I beat cancer twice: dealing with the fear of cancer recurrence after treatment

For a long time, my life was measured in cycles: rounds of chemo, appointments, scans, and side effects. The day I was told I was in remission is the day a new war began — the struggle with the fear of cancer recurrence after treatment. I lived wholly in the ‘during’ of breast cancer. I took a certain pride in it — a quiet, steely resolve to endure whatever was thrown at me. And I did. Actually, that's a lie. I was mostly hysterical and a difficult patient because I was terrified, but I crossed the finish line. I heard the words everyone wants to hear: "No evidence of disease."

But here is the truth that people don’t tell you: the day you are told you are ‘NED’ (because no consultant ever wants to commit to using the word ‘cured’) is the day a new, quieter war begins. The battle against fear. And it is an anxiety that can be all-consuming.

My first breast cancer was an aggressive Stage 3. I wasn’t surprised. Both my parents died young and, I know, it’s only down to the marvels of medical research that I’ve somehow managed to live much longer than they did. If I’m unlucky, the next stop is incurable Stage 4. I’m hyper mindful of that, and do everything I can to lessen my chances of being faced with a ‘chemo till you die’ prognosis. 

I exercise, watch what I eat and keep my body properly hydrated. I very rarely drink alcohol and I don’t smoke (I used to). Deep down, though, I do wonder if the damage has already been done; the real issue being something as basic and raw as bad genes or the result of my ‘before cancer’ lifestyle. Can I really stop what may be heading my way? I honestly don’t think so.

In the meantime, I’m also dealing with on-off lymphedema (both sides), issues with my feet caused by chemo and an all-consuming fascination with beauty that runs parallel and sometimes intertwines with terror. I want to look ‘normal’ even though I don’t feel ‘normal’. I’ll buy into whatever the latest makeup fad is to try and regain part of me that I lost. It’s all about revisiting the ‘before’ by trying to re-work the ‘after’. 

There is a specific kind of fatigue that comes from performing 'Recovery' for the benefit of a mirror and others. When friends ask: “How are you?” They want to hear: “Great!” They want to believe the story has a happy ending. So, I put on the over-priced tinted lip gloss and the 'healthy glow' makeup, and I smile. I play the part of the victor because it’s easier than explaining that I’m actually a refugee from a war that hasn't quite ended.

Then there's the horror of someone reacting to another person's cancer diagnosis (most often not to their face) with: "Oh, well, that's life." Or: "They will be fine." Would they, in all truthfulness, be saying that if they or someone very close to them had been diagnosed with cancer? I doubt it.

Most people reading this who haven’t had cancer will not be able to compute the utter enormity of it all. It’s life-changing, physically and psychologically.

The shadow of the 'after'

Many people see cancer as a binary — you’re sick, or you’re better. But for those of us who have lived it, life is permanently split, as you may have already gathered, into Before and After. You are never the same desperately optimistic person who walked into that first biopsy.

While the world expects you to celebrate the end of treatment and ‘get back to normal’, you are often left standing in the ruins of your old life, looking at a body that feels like a betrayal and a future that feels like one, big question mark. The medical team moves on to the next patient, the regular check-ups stop and, suddenly, you are alone with your thoughts — and a number to ring if you experience certain symptoms for longer than two weeks. 

That is when the shadow moves in. And it stays with you.

I call it ‘medical ghosting’. During treatment, my calendar was a crowded mess of red-letter days — scans, blood tests, 'chemo days’. Then, suddenly, it was empty. It’s like being in a high-speed car chase for over a year and then being told to just 'park up and turn the engine off’. The silence of a phone that no longer rings with appointment reminders can feel less like peace and more like being abandoned in a punctured life raft. It’s terrifying.

For some people, myself included, treatment doesn’t actually end for many, many years, even though the appointments do. After my second cancer, Stage 1 lobular, I was prescribed an innocuous-looking pill that I was told to take every day for five years to reduce the chances of it coming back. Great, except it heaps more side effects (and they are quite hideous) on an already ravaged body. And, in my case (according to the NHS Predict tool), it will only lower my recurrence risk by 0.76 per cent. Yep, less than one per cent. Years more misery for so little potential benefit. You have to wonder if it’s worth it — especially in the wake of a previous Stage 3 diagnosis for an entirely different (HER2+) cancer. I feel doomed.

Understanding the fear of cancer recurrence (FCR)

The fear of cancer recurrence (FCR) isn't just a passing worry; it is a weight. Every headache is a potential lesion on the brain. Every twinge in a rib is a sign that it’s back in the bones. It is a fear that never truly goes away.

Before cancer, a sore back meant I’d been sitting at my desk for too long. Now, even the slightest hint of back pain triggers a panic attack. I find myself 'checking' my body in the shower — not for age spots, but for rashes along scar lines and any sign of the enemy's return. It’s a hyper-vigilance that is exhausting; you are essentially living in a body that you no longer trust.

When I was diagnosed with the first breast cancer, the statistics at the time for that particular type (inflammatory) suggested I had less than 50 per cent chance of surviving five years. Those statistics have, thankfully, been updated. It gets scarier the further you look ahead. My chances of being alive ten years after diagnosis were dire — less than 30 per cent. So, with a very high risk of going onto Stage 4 and dying, you can see where my fear comes from.

