Mending the Mind After Cancer

In November 2019, Marlena Murphy completed treatment for triple-negative breast cancer and was fully ready to move on from this chapter of her life.

However, during a radiation session, Murphy told the radiation oncology nurse practitioner about the time she had heart palpitations from chemotherapy pills while trail walking with a friend. The conversation quickly turned into an emotional one for Murphy as she explained that she hadn’t been able to reach the halfway point of the trail. That’s when her nurse recommended speaking with a mental health professional.

“That was the first and only time during the journey that someone talked with me about mental health during treatment. But again, this was after treatment,” says Murphy, 46, of Atlanta. “It wasn’t until I had a break- down moment where someone — my nurse practitioner — saw I needed to speak with someone, and then a social worker, again, saw that I needed to speak with a therapist.

“I thought I was doing well. But I wasn’t.”

Although mental health is a crucial aspect of quality of life, it isn’t talked about enough before and after cancer treatment, experts say, which can be detrimental to survivors returning to their lives after treatment ends.

The revelation Murphy had with her nurse practitioner allowed her to consider how important it is to take mental health seriously. She met with a therapist and learned why she felt so emotional about not being able to climb and complete the trail. Through therapy, Murphy understood that feelings of sadness or anger regarding cancer were normal and that her experience with cancer was entirely out of her control.

In August 2020, Murphy went back to school for a master’s degree in clinical mental health counseling. Going to classes and talking with her classmates provided her time to deeply reflect, which she says was “a real breakthrough.”

Still, Murphy found that everyday tasks were not what they used to be after treatment, noting that her “chemo brain” — a term commonly used to describe the mental toll taken by chemotherapy — “really messes with the mind.” She says it makes her more forgetful, which causes her to mistakenly remember things that aren’t true and occasionally causes confusion when talking with others.

A little more than 2 years after the end of her treatment, Murphy experienced a recurrence and received a diagnosis of metastatic triple-negative breast cancer in March 2022. Nonetheless, this time around, she was in a healthier mental and emotional place compared with the time she received her initial diagnosis.

“Even though this diagnosis was metastatic, the fear was not there. I have strong faith [that] the fear was not there because I’ve recognized that I was on a path to follow my purpose: going back to school and completing my master’s degree,” Murphy says. Now Murphy is on the other side, counseling patients and survivors with cancer. Her role as a therapist grants her the opportunity to comfort and empathize with her patients as she helps them work through their thoughts and emotions. She continues to manage her mental health by completing jigsaw puzzles and “staying in the present moment,” and she still enjoys trail walking.

A Need for Mental Health Discussions

The issue of mental health during and after treatment isn’t widely discussed enough in the clinical setting, says Dr. Patricia Ganz, medical oncologist, distinguished professor and associate director of population science research at UCLA Jonsson Comprehensive Cancer Center in Los Angeles.

“What has happened is [patients], physicians and people on the care team underestimate the psychological impact of cancer,” Ganz says. “The patient is realizing ‘[Treatment] may be over, but my life is forever changed and I’m still a cancer patient/ survivor. I have to face the future; the disease could come back and I’m facing the side effects of treatment.

When will they go away? Can I go back to work?’ The weight of dealing with that kind of experience in the post-treatment period can be very difficult for many patients.”

Survivors and patients are typically more reluctant to introduce the topic of their mental health and feelings to medical professionals, Ganz says, but asking about their mental health history before cancer, at diagnosis or before treatment is important.

“[Medical professionals] don’t do a very good job of asking people about whether they had anxiety or depression before they had cancer, [which we know] because what we found in our own research is those are often the people who have more problems and more difficulties afterward,” Ganz explains.

Anxiety and depression are among the most common internalizing disorders associated with poorer mental health in survivors, agrees Daniel Hall, a licensed clinical psychologist at Massachusetts General Hospital and Harvard Medical School in Boston. He also notes that the long-term effects survivors experience may also contribute to their mental health.

“It’s very common after cancer treatments or even during cancer treatment, that there can be late or secondary effects of medications. Some of the most common concerns facing cancer survivors include pain, fatigue and insomnia,” Hall says. “We know that one in 10 adults in general has insomnia or chronic difficulties with poor sleep. But that rate triples after diagnosis of cancer. In other words, 30% of cancer survivors are estimated to have insomnia.”

‘Go Back to Work’

Chris White, a 42-year-old Colorado native who now resides near Dallas, received a diagnosis of metastatic mucosal melanoma in 2018. This form of melanoma begins in the mucous membrane and is considered rare, accounting for approximately 1% of all melanomas, according to Memorial Sloan Kettering Cancer Center in New York.

At first, White thought he had a hemorrhoid, and left it alone until a different lump grew near his groin. White was referred to a surgeon, who strongly believed White had a rare type of hernia. Nevertheless, the pathology from the surgery confirmed that the lump was indeed cancerous.

Chris White advocated for himself after being released from the clinical trial while having to fill out an end-of-life testament.

