment decisions.
However, it is vital for you to let your healthcare providers know if you’re experiencing side effects like fatigue, depression, anxiety, insomnia, weight changes, neuropathy, or cognitive changes (often referred to as “chemo brain”). Even though these side effects are common in cancer survivors, they are largely treatable problems. And addressing these problems can actually help survivors tolerate treatment better in many cases. But these issues can’t be treated if your healthcare providers don’t know about them.
If there were a “one size fits all” prescription for managing cancer-related fatigue, pain, depression, anxiety, weight changes, and insomnia, it would be exercise. And it doesn’t even matter what type of exercise you engage in; just exercise. So, if you have a favorite activity, make sure your doctor says you can participate, and hit it! Don’t wait; start today.
Seek out support.
Another way to make sure your supportive care needs are being met is to join a support group. Having a peer support network can help reduce depression and anxiety and may encourage you to become more active in making treatment decisions, managing side effects, and talking to your doctors and nurses. Organizations such as the Cancer Support Community (CancerSupportCommunity.org) and local Gilda’s Clubs offer support groups and classes on nutrition, coping, and wellness free of charge to cancer survivors and family members.
Imerman Angels (ImermanAngels.org) is another organization that provides social support at no charge. This group matches newly diagnosed individuals with a “mentor angel,” a person who has fought the same disease, experienced the same treatment, and has flourished despite these challenges. Through in-person, telephone, or email conversations, mentors can walk you through what to expect after a cancer diagnosis and help support you along the way.
Cancer can be a challenging and scary experience. But there are many things you can do to help yourself. Getting the support you need will help you regain a sense of control and can significantly improve your quality of life.
Dr. Timothy Pearman is a clinical health psychologist and director of the Supportive Oncology Program at the Robert H. Lurie Comprehensive Cancer Center in Chicago, IL. He is also a professor of Medical Social Sciences and Psychiatry & Behavioral Sciences at the Northwestern University Feinberg School of Medicine in Chicago.
This article was published in Coping® with Cancer magazine, January/February 2018.