You are finished, and then they call you back

Sixteen years, and nobody to call

I will say this plainly once and then move on, because it is a fact and not a complaint.

In sixteen years of this illness, no family member ever came to take care of me. One or two friends visited the hospital, once or twice. I have never been in psychological treatment. There was no support group, no counsellor, nobody whose job it was to ask how I was doing.

So when people write about the loneliness that arrives after treatment ends, I recognise the word and not the shape. Nothing arrived. It was the same room before and after.

And something grows in a person in that situation, which I did not choose and cannot entirely recommend. I developed a kind of state of no fear. Not courage. Something closer to the way you stop flinching at a noise you have heard every night for years.

The only day I was really afraid

There was one.

I had just had surgery to repair the damage another doctor had done to my body in this country. I had spent a year at my computer, programming and crying, because of what had been left of me and because it hurt all the time.

And in that same place there was a lump. They told me it was a tumour. It kept growing until it was five centimetres.

The day I was told, I was with my sister. It was supposed to be a beautiful day.

That is the only day in sixteen years that I have been genuinely afraid of cancer. Everything since has been exhaustion, anger, pain and paperwork. The fear itself only came once.

Finished, until the telephone rings

Nobody congratulated me. The people who congratulate you are mostly strangers, and somehow you believe them anyway, because they are saying the thing you want to hear.

Because every single time, I was sent home with the word finished.

And then, about a week later, the telephone. We forgot something. The margins were not clean. You need to go back to surgery.

So you start again. You take the word back, you take the congratulations back, and you begin the whole thing from the top.

There is a film where two people live the same day over and over, dying at the same point every time and waking up at the beginning. That is the closest thing I have found to describing it. Every loop ends the same way and then it starts again, and the part that dies each time is something inside you.

“Every loop ends the same way and then it starts again, and the part that dies each time is something inside you.”

It was never about the machine

People hear that somebody is afraid of scans and they picture claustrophobia. A narrow tube, a loud noise.

It is not the machine. It is lying inside it waiting, and then leaving and waiting again for a word that will tell you whether you are better or not. The machine takes twenty minutes. The other thing takes as long as it takes.

And it is not only scans. Some of us are followed by blood. A tube goes to a laboratory and somebody decides from it whether there are still traces of a tumour in your body. That is the same wait, and in some ways worse, because a picture is at least a picture, and a result that says cells in your blood sounds like a sentence being read out.

I am not the only one, and it has been counted

For years I thought this was a weakness particular to me. It is not.

A systematic review published in 2024 pulled together 22 studies covering 8,693 patients who had been through surgery meant to cure them. Across the studies that measured it, between 34 and 85 per cent reported anxiety around their follow-up appointments. In one breast cancer study it was 85 per cent.

And it identified the worst part, which is the part I would have told them. Not the test. The waiting between the test and the result was the most anxiety-provoking phase. The month before an appointment brought sleep problems, irritability, poor concentration and exhaustion. It lifted when the result came.

Eight thousand people. It is not your character. It is the situation.

What the guideline says, which almost nobody is told

Here is something that surprised me, and I read documents for a living.

For breast cancer follow-up after primary treatment, the American Society of Clinical Oncology updated its guideline in July 2026. For a patient with no symptoms it says this.

Routine bone scans, chest radiographs, liver ultrasounds, CT and PET are not recommended. The panel recorded 97 per cent agreement on not imaging asymptomatic patients. And the blood work, which matters here: complete blood counts, chemistry panels and the tumour markers CEA, CA 15-3 and CA 27.29 are discouraged in asymptomatic patients.

The reason is not money and it is not rationing. No evidence shows that those tests catch a recurrence earlier than symptoms would, or that catching it that way makes you live longer.

Read it twice, because I had to. If you have decided not to have a scan, you may not be refusing care. You may be doing what the guideline says. And if nobody is scanning you, that is not necessarily neglect. I wish somebody had told me that instead of leaving me to assume I had been dropped.

One limit I will not blur. That is the breast cancer guideline. Surveillance differs by cancer, and for some there is a real schedule that genuinely changes outcomes. Ask what yours says, by name. It is written down and you are allowed to read it.

About the blood test that finds cells

There is a newer test that looks for fragments of tumour DNA circulating in your blood. ctDNA. It is real science, and it is the thing people mean when they say they can find microscopic traces of your tumour.

