Fighting the Big C: How cancer is as much a physical health issue as it mental

At the age of 41, Vinita Gowda’s world came crashing down. A marathon runner with no family history of cancer, how could she be diagnosed with breast cancer, one of the most prevalent cancers globally?

According to Gowda, her husband and she — both scientists — spent their first couple of weeks in denial. As word of Gowda’s diagnosis got out, the paediatrician who used to see her daughter visited her and her husband one evening. “She told me that the chances of me coming out of this were really high, given how physically fit I was,” Gowda said. But more importantly, the paediatrician made one thing clear: This was a “psychological war” that Gowda and her husband would have to fight.

Two studies published in the journal Nature Medicine on 28 March reaffirm that a cancer diagnosis causes significant mental distress in people — often increasing the risk of self-harm and death by suicide — and call for a collaborative and tailored mental-health support system to reduce these risks.

The first study, coming from Wai Hoon Chang and Alvina G Lai, researchers at the University College, London, looked at the risk of self-harm following the diagnosis of psychiatric conditions in around 450,000 patients with cancer. The researchers found that among bipolar affective disorder (BPAD), depression, anxiety disorders, schizophrenia and related disorders and personality disorders, patients with cancer were the most susceptible to depression. Further, patients with cancer who received chemotherapy, radiotherapy and surgery, were at the highest risk of being diagnosed with psychiatric disorders.

The second study, led by Corinna Seliger, a doctor at University Hospital Heidelberg, also included researchers from the University of Regensburg, Germany. The researchers evaluated the risk of death by suicide for around 22 million patients with cancer and found that the risk was significantly higher as compared with the general population.

Both the studies suggest that patients with cancer require tailored mental health monitoring and care.

Why is cancer a mental health issue?

According to Alvina Lai, “Most research on patients with cancer has focussed on the physical aspects of the condition.” However, Hoon Chang and Alvina Lai wanted to evaluate the psychological impact of cancer on patients with cancer. Further, the duo also wanted to check if a diagnosis of mental health issues could affect the prognosis — that is, the predicted progress — of a patient with cancer.

The Hoon Chang and Lai paper talks about two broad reasons why patients with cancer may be at the risk of mental health crises: One, the “biopsychosocial model”, and the other, the “neuropsychiatric effects of cancer and cancer treatment model”.

As per the biopsychosocial model, the biological, psychological and social changes that a person living with cancer goes through affecting their mental health. For example, several treatment courses for cancer lead to alopecia, i.e. drastic hair fall. According to the Hoon Chang and Alvina Lai paper, this alopecia may lead to body image issues, which in turn affect the psychological state of a patient. Moreover, patients with cancer are often anxious about their prognosis, and those who have recovered from cancer once may often be worried about its relapse, which again is a cause of mental distress.

Along with the biopsychosocial model, the neuropsychiatric effects of cancer and cancer treatment model talk about how cancer and its course of treatment may itself contribute to psychological distress for a patient with cancer. For example, Gowda shared with Firstpost her own experience of going through chemotherapy: “The chemo[therapy] was very harsh. It takes away all the hard work that one does to take care of their body. For 24 hours, you’re nauseated; you have no taste or smell. Basically, you feel like a shell because everything is taken away by this chemo. But, it is required if you have to survive. This is mentally very tough.”

Also, patients with cancer may also show paraneoplastic symptoms. Simply put, these are symptoms that a patient with cancer shows due to certain signalling molecules produced by a tumour, or due to the body’s immune response to the tumour. Often these paraneoplastic symptoms manifest as psychiatric conditions.

It is important to note that the causes proposed by the two models are not necessarily independent of each other. For example, Gowda told Firstpost about how she was anxious about both the recommended treatment not working and her having to leave her four-year-old daughter a little too soon; she said, “I was asking doctors ‘How long can you give me? Can you give me four more years? Two more years? I just have to be alive till my daughter is eight.’ For most chronic illnesses (like diabetes), you follow a regime, and you are not anticipating death. However, if you are a patient with cancer and if a course of treatment doesn’t work, you kind of know when you are going to die.” She also spoke about how she asked her parents to not meet her right until before her surgery, as she anticipated that her parents might break down if they saw her failing health.

The Hoon Chang and Alvina Lai study also talks about the cumulative risk of death by suicide in patients who have been diagnosed with both cancer and a psychiatric illness. For example, the study mentions that patients with schizophrenia have a five-fold higher chance of dying by suicide. Since it has also been shown that patients with cancer have a higher chance of dying by suicide as compared with the general population, the study points toward a combined risk of death by suicide that patients with both cancer and schizophrenia may be at.

The study suggests that the medical fraternity recognises the need for “collaborative psychiatric and cancer care”, which would involve monitoring and recognising mental health distress in patients with cancer, and managing behaviours that may disrupt the cancer-treatment course in patients with psychiatric illnesses. Furthermore, this collaborative psychiatric and cancer care needs to take into account any adverse interactions between the course of treatment for cancer and for a psychiatric condition. For example, the study points out that fluoxetine, a commonly used antidepressant, should not be used for patients receiving the drug tamoxifen as a treatment for breast cancer.

