How to be ‘vigilant but not fearful’ about cancer recurrence

“Go away and live your life” is what cancer survivors are often told at the end of treatment. But it is then, as the medical whirlwind following a cancer diagnosis abates, that patients tend to be most vulnerable mentally.

Part of that emotional turmoil will almost inevitably be the fear – what if it comes back? The emphasis has always been on medical recovery, says Dr John Donohoe, a clinical psychologist with Cancer Care West, but now greater attention is being given to the importance of psychological recovery too. The number of cancer survivors in Ireland has exceeded 200,000 for the first time, according to the latest report from the National Cancer Registry. One in every 24 people in the population has survived cancer; for almost half, it was either breast or prostate cancer.

For Sharon McClean (48), the worry of recurrence consumed her from the outset of being diagnosed with breast cancer in September 2020. All she could think about was: “Even if they deal with all this, and I get the surgery, the chemo, the radiation and everything, what if it comes back?” Her grandmother had had breast cancer and “although the breast cancer didn’t come back, she had a secondary cancer, leukaemia. So that was all I kept thinking about.”

It was a couple of months after McClean had stopped breastfeeding her then one-year-old daughter Zoe, she noticed a mass in her right breast. Although slightly uneasy, she presumed it was just a blocked duct. Her GP did not think it was anything to worry about either, but referred her for further investigation. It came as a big shock when she was told, on the same day as an ultrasound and biopsy had been performed, that it was cancer.

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“There was nobody with me, as it was Covid.” As they were giving her further information, all she wanted to do was run out the door. She doesn’t remember the drive home from Letterkenny to Creeslough, Co Donegal. “The worst part was telling my family and friends,” she says, choking at the memory.

After a single mastectomy, followed by chemotherapy, radiotherapy and immunotherapy, she is on hormone treatment for the next 10 years. Early on during her initial treatment, McClean started counselling, “probably because I couldn’t stop crying”. She struggled to breathe when trying to talk about her illness. Both her GP and Letterkenny hospital recommended she go to Cancer Care West (cancercarewest.ie) for psycho-oncology support. Counselling helped her cope with the worry of recurrence and now she is “vigilant but not fearful. [I am] not living in a constant state of panic.”

According to the National Cancer Strategy (2017-2026), “Approximately 20-30 per cent of patients with cancer will develop some form of psychological disorder across their cancer trajectory, including in the survivorship phase. It highlighted lack of progress in developing psycho-oncology services, as had been recommended back in 2006. A psycho-oncology model of care was approved in 2020, with funding allocated for 19 more posts in the 2021 service plan.

Understanding and managing the often-unspoken fear of cancer recurrence was the theme for a webinar, Living with Uncertainty, run by Cancer Care West in November. Most survivors will entertain the darkest of thoughts at certain points, says Donohoe, who works in the organisation’s Letterkenny centre. “They will be kept up at night wondering is this thing going to come back?”

Yet people will often ask, “Am I the only one?”

“They feel they should be grateful that they have survived when others haven’t and they shouldn’t be feeling like this.” The webinar was held to raise awareness and to try to help people “unhook” themselves from disturbing ruminating.

Dr Mairead Brennan, a senior clinical psychologist in Cancer Care West’s Galway centre, likens cancer diagnosis and treatment to a tornado passing through a house. During it, patients are in survival, or even combative, mode. Afterwards, when people around them are full of positivity about how “it’s all behind you”, patients have time to survey the rubble.

“It’s only then you are realising it’s not over,” she says. “The rebuild is only beginning and you are still navigating side effects of treatment that, typically, don’t leave for a while. The body has been through trauma, which can lead to heightened anxiety and sleep problems. We lose trust in our bodies after an illness such as cancer. Any niggle can take on sinister proportions and raise fears of recurrence. Focusing on discomfort exacerbates how it feels, which in turn can seem like confirmation it is something to worry about.