Photo credit: Gernelle Nelson

In October 2019, when White was 37, his doctors suggested enrolling in a clinical trial, and by November, he was enrolled and ready to receive treatment. But in December, he was released from the trial due to a brain metastasis that was found during a scan.

“That time was probably the most emotional and gut-checking time in my whole experience, because along with having to fight my way back in, I also had to fill out my end-of-life testament, as well,” White says.

But that didn’t stop White: he chose to advocate for himself against insurance, because it was his only option to live. He went back to the clinical trial and was approved to reenter before it closed, where he finally received treatment in January 2020. He has chosen to receive quarterly scans, which have been clear since the end of 2020.

During White’s experience with cancer, he notes that he “looked fine” and went to work when he could, even refusing his family’s offer of a GoFundMe page. However, after cancer, his relationship with his family was “different and frustrating.” When White explained his experience to his family, along with his time during the clinical trial, he says they tried to sympathize as much as possible.

Yet, White’s employer had no sympathy.

“I was trying to explain to others and my employer about how I was feeling and what was going on, and it was like, ‘You’re OK now, just go back to work,’ ” White explains. “I felt like my time to explain myself and really be emotional just kind of expired. It was like, ‘Well, your time to do that was when you were going through it, and you didn’t do it.’ ”

When White was released from the hospital in January 2020, he says it wasn’t long before the COVID-19 pandemic isolated him from society and the life he wanted to integrate back into, leaving him alone.

White says that he finds it easier to talk about it “down the road” when it’s further in the past.

After quitting his career as a new home construction manager, White is now a full-time patient advocate and inspirational speaker.

“Through different social media platforms, I found that the more I share, there might not be someone exactly like me, but there’s someone with a similar spirit or [who can] relate,” he explains. “That’s been very rewarding to let me know that what I’m doing is meaningful. It’s like the whole purpose of life.”

Ways to Manage Mental Health

Now, there are cognitive behavioral therapies for cancer-related fatigue and pain that have been developed to help survivors better manage their behavior, thoughts and emotions, which can help with pain and energy, Hall explains.

Although there are some adequate solutions for long-term effects caused by treatment in some cases, they may still affect the everyday lives of survivors. Fear and worry, Hall says, are common challenges that affect survivors’ quality of life.

“One of the strategies we teach cancer survivors in our research and clinical program isn’t to avoid worrying, but to go ahead and worry, and to do it in a time and place of their choosing. We call this ‘worry time, ’ ” Hall explains.

Choosing specific places and times to worry allows survivors to think about what bothers them, but only for a limited time, he says. “It won’t be when you’re eating dinner with your family. And it won’t be at night when you’re trying to go to sleep. But maybe it’s during … some other part of your routine when you’re allowing yourself to tap into those [thoughts].

“When worry time is over, it can be helpful to do something pleasant and calming. Over time, this technique trains our brain to disengage from worrying — something many cancer survivors appreciate.”

Engaging in at least 150 minutes of moderate activity each week has also improved survivors’ mental health, particularly with depressive or anxious symptoms, as well as mood, according to Natasha Burse, a behavioral scientist and post- doctoral research associate in the school of nursing at the University of North Carolina at Chapel Hill and a survivor of breast cancer.

She defines physical activity as “any bodily movement,” whereas exercise includes planned and structured activities “designed to improve overall health and fitness.”

“There is a variety of physical activities or exercises that cancer survivors can engage in, such as walking, cycling, water aerobics [and] pickleball, so I really encourage survivors to get help from a certified exercise trainer if they need it and consult with their primary care doctor or oncologist before starting an exercise program,” Burse says.

In addition to exercise, Ganz suggests eating a healthy diet and getting a good night’s sleep, which can collectively help the body because “the body and mind are connected.” Integrative therapy practices that can reduce fatigue, insomnia and depression include mindfulness, yoga and Tai Chi, Ganz says, which may “provide excellent support for the mind and body.”

Finding Support

Attending a retreat tailored for survivors, sometimes organized based on a specific cancer type, can also be an option for support, Burse says. These retreats allow attendees to engage with each other while participating in scheduled activities. She says survivors can reach out to local cancer support groups, non-profit organizations or ask their cancer treatment center if there are any upcoming retreats.

“It’s a nice opportunity to kind of relieve some stress, and just to have a little bit of fun,” Burse says.

Receiving group support that is moderated by a trained facilitator who can provide real-time support is also optimal for survivors, Hall notes. Although groups on social media platforms may help connect people with similar stories and experiences, he says unmoderated forums may amplify feelings of depression and anxiety, if survivors are looking for group support.

Hall says that groups on social media “can be great when it’s a source of resiliency,” meaning the content they interact with should not cause comparison or make them feel defeated.

Joining programs, such as a mind-body program, may help with addressing fear of recurrence or help working through anxieties after cancer, Hall says. Most programs typically span a couple of months and are delivered on Zoom in a group setting, which encourages survivors to learn ways to manage stress with- out having to go for in-person visits at the hospital.

“I’d recommend [patients try] to find a mental health care professional,” Hall says, “or by contacting their insurance to see which of their providers also may have experience in cognitive behavioral therapy and behavioral medicine.”

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