The First Week After a Cancer Diagnosis: A Gentle Companion

If you have found this in the days after a diagnosis, you are probably not reading properly. Almost everyone describes the same thing: the words arrived, and then a roaring sound, and then nothing else from that appointment stayed. This is written for that week. It is companion reading drawn from the accounts of people who have been through it. It is not medical advice, and it will not tell you what is going to happen to you, because nobody can yet.

You have not been told your prognosis, and you should not go looking for one

This is the single most repeated piece of advice people give, and the one they most wish somebody had given them on day one.

At the point of a first diagnosis, the picture is usually incomplete. Staging is often not finished. Biopsy results, receptor status, genetic markers and scan findings may still be outstanding, and every one of those changes the plan and the outlook substantially. What you have been told is that there is cancer. What has not yet been established is which cancer, how far it has gone, and what it responds to.

Into that gap, almost everyone searches. What they find are population survival statistics, and contributors describe those numbers doing enormous damage. Three things are worth knowing before you look. Published survival figures describe large groups of people, most of whom differ from you in age, stage, general health and tumour biology. Five-year survival figures necessarily reflect people treated five to ten years ago, using the treatments available then, which in several cancers have changed beyond recognition. And a median is not a prediction; half of the people in it did better.

Nearly every account contains a version of the same sentence: I read a statistic in the first week and it took months to get it out of my head.

What actually happens next

Knowing the shape of the process seems to reduce the fear more than anything else does.

In most systems your case will be reviewed by a multidisciplinary team — a meeting of surgeons, oncologists, radiologists, pathologists and specialist nurses who look at the imaging and pathology together and agree a recommended plan. This means you are not in the hands of the one doctor you happened to see. It also explains a delay that people find agonising: the wait between diagnosis and plan is often a wait for that meeting.

You will probably be assigned a specialist nurse. Contributors describe this person, more than any other, as the one who made the difference — the number you can actually ring, the person who translates, the one who tells you what is normal. If you have been given a name and a number, use it. People consistently describe under-using them for fear of being a nuisance.

More tests before treatment are usual rather than ominous. The staging scans that feel like an unbearable extra delay are what allow the treatment to be aimed correctly.

The appointments you cannot remember

The retention problem is close to universal, and there are practical answers people swear by.

Take somebody with you, whose only job is to write. Not to ask questions, not to be brave, just to write. People describe the difference between two accounts of the same appointment as the difference between having information and not.

Ask if you may record the conversation. Most clinicians agree readily. Contributors describe listening back a week later and hearing whole sections they had no memory of, including reassuring ones.

Write your questions down in advance and hand over the piece of paper if your voice goes. The questions people say mattered most were the plain ones: What exactly is it called? What stage, and what does that mean here? What is the aim of the treatment — to cure, to control, or to relieve symptoms? What are the options, including doing nothing yet? What happens if I wait two weeks to decide? Who do I ring at the weekend?

That question about the aim of treatment comes up repeatedly as the one that clarified everything, and the one people had been too frightened to ask directly.

Two things that are genuinely time-critical

Almost nothing needs deciding this week. Two things sometimes do.

Fertility. If there is any chance you might want children, this has to be raised before treatment begins, because some treatments affect fertility and preservation options largely close once treatment starts. This applies to men as well as women, and to people who are not currently thinking about children at all. It is frequently not raised by the clinical team, particularly with people over thirty-five or people who already have a child. Ask, this week, even if the answer is that you do not want to pursue it.

Second opinions. You are entitled to one, and asking for one is a normal part of oncology rather than an insult. It does not usually delay treatment meaningfully. If you want one, ask early rather than after the plan is underway.

Telling people is its own exhausting job

Contributors describe being blindsided by how much labour this is: the same conversation twenty times, each one requiring them to manage somebody else's shock while carrying their own.

What people describe as helping: appointing one person to be the information hub, and telling everyone else to ask them. Deciding in advance what you are and are not telling, and being allowed to change that later. Saying "I don't want to talk about it today" and not apologising for it. And being ready for the two responses that wound most — the person who immediately tells you about someone who died of it, and the person who disappears entirely. Both are described in almost every collection. Neither is about you.

Several contributors mention a short message sent to a group, once, as the thing that saved them from the worst of it.

The waiting is the hardest part, and it is not a sign of neglect

The days between diagnosis and plan are described more painfully than treatment itself in a great many accounts. There is nothing to do, nothing to fight, and no information.

People describe getting through it in small, unglamorous ways: keeping the ordinary structure of the day, going to work if work helps, not if it does not, walking, sleeping badly and accepting that, and putting a boundary around the searching — one specific question, from one reputable source, at one time of day, rather than an open-ended night.

Reputable general information exists from national cancer charities and cancer centres, and their free support lines are staffed by specialist nurses who will talk to you about exactly this. In the UK, Macmillan Cancer Support and Cancer Research UK both run information lines of this kind; most countries have an equivalent. Contributors describe ringing one of these as far more useful than three hours of searching.

The practical things nobody mentions

Money surfaces fast and embarrassingly. Travel to appointments, parking, time off, reduced income. Financial support, grants and benefits exist and are widely under-claimed; the specialist nurse or the hospital's support service can point you at them. People describe being astonished that nobody told them.

Work is a decision you do not have to make immediately. Many people describe telling their employer only the minimum at first, and revising it later once they knew the plan.

And distress in this period is expected, not a weakness. If you find you cannot function, or you are having thoughts of harming yourself, please contact your GP, your cancer team or a crisis line rather than waiting it out. Support is part of cancer care, not an add-on to it.

What people say they wish they had known in week one

• That the picture was incomplete, and the statistics they found did not describe them.
• That a team, not one doctor, would decide the plan — and that the wait was often for that meeting.
• That the specialist nurse was the most useful person in the building.
• That taking somebody to write, and recording appointments, changes everything.
• That fertility has to be raised before treatment starts.
• That asking the aim of treatment out loud clarified more than anything else.
• That almost nothing had to be decided that week.

Reading the accounts in full

The thing people describe helping most, once the first days pass, is reading somebody else's account of the same road. Our Cancer Journeys shelf gathers fifty first-person accounts in each volume, one cancer or one part of the process per book — Pink Warriors: Breast Cancer Survival Stories, Breathing Again: Lung Cancer Survivor Stories, Man to Man: Prostate Cancer Stories, Gutsy Survivors: Colon Cancer Recovery Stories. For the treatment itself, Chemo Courage: Stories from the Infusion Chair and Rays of Hope: Radiation Therapy Stories, and for the strange, under-described period afterwards, After the All-Clear: Cancer Survivorship Stories.

Every volume includes a section given over to the accounts where things did not go well. We think a collection in which everyone survives would be a cruel thing to hand to somebody in their first week.

Sources and further reading

• Macmillan Cancer Support and Cancer Research UK, both of which run free information lines staffed by specialist nurses, and publish plain-language information on staging, treatment and financial support.
• Your specialist nurse and your multidisciplinary team, whose information about your specific diagnosis overrides anything written here.

Healing Stories Network publishes anthologies of first-person patient testimony. This article describes what people report experiencing. It is companion reading and is not medical advice, diagnosis, treatment or a prognosis. If you are struggling to cope, please speak to your GP, your cancer team, or a crisis support line. Read about who writes and checks our articles.