How to Get the Support You Need After a Cancer Diagnosis
by Timothy Pearman, PhD, ABPP
As of 2020, there are more than 17 million cancer survivors living in the United States, and this number is expected to nearly double by 2040. Clinical research continues to improve cancer care. And, for many people, cancer is now a chronic, manageable disease.
For people diagnosed with some of the most common 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. Additionally, for many people diagnosed with incurable disease, improvements in chronic care management have made it so that cancer survivors are able to manage and control their disease for many years after their initial diagnosis. However, despite these positive trends, cancer survivorship remains a difficult journey for many. A majority of cancer survivors experience significant fatigue. Long-term side effects like depression, anxiety, post-traumatic stress disorder, chronic pain, and neuropathy can be problematic, even years after treatment ends. So, what can you do to stay emotionally and physically healthy after a cancer diagnosis?
Make your needs known.
More than 10 years ago, in 2007, the Institute of Medicine published a seminal report that highlighted the importance of focusing on the psychosocial needs of cancer survivors. The report states that failure to address these needs is “a failure to treat patients’ cancer, plain and simple.”
However, despite the Institute’s recommendations, years passed before the National Comprehensive Cancer Network established clinical practice guidelines for distress management and survivorship. And, still today, it remains difficult for cancer survivors to access psychosocial healthcare in many rural and underserved communities. Furthermore, even if psychosocial healthcare is available in your area, your care team may not provide you these services or offer referrals if they don’t know you’re struggling.
Cancer care providers often assume that cancer survivors will let them know if they are experiencing problematic symptoms like fatigue or anxiety. But 30 years of research has shown us that this is often not the case.
Cancer survivors shy away from discussing these issues with their providers for a number of reasons. Some survivors think that bringing up troubling symptoms, side effects, or psychosocial issues will distract their doctor from the work of curing their cancer. Others may want to be treated as aggressively as possible and fear that bringing up a treatment-related issue, such as neuropathy, may lead to their chemotherapy dosage being reduced or their radiation treatments being put on hold.
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. Addressing these problems can help survivors tolerate treatment better in many cases. But these issues cannot be treated if your healthcare team doesn’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.
It doesn’t matter what type of exercise you do – just focus on increasing your daily activity. Walking, cycling, yoga, tai chi, dance classes, kickboxing, and even bowling can be effective. So, if you have a favorite activity, make sure your doctor gives it the OK, and then 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 taking charge of your healthcare. Nonprofits like the Cancer Support Community (CancerSupportCommunity.org), as well as local cancer organizations, offer support groups, services, and wellness classes free of charge to cancer survivors and their families.
Imerman Angels (ImermanAngels.org) is a support organization that offers social support to cancer survivors 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, phone, or online conversations, mentors can walk you through what to expect after a cancer diagnosis and help support you and your family members along the way.
Additionally, one of the few positive outcomes of the COVID-19 pandemic is that many cancer survivor organizations are now offering support services online, in addition to traditional in-person services. So, even if you live in a rural area or aren’t able to travel, you now have access to these services, just as long as you have a good internet connection.
Cancer can be a challenging – and scary – experience. But there are many things you can do to help yourself. Getting the support you need can help you regain a sense of control and can greatly improve your quality of life.
Dr. Timothy Pearman, a clinical health psychologist, is director of the Supportive Oncology Program at the Robert H. Lurie Comprehensive Cancer Center in Chicago, IL, as well as 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, May/June 2021.