The 2020 Cancer Experience Report Findings
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
SEPTEMBER 29, 2020
The Cancer Support Community released its 2020 Cancer Experience Registry Report which was compiled from responses of nearly 15,000 people with cancer. This is a deep and wide view that likely will confirm your experience and feelings and perhaps teach you something new. The intent was to explore the physical, emotional, social, practical, and financial aspects of having cancer for both patients and caregivers. The only missing domains that I can think of would be spiritual and inquiring about medical care/interactions with caregivers. The report also includes results from 12 Specialty Registries that delve deeper into specific cancers.
...more than half of the cancer patients surveyed were found to be at risk of major anxiety, and 4 of 10 were at risk of experiencing clinical depression.
Depression and Anxiety
As I read the full report, I was both reassured and disappointed that there were no surprises. For example, more than half of the cancer patients surveyed were found to be at risk of major anxiety, and 4 of 10 were at risk of experiencing clinical depression. Those feelings are inevitably part of having cancer and cancer treatment, but it is discouraging that so many people apparently don't have the opportunity to fully express those feelings or find appropriate help. Whether many people don't disclose these worries to their doctors or whether they aren't offered appropriate support is unclear. At BIDMC and most other cancer centers, oncology social workers are available and skilled to help manage these worries.
Since there are never absolute promises in Cancer World, almost everyone worries about recurrence, cancer progression, or dealing with advanced disease. Whatever we are told about our particular prognosis may be helpful, but we all appreciate that everyone is an N of one, and we need to find a way to live with uncertainty. Depression is a natural companion of that anxiety. Thinking about the people we love, our children who need us, everything we might miss is very distressing. There is the short-term loss during treatment when life is upended, and there is the ongoing concern about the future.
Nutrition and Exercise
Both patients and their families described moderate to very serious concerns about details of daily living. Nutrition and exercise were especially prominent worries both during and after treatment. This is a reminder that there are no foods with magical properties or the ability to prevent cancer or cancer progression. We all know the basics of a healthy diet and the strong advice to stay active. These goals can be challenging during treatment and maybe afterwards.
It can especially be tricky for families to avoid struggles with the patient about eating. For many of us, food=love, and we try hard to provide good snacks and meals for our families. It is quite disheartening to have someone reject, over and over, the offered food. And, for the patient, it is just as hard to try to eat when nauseated or otherwise unwell.
The best advice is always to offer multiple small meals and not to comment if they go untouched. If this is an issue for you or someone you love, consider speaking with a nutritionist for ideas and support.
Many people worry about finances and the high cost of cancer care. Even those with excellent medical insurance likely have some uncovered costs, high co-pays or deductibles. There are the associated expenses like parking at the hospital, travel costs, hiring additional household help or childcare. Many people experience a reduction in income while going through cancer treatment or supporting someone in the family. It was especially disheartening for me to read that most patients never discussed costs with their doctors although there has been a real push to advise oncologists to talk about the cost of medications with their patients.
Sex and Intimacy
Most people also reported that their doctors did not ask about sexual concerns or problems with intimacy. Many people also don't feel fully informed about their treatment options and don't know how to access more information about the possibilities. This certainly includes consideration of clinical trials.
Finally, this report confirms that many family caregivers feel unprepared and unsupported. Some of the respondents said that they give more than 100 hours/week of care and that their own health is suffering. Even in less difficult circumstances, families badly need information, resources, emotional support, and understanding.
It often feels that the world's attention is directed only at the patient, and many family members have talked with me about their sense of being overlooked. Since we know that good caregiving at home often results in better outcomes for patients, we must find ways to help loving family members do their best while retaining some quality time for themselves.
About the Cancer Support Community
The Cancer Support Community provides a wide range of virtual support for cancer patients and their families. Their resources include ways to chat with an expert, connect with others who have a similar cancer to yours, or build a personal online support community. During non-pandemic times, they have in-person groups and resources.