The increased risk of suicide

Corinna Seliger was motivated to study the risk of patients with cancer dying by suicide when she faced a patient with advanced cancer who had attempted suicide. “Besides trying to understand my patient at that time, I… wanted to know if this was rather a rare coincidence or if cancer patients are in general exposed to higher suicide rates,” she said.

Seliger and her team’s comprehensive study found that patients with cancer are at about a two-fold higher risk of dying by suicide. Further, they found that patients with a poor prognosis and with advanced stages of cancer are at a relatively higher risk.

Moreover, they also found that the risk of dying by suicide in patients with cancer is higher in the first year of diagnosis, and the risk comes down significantly after a year has passed since diagnosis. They did not observe any difference with respect to the sex of a patient with cancer, i.e., male and female patients with cancer showed similar risks of dying by suicide.

This study also points out geographical differences in the risk of patients with cancer dying by suicide. As per the study, patients with cancer in the US are at a higher risk of dying by suicide as compared with patients in Europe, Asia and Australia.

Soumitra Pathare, the director of the Centre for Mental Health and Policy, and a mental health practitioner pointed out that “in the Indian context, we need to know the specific stressors faced by those with terminal illness/cancer (which may be different from those in other countries) and address these specific issues.” For example, he points out that patients with cancer in India are faced with a “lack of palliative care and pain management services”, along with “the financial impact of terminal care and cancer care.” Moreover, Pathare added that several patients with cancer have to travel long distances for their treatment, which adds to their psychological stress. This further underlines the need for tailored mental health support for patients with cancer and other chronic and terminal illnesses.

Terminal illnesses

While the two studies mentioned above talk specifically about the risk of mental health crises that patients with cancer face, their implications may very well be relevant for patients with other chronic or terminal illnesses.

Alvina Lai said that indeed “…people living with other chronic diseases may be at a higher risk of developing mental illness”. According to her, “living with a chronic illness can cause long-term stress.” She added, “It will be worth exploring the associations between chronic diseases, their severity and mental illness.”

Pathare also believes that people with terminal or chronic illnesses may be at a higher risk of mental health crises and death by suicide as compared with the general population. As an example, he mentioned that people living with diabetes are at two-fold risk of dying by suicide as compared with the general population. Further, he cited a study that talks about how diabetes can significantly increase the risk of death by suicide. “These figures are very similar to those for cancer,” he said.

The mental health of caregivers

A diagnosis of cancer may not just distress the mental health of patients with cancer, but also of their caregivers. To understand how the mental health of caregivers of patients with cancer may be affected, the writer spoke to Ipsa Jain, a scientist-turned-illustrator from Bengaluru, who was a caregiver for her mother, a patient with an advanced stage of urinary bladder cancer.

Jain’s mother had been previously diagnosed with the same form of cancer and had undergone surgery for treatment. Things seemed okay. However, once cancer relapsed, both Jain and her mother knew that it was time to work towards palliative care. “I wasn’t prepared to let go of her. So, there was a sense of not being able to deal with loss. I had several breakdowns during that time. And I had nowhere to no way to channel that sense of upcoming loss,” Jain said.

Jain pointed out how her grief was often overshadowed by “pragmatic things” that she would do to take care of her mother. This included taking care of daily requirements as well as providing relief when her mother was in pain. “I was doing a lot of physical labour that would exhaust me, so I didn’t think about my mental health at all,” Jain said. The only support system that she had was a circle of friends who were available to “be the ears to [her] troubles.”

After her mother’s death, the grief hit. Jain recounted not socialising with people — or even speaking with them – for about a month after her mother passed away. She said, “What would have been better for me was pre-grief and grief counselling.”

Jain’s experience highlights how caregivers of patients with advanced stages of cancer face mental health crises, but rarely find affirmative mental health support that can help them process the sense of impending loss. “I am still looking for grief counselling, but no therapist is able to provide that,” she said.

Is India equipped to provide mental health support to patients with cancer?

Jain’s experience also highlights the long way ahead for India’s mental health practice to take into account the specific experiences of patients with cancer and their caregivers: when Jain tried to seek mental health support for her mother, she found most support groups to be “call centre-like”. Clearly, these groups were not what she had hoped for, and her mother did not want to engage with these groups either. “What would have helped is talking to people who have had similar experiences – people who wouldn’t give my mother false hope, but would help her process the situation,” she said.

According to Pathare, cancer care and palliative care practitioners in India may not even be aware of the need for providing patients with mental health support. “Except for the Tata Memorial Hospital — which has its own mental health service for patients — most cancer care providers do not see mental health support as an integral part of the service they provide,” Pathare said.

Gowda stresses that mental health support during cancer treatment can no longer be thought of as optional; rather, according to her, “it should become a part of the protocol”. The hospital where she was getting treated did offer her psychiatric help eventually, which she did take.

Having survived cancer, Gowda now suggests that anybody battling cancer seek mental health support as soon as possible. “Because it is required,” she said.

The author is a science journalist. Views expressed are personal.

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