You’d think when a cancer patient is told they’re cancer-free, they would feel a sense of relief.
While relief is common, it’s not always the case, said Chery Hysjulien, RN, PsyD, a Sanford Health nurse and health psychologist who specializes in working with cancer patients in Fargo, North Dakota.
She said just because cancer left your body, it doesn’t mean it’s fully gone. There’s a mental aspect that lingers with many patients.
“People think when patients or their loved ones ring the bell, they’re like, ‘yay, we’re done.’ But patients often say, ‘I do not feel done. I am very far from done. And now this thing is hanging over me and I can’t shake it. It’s not going to go away,’” said Hysjulien.
Dealing with fear of recurrence
Hysjulien’s day-to-day consists of supporting cancer patients not only during treatment, but afterwards.
She said fear of cancer recurrence, or FCR for short, is extremely common for all cancer types. One review of research indicated approximately 73% of cancer survivors have some degree of FCR, and 49% report moderate to high FCR.
“It’s most prominent the first year after cancer,” she said. “The second year it goes down a little bit, then rises up when things like annual visits are on the calendar, or when somebody else gets diagnosed, or someone else that they went through treatment with had a progression.”
Hysjulien said it’s only normal to have this fear, no matter what stage of cancer one has.
“Even stage four patients, they have a FCR even if they have no evidence of disease.
“Patients often think to themselves, there’s no evidence of cancer after scans, but when will the next progression come? When will the drug stop working? Will the drug stop working? Will there be another drug to try after that?”
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Hysjulien said she and her team focus on teaching patients cognitive, behavioral, and mindfulness-based therapies.
She described cognitive therapy as becoming aware of one’s thoughts and deciding whether they’re helpful or unhelpful, rational or irrational. She and others help patients work toward letting those thoughts go or changing those thoughts.
“So, ‘what if’ becomes ‘if then.’ And only if it’s then, because then might not even happen,” she said.
Understanding stress and the brain’s response
She also teaches patients that when they’re told they have cancer, their brain reacts in a very specific way.
She explained humans have a stress nervous system called the sympathetic nervous system, and a relaxation system called the parasympathetic nervous system.
“Our stress nervous systems we want activated. They’re what make us react when somebody almost hits us with a car. They’ve got all these reactions that happen that are healthy – but not (healthy) long term,” she said.
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An example: an otherwise healthy 40-year-old who was just told they have an aggressive form of cancer.
The first thing that she and her team would do is teach this person ways to slow their body down, by calling on the parasympathetic (relaxation) nervous system to offset the sympathetic (stress) nervous system.
It’s not only uncomfortable to feel that stress, but it’s also hard on one’s body. And when a patient is already under the stress of chemotherapy, adding on emotional stress doesn’t help.
“When we talk about trying to optimize our healing as patients are going through cancer treatment, you don’t want their body working against them. Those two systems are on a counterbalanced system,” she said.
“We can try to do things that raise up relaxation nervous system: breathing, imagery, mindfulness. If we do those things, the stress nervous system and all the negative sequelae physiologically and emotionally will go down as well,” she added.
Survivor’s guilt
Survivor’s guilt is very common. Hysjulien said essentially, it’s when something is a certain way, but you don’t think it should be.
She sees it in both people who themselves have been diagnosed with cancer, and those who haven’t.
“I’ll give you a personal example. My sister was diagnosed at 38 with breast cancer, and metastatic breast cancer at 42. My mom and dad were in their 70s, and my mom was 76 when my sister died. They were always negotiating as if it was negotiable.
“There’s nothing you can do to make her cancer go away. It’s not a trade; it’s not a switch. You can’t do it. So, helping people realize that it stinks. And it’s hard,” she said.
Everyone’s treatment plan for cancer is different. However, it’s very common for patients to get to know each other extremely well, because oftentimes they see each other very frequently.
Because of this, she sees patients question when outcomes vary.
“Why are they not doing good, but yet I am doing good? Why did I survive, and they die? The answer is nobody knows. And it’s not something you did or didn’t do. It just something that is. In psychology, we call this concept radical acceptance. Acceptance of what is,” she said.
Caring for the whole patient
Hysjulien said before she was a psychologist, she was a nurse. Because of this, she’s able to blend the two worlds together to support patients, and their families, every way possible.
“My language is medicine, but I’ve always worked in this kind of integrative kind of concept between the two worlds (of nursing and psychology). But what we’ve done here and what Sanford has promoted in supporting holistic care for cancer patients is phenomenal.
“I’d put our survivorship programs front and center,” she said.
The survivorship programs are geared towards supporting cancer patients and their families through support groups, a survivorship specific clinic, education retreats, cancer survivor mentors, and access to licensed therapists and psychologists like Hysjulien.
Learn more
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Posted In Cancer, Cancer Screenings, Cancer Treatments
