Understanding the Emotional Aspects of the Cancer Journey

CURE, Winter 2021,

Although physical effects of cancer may be well known, people often overlook the emotional responses that patients with cancer experience.

Cynthia Hayes received a diagnosis of endometrial cancer five years ago, and the treatment was a “grueling experience.” During her treatment, not only did she feel physical side effects, but she also felt a sense of isolation and fear of her impending death, both of which she originally thought were fatigue and depression. Once someone at her gym started sharing their cancer story with her, she knew she wasn’t the only one.

“I was feeling all alone, and somebody was parroting back to me exactly what I was feeling,” Hayes said. “It gave me the sense that, wow, if I’m not the only one who feels this way, why is it that I feel like I’m the only one who feels this way?”

As she spoke with more patients with cancer, she realized that this emotional experience was more common than she originally believed, which was one of the drivers for her writing her book, “The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer,” published by River Grove Books in February 2021.

“We don’t do enough to talk about the fact that cancer is an emotional diagnosis,” Hayes said. “There are physiological reasons why it’s an emotional diagnosis, but because of the way our health care system works, the way our society works, we don’t talk about emotions. We don’t talk about emotional health.”

For this book, Hayes collaborated with several experts — including her oncologist — to discuss the emotional side of cancer, starting with the diagnosis, into treatment and recovery, and finally progression or recurrence. Before her diagnosis, Hayes was the chief marketing officer for Montefiore Medical Center in Bronx, New York, where she was responsible for marketing and communications. It was here where she connected with several doctors to not only run the idea of the book by them, but to work with them to write it.

Hayes wants readers to understand that their emotions are valid throughout this journey. “They don’t need to judge themselves harshly because they are feeling stressed, anxious and fearful of their own mortality,” she said. “Cognitive impairment, whether it is due to chemotherapy or just the overwhelming, under- lying stress of coping with cancer, that’s a real thing. It’s not that you’re making it up, shirking your responsibilities or being a lesser citizen because you are having this emotional response to cancer.”

Through discussions with neuroscientists, Hayes learned that cytokines, small proteins in the body that serve as chemical messengers, play a role in changing
a patient’s brain chemistry during their cancer journey. Cancer itself and chemotherapy both cause increases in cytokines. Some immunotherapies are actually comprised of cytokines. Cytokines are good up to a point, Hayes said, although high levels of cytokines can lead to “sickness behavior,” or the persistent desire to stay in bed and hide during treatment.

“Some of that sickness behavior is actually good because the body does have to recover from the physical onslaught of cancer, but some of that sickness behavior is what contributes to the emotional spiral that many patients find themselves in, where they are depressed and overwhelmed and (they) can’t imagine that they’re ever going to get well, and (they are) feeling anxious all the time and fearful,” Hayes said. “That’s a chemical imbalance. I really wish that I had understood that so much of what I was experiencing (during my treatment) was chemically driven.”

She also connected with patients and caregivers she met through her family and friends. This then expanded to meeting people through the doctors she spoke with and even social media to form an “ever-expanding circle,” Hayes said.

She emphasized the importance of including the caregivers’ perspective in her book due to the critical role they play in the patient’s journey.

“I wrote this book in large part for cancer patients, but also for the caregivers, because I like to say caregivers get cancer, too,” Hayes said. “Everything that the cancer patient is fearing, the loved one is fearing, as well. I think it makes it very (difficult) for the relationship between a cancer patient and spouse, parent, child, whatever, given those mutual fears are unspoken.”

Fifty percent of proceeds from the book will be donated to The Women Global Cancer Initiative (www.thewomen.org), which is focused on eliminating health care inequities in women with gynecological cancer. This organization was founded by her oncologist, Dr. Ann Marie Beddoe, and aims to bring cancer treatment to underserved parts of the world.

“I recognized that I was privileged to have excellent cancer care, to have my diagnosis come when my cancer was early and to have the successful treatment and recovery that I did because of the support network that I was able to access,” Hayes said. “Not everybody is as fortunate, and I believe that there are huge disparities in our health system. This was just one way of me trying to address that as one small cog in this large global health network.”