We talked to clinical psychologist Dr Charlotte Tottman about the psychological impacts of a cancer diagnosis. Charlotte provides psychological treatment for cancer-related distress. Several years after establishing her private practice in psycho-oncology, she herself was diagnosed with breast cancer.
Anxiety spike
Charlotte highlights that cancer “doesn't just affect your physical well-being, it affects every part of your life”, a process that can start at diagnosis: “The thing that we see initially is a big anxiety spike. It's almost like a physiological and psychological shock, and it sets off in most people ‘fight or flight’. It's like an instant threat to your life, even though with a lot of breast cancer diagnoses, or any cancer diagnosis, very few of them present as an imminent threat to life.”
Charlotte explains that this response can cause a “huge surge of adrenaline and cortisol in your system that takes a while to wear off, certainly through a breast cancer diagnostic process.” She adds, “That's the period where your anxiety is held at that very high level.”
The flocking and the vanishing
“Once you get a treatment plan and you've got schedules and dates and times and appointments and you get into that rhythm, the anxiety does come down,” says Charlotte. During treatment your medical team and loved ones form a support ‘scaffolding’. “There's lots of reinforcement that not only are you going to be okay during the treatment period but that everyone's watching and everyone's holding you. And that's a really nice feeling,” she says. This is something that Charlotte calls ‘the flocking’.
“The flip side of that is when it all stops at the end of hospital-based treatment. Like you have ‘the flocking’, you also have ‘the vanishing’. That’s when you have the vanishing of the medical stuff and the vanishing of your social network support at the same time. It can feel very, very unwieldy and unfamiliar and shaky.”
This leads into a period of post-treatment adjustment.
Post-treatment adjustment
In Charlotte’s experience, not many people have heard of the concept of post-treatment adjustment: “It starts at the end of hospital-based treatment and can last at least two years and often a lot longer.” While people expect that their life will go back to how it was before their diagnosis, Charlotte cautions that “the tail of post-treatment adjustment is often a lot longer than the actual treatment itself."
Post-treatment adjustment is entirely normal, but Charlotte acknowledges that it can be destabilising if you don’t expect it. “People find themselves floundering, not just in the few weeks after hospital-based treatment, but all through the next year and then the next year after that.” Nonetheless, Charlotte stresses, “There's nothing wrong with you … that's exactly what we would expect.”
It’s during this period that the fear of recurrence is very prevalent.
Fear of recurrence
Charlotte points out that fear of recurrence is also normal, and research shows that at least 70% of people who've been through a cancer experience will have a fear of recurrence, with some studies putting the figure as high as 99%.
“You get a cancer experience,” Charlotte, says, “and you get fear of recurrence like a gift with purchase and you don't get to give it back.”
The anxiety that comes with the fear of recurrence is unpleasant, but Charlotte emphasises that it can prompt you to pay attention to your health and monitor your well-being, making you more likely to engage in healthy lifestyle behaviours and go to your medical appointments. “If you don't have a fear of recurrence, you might not do any of those things. And that could mean that you're actually at more risk. And that's not what we want.”
Triggers
Charlotte outlines six main triggers for fear of recurrence:
- Diagnosis: as soon as you’re diagnosed, thinking about whether treatment is going to work and whether the cancer will come back
- Medical reviews: scheduled reviews (scans or routine check-ups) when you are in the same waiting room
- Media stories: news of the death of a public figure from cancer, or a breakthrough in treatment, or new drugs being listed on Medicare
- Friends or family: the diagnosis or death of someone you know
- Cancer anniversaries: key dates such as the anniversary of your diagnosis, the end of chemotherapy or when you had surgery
- Physical symptoms: a persistent headache, getting a rash or finding lump, or a change in bodily function
“Fear of recurrence doesn't go away. If you think about those six triggers, it's quite possible that you might have, say, 10 or 12 triggers across the year, which means, on average, you're going to be triggered every few weeks,” Charlotte explains. It’s therefore important to understand what triggers you, how long your anxiety may last and what “brings it off the boil”, as Charlotte says, so that you can integrate it into your life:
“Almost like an uninvited dinner guest, instead of trying to get rid of you [the fear of recurrence] I'm going to get you to pull up a seat at the table, and I'm going to get to know you, and if I get to know you, you aren't so scary.”
Physical symptoms have been found to have the “most potency” in this context, says Charlotte, but it’s the ones that might require investigation, like a scan or blood test, that can elevate your anxiety for longer until you receive the results. Charlotte suggests you don’t try to make the anxiety go away but “lean into” it and accept that you are going to be anxious rather than resist it.
How to cope with fear of recurrence
“Most of the people, including me, who experience fear of recurrence are pretty good at identifying a symptom and then linking it to the possibility of a recurrence. One of the strategies that I get people to use around a physical symptom is to allow yourself the explanation that it's a recurrence. But then to challenge yourself to come up with at least two more explanations for the same symptom.”
For example, you may have a headache and connect that to brain metastasis, but try to think of two other reasons you may have a headache – have you drunk enough water, are you tired and stressed? The first – assuming it’s a cancer – is an engagement of the emotional mind. Coming up with the other two reasons engages the rational mind.
“What that has the effect of doing is diluting the fear across three possible explanations rather than one. And the second thing that it does, which is really important, is it introduces psychological flexibility” – this is where you no longer rigidly fixate on one single explanation.
Another exercise that Charlotte explores with people is to ask them to imagine turning their fear into an object – what colour is it, how big and heavy is it, what does it feel like and can they push it around? Once the fear can be seen in the mind’s eye, then it can be set aside.
“There are little tricks that you can do,” Charlotte says, “to be able to kind of see it as a thing and then learn to relate to it, and then that empowers you because you don't feel like it's swamping you, it's more like, ‘All right, you're in my life now and I'll figure out how to live with you.’”
Read our article with Charlotte about how to mentally prepare for medical appointments and surgery.
This article has been reviewed by Dr Charlotte Tottman, a clinical psychologist who specialises in the treatment of cancer-related distress. Charlotte is an editor for the Cancer Council of Australia and is a member of the Strategic Advisory Group for Breast Cancer Network Australia (BCNA). She is the host of the podcast Upfront About Breast Cancer – What You Don’t Know Until You Do, developed and produced with BCNA.
This content is brought to you in partnership with Eli Lilly Australia and developed independently by the team at Pink Hope in consultation with medical experts.
