Breast Cancer Survivorship and Its Impact on Mental Health

In 2018, Hil Moss was lounging around, casually watching television, when she touched her chest and felt a lump. She was 28 at the time, and with no family history of breast cancer, her doctor reassured her that she had nothing to worry about. But after a few more appointments, Moss was diagnosed with stage 2 breast cancer.

She underwent a 14-month treatment plan, which included three months of chemotherapy, a double mastectomy, and a tissue-based reconstruction, later followed by hormone therapy. Over five years later, Moss is both a breast cancer survivor and the cofounder and CEO of VivorCare, an organization focused on offering support to other survivors.

Soon after she was diagnosed, Moss says she expected the most difficult part of her experience to be the treatment, but a fellow survivor warned her that it would actually be the months after treatment ended that would be the hardest. Sure enough, Moss 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. You're in chemo, you feel horrible, how could it possibly be worse? But it kind of is,” Moss says. “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.”

More People Are Surviving Breast Cancer

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 people diagnosed with the disease are surviving, but that living through this experience may, “come with a price.”

“I've been an oncologist for a long time, and early on, we were just happy that people survived. We didn't really look at what their quality of life after survivorship was,” Dr. Meyers says. “I always like to say that the cancer treatment may be over, but the cancer experience is far from over.”

While not every breast cancer survivor will experience psychological issues – such as anxiety or depression – experts say that there are some people who may 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.”

Though mental health may certainly be affected after cancer treatment, Moss says that the lasting impacts can be 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 [other] treatments, has 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, or family life.”

Fear of Recurrence Has an Impact on Mental Health

Moss says that when she feels any type of pain in her body, she wonders if her cancer has returned. And 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 instantly feels 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

Your mental health and mood may also be affected by the drugs used in many treatments, according to experts. Hormone therapy, for example, is one method of treatment that may lead people to experience depression, but its impact on psychological health is often overlooked, Meyers says. 

Elizabeth Ayers-Cluff, founder of 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 because of 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. “By the end of the journey, the depression was set into me for months.”

When Ayers-Cluff was diagnosed 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 a decade before.

“I just told myself I was going to do all I could for my mental health this time,” Ayers-Cluff says.

Adjusting As You Enter Survivorship

Experts and people who have been diagnosed with breast cancer say that many people are able to manage their mental health with the help of exercise, mindfulness and meditation practices, art, 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.

You may also find that making certain social and lifestyle changes after completing treatment can have a positive impact, regardless of whether or not you find yourself running into mental health challenges post-treatment.