“When we are anxious our thoughts become facts,” says Brennan. It is helpful to realise our thoughts can become inaccurate when we are anxious. For cancer survivors, there is also fear of the fear. “Everyone is told stress can cause cancer,” she says. “If we’re not managing our anxiety well, we can worry about the harm we are causing ourselves. So, it becomes that vicious cycle.”

Cognitive behavioural therapy (CBT) and mindfulness are ways to manage anxiety but a lot of psychologists, says Donohoe, now use acceptance and commitment therapy (ACT). It helps orientate people towards a values-driven life, “as opposed to goals because goals are pass or fail, whereas values give you a direction”. People use ACT strategies to “ground themselves in the here and now and get a bit of relief from those tormenting, cyclical patterns of thinking”. With practise, “it can begin to tone down the chatter in your mind and body”.

Susan Dillon (50), living in Trim, Co Meath, was plagued with fears that her illness was back when she suffered severe side effects from hormone blockers prescribed after treatment for oestrogen-positive breast cancer. Taking medication to put her into a forced menopause started off “relatively okay” but then she developed joint pain and memory issues.

“The joint pain got much worse, to the point that I would wake up in the middle of the night screaming as if somebody was trying to rip the bones out of my leg.” Doctors tried various drugs but, after two years, took her off everything “because I had no quality of life”, says Dillon, a survivor volunteer with the Irish Cancer Society (cancer.ie).

“During those two years, with the pain getting so bad because of the side effects, they did lots of different scans, just to make sure it hadn’t gone into the bones, that it wasn’t in the brain.” With every new pain she would think the cancer had returned.

A year off hormone treatment and in less pain, although she has osteoarthritis, “I don’t dwell on the fear of [recurrence] so much”. She hasn’t had counselling but found solace in Hawaiian spiritual meditation, known as Ho’oponopono.

Vip Patel (61) has worried about getting cancer elsewhere in his body, since being treated for prostate cancer just over five years ago. But he thinks less frequently about it now. Coincidentally, the day we speak he is just in from having a blood test that he books twice-yearly with the GP to measure his prostate-specific antigen (PSA) level.

An environmental scientist, he tracks his PSA results. In March this year, his PSA was .22, compared with a reading of 6.5 just before his biopsy and diagnosis in 2016. However, at his last appointment with a consultant in January, Patel was surprised to hear him say they needed to keep an eye on him for 10 years.

“It kind of put me back a little bit. You always hear ‘five years’ and then you’re in the clear. That got me to think why does he want to keep an eye on me for 10 years? Is there something that they are not saying? Will it come back? I thought I was in the clear but I’m not.” But he sees little point in attending the consultant to review PSA numbers that he is monitoring himself, so he says he will not return “until I physically feel there is something amiss, or I get a spike in my results”.

McClean is proactive in managing her health too, having become vegan in the belief that a plant-based diet would be better for her. “It’s about being part of your own treatment.” She feels she is helping to reduce the likelihood of cancer returning. Her husband, Gregor, has been more fearful of recurrence than her, she believes, and said he found the webinar, at which she spoke, helpful.

“There is some evidence that for carers and loved ones, the level of anxiety can be higher and last longer than for the patient themselves,” says Donohoe. If cancer survivors and loved ones can acknowledge their fears and adopt ways to cope together, he adds, there can be real healing in that spirit of solidarity.

Dillon believes it is hard for people who have not been through cancer treatment to understand the legacy of anxiety. “You’re walking around, so tight and tense. You don’t mean to be making life miserable for everybody else.” She wonders how her husband, Robert, used to put up with her.

Soon after finishing chemotherapy, she remembers “absolutely blowing a gasket” one day. “There were two lamps in my sittingroom and I f**ked them at him, God forgive me. I remember picking up the Hoover and throwing it across the room. He was looking at me and said ‘good for you – get that out of your system’.”

Nearly four years since the end of chemotherapy, Dillon is down to annual cancer check-ups. “For me I can say time is helping, but if I was to find anything tomorrow, in any funny shape or form, the first thing I will say to myself is, ‘it’s back’.”