At first, it didn’t register with Serena F. that she’d been diagnosed with Non-Hodgkin’s lymphoma.
(Global News has agreed to withhold her last name to protect her anonymity.)
The Winnipeg resident was just 23 when she walked into the emergency room with a persistent cough and trouble breathing. It had become so bad, she couldn’t lie flat on her back without feeling like she was choking.
Eventually, Serena was given a chest x-ray, and doctors discovered she had a large tumour behind her sternum, crushing her lungs and her windpipe, and cutting off her vena cava artery.
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It turned into a three-week hospital stay, where she was given a biopsy, emergency surgery and her first round of chemotherapy and radiation. For the first week, Serena was still focused on typical 23-year-old concerns — like when she could go back to work.
“I was very disillusioned … about what cancer treatment entailed and how it would affect me.”
Then the reality of her diagnosis hit her like a ton of bricks, the 33-year-old told Global News. “I just started crying … it started sinking in.”
Serena’s experience is, unfortunately, very common for cancer patients.
A person’s mental health is hugely impacted by a cancer diagnosis, but it’s rarely prioritized in the treatment plan.
Serena’s mental health took a nosedive, so she started to use a journal to work through her thoughts. She was also assigned a psychiatrist for the duration of her stay, which she found extremely helpful.
But once she left the hospital, she was on her own. Before the chemotherapy started to cause severe physical symptoms, she thought she was doing well.
Soon, the cumulative physical impact of treatment took hold and she struggled to do basic physical tasks. She was angry.
“At that point, I was pretty much still a newlywed — we’d only been married two years. We had plans to have kids, buy a house … get a career on track. That was the plan,” Serena said.
“Now, with the cancer, it was like, ‘well, f**k you.'”
At the same time, she struggled to connect with her friends, none of whom knew what it was like to have cancer. All of this, in combination with the stress of undergoing a particularly intense form of chemotherapy called R-CHOP, led Serena to seek mental health support again.
“Every time you visit your doctor, you’re given this little chart and asked to fill it out. It says, ‘on a scale of one to 10, how are you feeling?'” she said.
“They had the right idea with the chart, but I found that as I went more on the scale feeling depressed, feeling angry, they didn’t actually ask about it. It wasn’t until I started telling them (that) I was constantly angry.”
How a cancer diagnosis can damage your mental health
Experts say it’s totally normal for someone’s mental health to be impacted by their diagnosis.
“It varies a little bit depending on a patient’s situation, but the first common reaction (to hearing you have cancer) is overwhelming … anxiety and fear,” said Dr. Gary Rodin, head of the department of supportive care at the Princess Margaret Cancer Centre in Toronto.
“You get (something like) an acute stress disorder.”
There’s plenty of data to support Rodin’s claims.
A 2018 study found that in patients with cancer, an average of 20 per cent develop depression and 10 per cent suffer from anxiety — both of which, left untreated, can lead to a reduced quality of life.
In severe cases, cancer diagnoses have been proven to increase the risk of suicide. A recent study of more than four million adults in England showed that cancer patients had a 20 per cent increased risk of suicide compared to the general population.
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In her experience as a registered counselling therapist, Amiee Wilson has seen the way cancer can damage a person’s mental health.
“A patient can start to grieve the loss of their health and the changes that come from their failing health,” she said. “This grief can bring … a host of feelings like anger, sadness, depression, anxiety and fear.”
Every patient copes differently, but it’s not uncommon to need professional help.
“(Some people), prior to their diagnosis, may have had a better outlook on life and are able to cope with such … devastating news,” she said. “On the other hand, people who struggle with everyday stressors may have a harder time with negative feelings, depression and anxiety.”
Stigma persists, even though mental illness can be life-threatening
Stigma surrounding mental health can prevent patients from coming forward about their concerns, but it can also prevent doctors from being proactive about mental health during cancer treatment.
This can cause patients who require mental health support to slip through the cracks, according to Todd Leader, vice president of support programs for Atlantic Canada at the Canadian Cancer Society.
“(Patients) talk about not knowing where to get help, not having timely access to mental health services and feeling embarrassed to ask for help,” he said. “Most report feeling unsupported.”
This gets even worse when cancer treatment ends because patients lose that tangible point of contact with their health-care providers.
“People feel dropped or set adrift. They lose access to whatever minimal supports were available,” Leader said.
“In this survivorship period, they often have access to follow-up and management of their physical symptoms, but even less access to management of their mental health symptoms because of stigma, as well as … design problems in the public mental health programs.”
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Mental illness can wreak havoc on a person’s quality of life — something that, in Rodin’s view, should be a priority for cancer patients.
“What we’re trying to do is help people manage cancer and face the progressive disease, but also to live their life at the same time,” Rodin said.
“That is something that gets lost. There’s only one life to live, and sometimes, there’s no later life to live. So how can they live their life as well as they can, even as they go through cancer treatment?”
Talking about mental health care from the start
When it comes to incorporating mental health into the typical cancer treatment plan, there are several factors to consider.
For Leader, it means to transition towards what he calls a “client-centred system of care.”
“In a client-centred system, we would treat someone as a whole person and not as two parts: the cancer and the mental health,” he said.
“Mental illness symptoms are a part of cancer, not a separate or secondary issue.”
Currently, most cancer care systems do have some psycho-social support built in, but Leader says most are under-resourced. This often means only those patients with the most severe mental illness receive care.
With this approach, both Leader and Rodin aim to confront mental health issues before they develop into something more serious.
“We know that many mental illnesses are progressive. That means when early symptoms begin, the problem will get worse if untreated,” said Leader. “Therefore, the less access people have to the right service, the more likely they are to become more ill and require even more intensive (and expensive) interventions.”
“Early support would help us keep healthy people healthy.”
The power of people who understand what you’re going through
Charlene Charles, 42, was diagnosed with Hodgkin’s lymphoma in 2015, and she’s found the experience extremely isolating.
The Markham, Ont., native has supportive friends and family, but none of them really understand what she’s going through.
“I have fear and anxiety about the unknown. I have a terminal diagnosis, and there are days when I’m just feeling hopeless … like I can’t go on,” Charles said.
She has accessed several mental health professionals throughout her treatment, and she’s currently working with a psychologist on a regular basis, which has been helpful. However, her mental health has improved most significantly since she started attending the Young Adult Cancer Canada (YACC) peer-to-peer support group.
“When I went to a retreat for the first time … that was the first time I had people like me actually in a room,” she said.
“I didn’t have to sit there and explain everything. They just got it.”
Peer-to-peer support is a big part of the Canadian Cancer Society’s approach to mental health care.
Leader advocates for a peer support network so cancer patients can “talk with someone who has been there, understands and can provide basic support to manage their mental health,” he said. When this support is successful, it can even prevent “escalation” to mental illness.
Currently, the Society has a program that connects cancer patients or survivors to others with similar experiences, and Leader says it’s been very effective.
If you or someone you know is in crisis and needs help, resources are available. In case of an emergency, please call 911 for immediate help.
The Canadian Association for Suicide Prevention, Depression Hurts and Kids Help Phone 1-800-668-6868 all offer ways of getting help if you, or someone you know, may be suffering from mental health issues.