Three years ago, Hil Moss says she was lounging around, casually watching television and relaxing when she touched her chest and felt a lump. She was 28, and with no family history, she says her doctor reassured her that she had nothing to worry about. But after a few more appointments, they confirmed a diagnosis of breast cancer, likely caused by an ATM gene mutation they found.
After three years and a 14-month treatment plan — which included three months of chemotherapy, a double mastectomy, and a tissue-based reconstruction, later followed by hormone therapy — Moss, a student in the Yale School of Public Health in New Haven, Connecticut, and an advocate for cancer care, now considers herself a breast cancer survivor.
The American Society of Clinical Oncology (ASCO) defines survivorship as, “living with, through, and beyond cancer.” But some patients who get to the “beyond cancer” stage say they were unprepared for the toll this experience would take on their mental health.
When she was first diagnosed, Moss says she anticipated that the most difficult part of her experience would be receiving the treatment, but a fellow survivor warned her that it would actually be the months following her completion of it that would be the hardest. Sure enough, Moss says she found the first six months of her recovery period more mentally challenging than anything she had physically gone through, including the amputation of both her breasts.
“That just seems impossible to believe,” Moss says. “You're in chemo, you feel horrible, how could it possibly be worse? But it kind of is. When you're actively in treatment, you at least have this sense of what your day-to-day is, and sometimes that can feel like a safety blanket.”
“When you are removed from that, you are forced to essentially reckon with what's happened. You have to come to terms with your own mortality,” Moss says.
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Breast Cancer Survival Rates Are Increasing
Marleen Meyers, MD, a medical oncologist and the founding director of the Survivorship Program at Perlmutter Cancer Center at NYU Langone Health in New York City, says that breast cancer is a “hopeful cancer,” because more and more patients diagnosed with breast cancer are surviving, but that living through this experience “comes with a price.”
“I've been an oncologist for a long time, and early on, we were just happy that people survived,” Dr. Meyers says. “We didn't really look at what their quality of life after survivorship was. I always like to say that the cancer treatment may be over, but the cancer experience is far from over.”
Experts say that the vast majority of patients struggle with mental health after receiving cancer treatment.
“There’s anxiety about what the next steps are, how they’re going to feel, how long it’s going to take for them to get better,” Meyers says. “The reality is, while you can give somebody an estimate, it’s impossible to predict.”
Fear of Recurrence and the Impact on Mental Health
Hil Moss, 31, has become an advocate in the breast cancer community and is passionate about creating survivorship resources.
People who have been diagnosed with breast cancer say that, for many survivors, the anxiety they experience stems from the fear that their cancer might come back. "Scanxiety" is described in a review published in May 2021 in the journal Cancer Medicine as the anxiety many patients experience when going through imaging scans following cancer treatment.
Moss says that when she experiences any type of pain in her body, she wonders if her cancer might have returned. She says that when she enters the Dana-Farber Cancer Institute for a checkup with her doctor and smells the building in which she previously underwent 24 infusions, she feels instantly nauseated.
“If you underwent treatment in a particular location, there is a Pavlovian response when you walk in that building,” Moss says. “Feeling a random pain and wondering if it's a recurrence, or having blood drawn and flashing back to sitting in that chemo chair — some of those things just won't go away.”
Depression and Other Lasting Effects of Cancer Treatment
Mental health and mood can also be affected by the drugs used in many treatments, according to experts and breast cancer patients. In a study published in January 2021 in PLOS Medicine, survivors of breast cancer were more likely to experience a variety of psychological issues, including anxiety and depression, than women who have not been diagnosed with cancer.
Meyers says hormone therapy is one method of treatment whose impact on patients’ psychological health is often overlooked, and it can lead patients to experience depression.
Elizabeth Ayers-Cluff, the founder of the Impact One Breast Cancer Foundation, was first diagnosed with breast cancer when she was 36 years old. She says she struggled with depression for over a year after she completed her cancer treatment, in part due to the treatment itself.
“I truly believe that the one thing that is not discussed enough is the commonality of chemical treatment that’s given to you, and what it does to the mental stability of your mind,” Ayers-Cluff says. “I saw it gradually going, it was treatment after treatment. By the end of your journey, the depression was set into me for months.”
When Ayers-Cluff was rediagnosed with metastatic breast cancer in 2018, she says she decided she wasn’t going to let her depression build back up to where it had been after her first diagnosis almost a decade before.
“I just told myself I was going to do all I could for my mental health this time,” Ayers-Cluff says.
Survivorship Tips and Resources
Experts and breast cancer patients say that most people manage their anxiety through exercise, artwork, mindfulness and meditation practice, and therapy, among other outlets.
“The number one piece of advice that I give to folks navigating a cancer diagnosis is, if at all possible, and if you have access to this, line up a therapist as soon as you can,” Moss says.
ASCO has a survivorship page with links to different resources for patients navigating life after cancer treatment.
Though mental health is certainly affected by cancer treatment, Moss says that the lasting impacts are present in every piece of a survivor’s life.
“What does it mean to continue working or to return to work? If I have an interview, should I disclose what I’ve been through? What does it mean to date with scars? What about the impact that hormone therapy or my treatments have had on my sexual health and my ability to have a fulfilling sex life?” Moss says. “It’s kind of amazing how survivorship can really permeate every facet of your life, whether it is work life, sex life, personal life, family life.”
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