The same 2026 guideline says ctDNA cannot be recommended in any specific context for recurrence monitoring outside a clinical trial. It detects what it claims to detect. What does not exist yet is proof that acting on the result improves anything. Trials are running now.

I am not telling you to refuse one. I am telling you what it is, so that when somebody offers you an expensive private test and implies it will save your life, you can ask them for the trial that shows it does.

What I actually do now, and why

I have not had a scan since 12 June 2025.

That is a decision with rules, and I want the rules written down, because when people hear that someone is not being scanned they imagine a person hiding from the truth.

What I do. Ultrasound, the least invasive thing there is, on the area where I had the metastasis. Not the whole body. The place where something actually happened.

What would change it tomorrow. Anything I can feel. Any change in my body. Anything in my blood work that spikes or moves in a way that concerns me. Any of those and I go, without arguing with myself about it.

That is the same shape the guideline describes. Watch the person, not the calendar, and image when there is a reason.

And the honest reason, which is mine rather than clinical. Sitting in that waiting room, and then waiting for the result, even when it comes in a few hours, hands me back the cortisol of two years. Two years I have spent without that in my body. A few hours of it costs me far more than a few hours.

I am not pretending that is a medical argument. It is a person who has been ill for sixteen years deciding what she can carry, having understood what the evidence does and does not say, and having a list of things that would change her mind immediately.

I am not telling you to do this. Your cancer is not my cancer. What I am telling you is that this is a conversation you are allowed to have out loud, with reasons on both sides, instead of either submitting silently or disappearing quietly. A plan with triggers is not avoidance, and the difference is worth saying because nobody says it.

The thing I stopped doing, and I am not sure it is healthy

Somewhere along the way I stopped caring whether I have something or not.

I am putting that in because it is true, not because I recommend it. The best periods of my life since I was diagnosed were the ones when I did not know I had cancer, and in those periods I was healthier than I have ever been. Not because ignorance cured anything. Because I was not spending my days being a patient.

There is a reason this post does not end with a tidy instruction. I have not solved it. I have only stopped letting it have every day.

What I will not tell you

I will not tell you to stay positive. People said that to me and it turned my fear into a second illness I was also failing to manage.

I will not tell you that a good attitude changes a result. It does not, and anybody selling you that is usually selling you something else too.

And I will not tell you the fear goes away. For me it mostly did, and the way it went was not healthy, and I would rather be honest about that than hand you a method.

What is worth asking for

Ask, before you leave, how and when you will be told. A date for the result, not just a date for the test. Most of the dread lives in not knowing when the not knowing ends.

Ask for the report itself, not only the verdict. You are entitled to it, and reading it is easier than imagining it. I have written about how to ask and what it costs.

Ask what your guideline says for your cancer, by name. If the answer is that imaging is not recommended without symptoms, that is an answer. It is a better one than silence.

And learn two phrases. No evidence of disease means nothing visible, on this test, today. It is the most honest sentence in the whole system. And that is scarring, not progression, which once saved me a week of terror, because treated tissue never goes back to looking untouched and a radiologist describing it is not telling you it has returned.

Why this is what I am building

Almost everything above is an information problem wearing the costume of an emotional one. Not being able to read your own reports. Not knowing when the answer is coming. Not knowing which words are serious. Not knowing that the thing you were not offered was never recommended in the first place.

I built My NEDPath because I spent sixteen years on the wrong side of that, with nobody to call, and at some point it became unbearable to keep being frightened by a document I was perfectly capable of understanding if somebody had simply translated it.

Sources

Khatri R, Quinn PL, Wells-Di Gregorio S, et al. Surveillance-Associated Anxiety After Curative-Intent Cancer Surgery: A Systematic Review. Annals of Surgical Oncology, 2024;32(1):47 to 62. 22 studies, 8,693 patients. Between 34 and 85 per cent reported anxiety around follow-up, and the waiting between test and result was the most anxiety-provoking phase.

Nahleh Z, Alfano CM, Somerfield MR, et al. Breast Cancer Follow-Up and Management After Primary Treatment, American Society of Clinical Oncology guideline update. Journal of Clinical Oncology, 16 July 2026. Routine imaging not recommended in asymptomatic patients, with 97 per cent panel agreement. CEA, CA 15-3 and CA 27.29 discouraged in asymptomatic patients. ctDNA not recommended for recurrence monitoring outside a clinical trial.