S. Gail Eckhardt, MD, is the chair for the Department of Oncology and director of the LIVESTRONG Cancer Institutes at The University of Texas (UT) at Austin Dell Medical School. She is a gastrointestinal oncologist and is an internationally renowned researcher specializing in phase I clinical trials and translational research. Barbara Jones, PhD, MSW, is the associate director of Social Science and Community Based Research at the UT Austin Dell Medical School LIVESTRONG Cancer Institutes. She serves as associate dean for health affairs at the UT Austin Steve Hicks School of Social Work. Rebekkah Schear, MIA, is the director for mission delivery for the LIVESTRONG Foundation, where she oversees strategy and implementation of patient-centered care programs. Nicholas Smith-Stanley is the associate director for finance and administration at the LIVESTRONG Cancer Institutes and oversees strategic planning and operations.
When most people hear that they have cancer, time stops for them and their caregivers. The doctor is explaining the next steps, but you and your family may hear nothing except the words “You have cancer.” Questions might be racing through your head, like “How am I going to afford this?”, “Am I going to lose my hair?”, “What do I tell my family?”, and “Am I going to die?”
A lot of care and effort is put into creating a plan to treat your cancer, but the disease affects all aspects of life. What other things do you need to be aware of if you are diagnosed with cancer?
1. Direct and indirect costs
Cancer treatment can be expensive, and there are also indirect costs associated with living with cancer. You and your caregivers may have to miss work during treatment or because of side effects. Other expenses that can arise include paying for transportation to and from the treatment center, lodging for overnight stays, medical equipment and supplies, and child care. For some, these expenses can be overwhelming.
The first place to start when it comes to the costs of cancer treatment is to talk with your doctor. Many cancer centers have systems in place to let patients know how much treatment may cost. This can help inform patients and their cancer care team as they develop the treatment plan. There are resources to help people with cancer and caregivers navigate this complex process. Ask to meet with a financial navigator at your cancer clinic, so you can look for financial support, like grants for basic needs, discounted airline tickets for treatment travel, and co-pay programs to cover medications.
2. Impact on caregivers, family, and friends
A cancer diagnosis will also impact a patient’s family and caregivers. Spouses and partners, sisters and brothers, children and grandchildren, family and friends are often with a patient for every step of their treatment. They are there when a loved one finds out they have cancer. They are at the infusion center when the patient receives chemotherapy or in the waiting room during surgery or radiation therapy. They share the ups and downs of a life with cancer. A caregiver’s support often helps patients through their treatment. However, the treatment plan rarely addresses how cancer affects loved ones and caregivers.
To make sure that your caregivers are also supported, ask your health care team to discuss:
Sources of stress, worries, and concerns for the family
Strategies to help you communicate with your family, including children
Specific needs that your caregivers have
How your family can take care of themselves
Available online resources
Local support groups and resources
Cancer can change how you relate to family members and friends. Understanding this may help you take steps to maintain healthy, mutually supportive relationships during this challenging time. Good communication will be very important in supporting relationships.
3. Managing emotions
Cancer is different for everyone. There is no one way that people experience it. Therefore, it is difficult to fully understand the entire physical, emotional, and social impact that a cancer diagnosis will have on someone. Feelings of anxiety, sadness, anger, and guilt are just some of the emotions that may emerge from a cancer diagnosis.
There are resources to help you cope with the feelings that come with a cancer diagnosis. Counseling and support groups can be helpful for patients and caregivers. Seek support and help when you need it. You can start by asking a member of your health care team who provides psychosocial support, such as a counselor.
What is being done to better address these issues?
There is a growing awareness in the cancer care delivery system of the essential need for patient-centered care. This means that patients, their caregivers, and their families are at the center of the cancer experience. Through this, all those affected by a cancer diagnosis can receive treatment and support.
A first step toward patient-centered care requires building a multidisciplinary team that can address the needs that are most important to you and your loved ones. Members of the multidisciplinary team include social workers, spiritual advisors, financial counselors, nutritionists, palliative and pain specialists, other mental health providers, and occupational or physical therapists, among others. These different professionals can work together to help you focus on your treatment and reduce the cancer’s impact on you and your loved ones’ daily lives. If you need the expertise of a specific professional on your cancer care team, ask if your treatment center has someone on staff or if you can have a referral.
Another step is to redefine what it means to be a “cancer survivor.” Many still feel that a “cancer survivor” is only someone who has completed therapy and whose cancer is in remission. However, sometimes new treatments are used that don’t cure the cancer but can control the disease, so someone can live with cancer for many years. Are these people survivors or patients? We believe that a “cancer survivor” is anyone who has received a cancer diagnosis, regardless of where they are in the cancer experience. We need to change our approach to focus on all people living with cancer, ensuring that survivors and their loved ones can get access to all the support they need.