Navigating the Mental Health Challenges of Cancer Diagnosis, Treatment, and Survivorship

The mental health struggle that accompanies a cancer diagnosis is real, and the burden of dealing with so many conflicting emotions falls not only on the patients but also on their caregivers, families, friends, and physicians. Having cancer is stressful and receiving a cancer diagnosis can bring a normal-seeming life to an abrupt halt overnight. Daily life becomes a series of never-ending appointments: biopsies, MRIs, ultrasounds, CT scans, consultations, treatment simulations, blood work, genetic testing, surgery, chemotherapy, radiation treatment, and on and on and on. The physical toll is evident, and the deeper emotional toll, too, is there from day 1, frequently manifesting in many days of tears, lots of anger, and too many questions to count. But the true emotional toll of hearing you have cancer, of enduring treatments that wreak havoc on your body, of emerging from a sort-of hyperfocus on survival often simmers just below the surface and can take weeks, months, maybe even years to work their way out.

There is no way to truly make someone understand what it means to be a patient with cancer unless they have been there before, whether as a patient or a caregiver, proving there will always be a need for comprehensive mental health services in cancer care to help heal the body and the mind. The complexity of these mixed emotions serves to highlight how vital mental health support is to cancer survivors.

Recent data from a Texas Oncology survey of patients with cancer paint a complex picture of the emotions they feel throughout their cancer journey. Although many are grateful for their ability to get through the toughest of treatments—45% “felt grateful” for their body’s perseverance—just as many, and sometimes more, expressed negative views of themselves. Half felt less attractive, 42% felt less self-confident, 37% felt uncomfortable in their own skin, and 31% felt less feminine or less masculine.¹

Chandler Cortina, MD, MS, FSSO, FACS | Image Credit: Froedtert & the Medical College of Wisconsin

Patients also report feeling angry, sad, fearful, anxious, depressed, forgetful, shameful, alone, distressed, overwhelmed, lonely, guilty, and self-conscious.^2-5 Not only is day-to-day life changed for the foreseeable future, but also the uncertainty of each new day brings with it a whole new set of challenges from having to navigate this new sense of a changed self. Cancer-related stress also has been linked to many adverse outcomes, chief among them tumor growth, inhibition of cell death, cancer recurrence or progression, and decreased quality of life.^6-9

Speaking with The American Journal of Managed Care^® (AJMC^®), Chandler Cortina, MD, MS, FSSO, FACS, assistant professor of surgery and breast surgical oncologist at Froedtert & the Medical College of Wisconsin, explained, “Cancer survivors go through all this treatment and you come out on the other side, and you’re alive and you’re well from a medical and clinical standpoint. But the psychological and social impact that going through a diagnosis and going through treatment has on someone is different for everyone.”

“It’s complicated. Oncologists are not trained in mental health support. I do wish it were more of a part of our training. We all should be able to prescribe anxiety medications and depression medications, and recognize when that’s necessary,” Kathryn E. Hudson, MD, hematologist/oncologist and director of survivorship for Texas Oncology, added in an interview with AJMC. “I do believe in a perfect world, every patient could access mental health support. Ideally, mental health support should be a part of all cancer care.”

Kathryn E. Hudson, MD | Image Credit: Texas Oncology

To this effect, when asked about the support they thought lacking during their cancer journey, patients in the Texas Oncology survey said they most often wished for more mental support (39%) and emotional support (46%).¹

However, 2 principal factors exert a strong influence on the ability to access mental health support: the ability to pay for these services and to get these services reimbursed by your insurance company, with premiums, co-pays, and deductibles all contributing to an often quite expensive bottom line. The average hourly cost varies considerably. For example, regular per-session visits can range from $75 or $80 to $100, $250, even $500 per hour depending on whether insurance does or does not cover a visit and whether the visit is for initial patient intake or a regular weekly or biweekly visit.^10-14 It’s the rare insurance company that covers the high price of these services, if it covers them at all. Mental health coverage is not a required coverage for private insurers—most cover just a portion—whereas it’s a mandate for plans offered through the Affordable Care Act and on federal marketplaces and Medicaid.^15-16

There is somewhat of a panacea in the form of The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act, originally passed in 2008, with the final regulation published in November 2013. The law mandates, in theory, coverage of mental health (and substance use disorder) benefits on par with those offered for medical or surgical benefits by nonfederal governmental plans and large group health plans—50 or more employees—for those who choose to offer the coverage. However, insurance plans do not have to offer the coverage.¹⁷

“Oftentimes it’s not reimbursed by insurance, so it’s expensive. There’s a huge amount of financial toxicity that goes along with counseling and psychiatry, unfortunately, and it’s really hard on patients who experience barriers,” Hudson said. “And then what happens if you’re trying to find a counselor and they’re either not taking patients, or it’s going to be expensive, or you have to call 5 different offices…you’re just going to give up because you have a lot of other things to be thinking about and spending your energy on. That can lead to worse quality of life and mood symptoms.”

There is so much we could explore that extends beyond the scope of this article. The health care sector and a patient’s support network (children, grandchildren, immediate/extended family, our chosen families) need to be asking themselves how they can better help patients with cancer overall—not just those with a new diagnosis, a recurring diagnosis, an advanced diagnosis, a secondary cancer (a cancer stemming from chemotherapy, radiation, a genetic mutation), metastatic disease, or early-stage disease, but also survivors.^18-20

There are so many facets crucial to the cancer journey that call for improvement, with just a few of these being social support, education on coping mechanisms and self-care strategies, exploring changing relationship dynamics, survivorship care plans, advocacy, awareness, and empowerment. These areas are crucial because they address the complexities and multifaceted nature of the challenges survivors of cancer face.

“It’s important whenever we treat cancer patients, we not only treat the disease but treat the person and realize that we don’t want people to just survive cancer,” Cortina emphasized. “After cancer, we want people to survive and thrive, still live their lives, and really embrace the time that we all have. Because all of us, at the end of the day, are living on borrowed time.”

References

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2. Your emotions after treatment. Dana-Farber Cancer Institute. Accessed March 1, 2024. https://www.dana-farber.org/patient-family/survivors/caring-for-yourself-after-cancer/your-emotions-after-treatment#:~:text=They%20may%20feel%20shame%20or,or%20loss%2C%20and%20hair%20loss
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