The reality of the ‘after’

• 50% of breast cancer survivors experience moderate to high fear of recurrence.

• For 20-50%, this fear is ‘clinically significant’ meaning it profoundly disrupts their ability to enjoy life, sleep, or make future plans.

• This fear often peaks after treatment ends, because the safety net of active medical intervention is gone.

  
  

The psychological toll

We talk about ‘fighting’ cancer, but we rarely talk about the PTSD that follows the battle. There is a deep, heavy exhaustion that comes from being ‘strong’ for so long. For some, this transition is more than just stressful — it is devastating.

Studies have shown that women who have survived breast cancer face a significantly higher risk of psychological distress than the general population. In some cases, the ‘excess risk’ of suicide remains elevated for decades after diagnosis. We aren't just recovering from a disease; we are recovering from a trauma that threatened our very existence. And may threaten it again in the future.

Everybody deals with the fear of cancer recurrence after treatment differently. Some people get angry or cry. Others mask it. The only way I could cope with worry during treatment was to learn everything I could about the specific cancer I was fighting. I made sure I had support, right down to sourcing a ‘second opinion’, should I ever need one. Significantly, I spoke out when I didn’t think something was right. I moaned about a lot of things too. And I spent hours learning how to draw on eyebrows and give my skin a fake healthy glow. That’s how I coped.

When the treatment ended, so too did my coping mechanism.

Why it’s hard to move on from cancer

It’s hard because you are mourning. You are mourning the person who didn't have to worry about the ‘what ifs’. You are mourning a body that you used to trust implicitly.

Often, it’s the small things that get us. The initial loss of hair from chemotherapy. The physical mutilation. Lack of energy. Pressure, real duress, to ‘get back to normal’, i.e. work, activity levels.

For some, a reminder of what could be to come is an unwelcome intrusion into the ‘moving forward’ stage. ‘Cancer’ is everywhere. Social media, advertising, in the news… It’s never ending. No wonder why the fear of cancer recurrence after treatment is so prevalent. I don't want to see another vlog of a cancer patient's journey pop up on my Facebook feed. There's so many of them and, nine times out of ten, the 'patient' projects a healthy, beautiful facade. I know the effort it takes to look like that during treatment and I also know the reality of what life is like for them once the camera stops rolling. I don't need these uninvited reminders.

Losing the ability to be spontaneous can hit hard. Everything has to be planned during or immediately after cancer treatment. You can’t just jump up and say: “Let’s go to the beach today!” You’ve got to have the energy and feel well enough to undertake an activity. You also have to consider whether or not something is safe to do in the first place, because depleted immune systems pose significant risks.

I remember the first few times I left the house after 16 months of treatment during the pandemic. My feet were so sore from walking that I could barely move. I could see people drive past me in cars and slow down to have a double-take at the sight of me hobbling. And, yes, more than one stopped to ask if either I was all right or needed a lift home. I also remember insisting that I was okay, wanting to push forward because I knew I had to persevere to rebuild my strength. 

If you met me, you’d never know that I am burdened by the fear of cancer recurrence. I smile. I laugh. And, of course, I’m always dolled up to the nines (I am not the woman in the photos, by the way). I certainly don’t look weighed down with anxiety or depression. But, in quiet moments, behind closed doors, I am accompanied by that unwelcome, foreboding shadow. It envelops me first-thing every morning and during the still hours of the night when, thanks to that small pill, I toss and turn for literally hours.

It’s easy for others to accuse cancer survivors of living in a permanent state of (what they may see as) self-pity, but they will only ever understand if, God forbid, they one day have to face the same journey.

It takes mental strength to endure toxic treatments, because they are painful and exhausting. They are so powerful, they have the potential to kill you. Imagine that, kill or cure. One of my treatments included a compound made from yew tree extract and solvents. Another was ‘infused’ with platinum. 

It demands dogged persistence to recover from the physical side effects. I’m not asking for a medal, but a little kindness and understanding would definitely help. I don’t want to feel pressured into anything. I’m never going to be the person I was ‘before’, not 100 per cent, but you can bet your bottom dollar I’m going to do everything I can to get as close as possible. Importantly, and I can't believe I've written so many words and failed to mention the most critical point, I am incredibly grateful to be alive! Makes me wonder if 'moaning' is my fallback for coping.

If you are feeling consumed by the ‘dark shadow’ right now, please know that you aren't failing at being a survivor. You are reacting normally to an abnormal experience. There is no completely ‘getting back to normal’ — there is only learning to carry the shadow until the light gets a little brighter.

Moving Forward workshops are offered across the UK, some by specialist cancer charities. In my area, we have one taking place next month. I will be there.

If you are struggling

If the shadow feels too heavy to carry alone, please reach out. There is no shame in needing a hand to pull you through the ‘after’.

The Samaritans are available 24/7 for anyone who needs to talk.

• Call: 116 123

• Website: https://www.samaritans.org

Macmillan Cancer Support

• Call: 0808 808 00 00

• Website: https://www.macmillan.org.uk/