Follow-Up Care

Something shifts when treatment ends and the appointments start to thin out. During treatment, the system had its eye on you. Somebody was always checking. There was a rhythm to it — however frightening, however exhausting — and within that rhythm you were being watched. And then treatment finished, and the rhythm changed, and the watching became something different, and nobody quite explained what it had changed to or what you were supposed to do now.

That feeling of the safety net loosening — of the clinical attention that organised your life for months beginning, quietly, to withdraw — is one of the most consistently described experiences of the post-treatment period. It is not imagined. It is real. The system does step back when treatment ends. The question is what steps back in its place, and whether you have been given what you need to manage that transition safely.

The honest answer, for too many people, is that they haven't. A survey of NHS acute trusts found that the median number of aftercare sessions provided when treatment ends is two. Two sessions, each between thirty and sixty minutes. And the 2024 National Cancer Patient Experience Survey found that only 23.4 per cent of patients — fewer than one in four — had a Cancer Care Review with their GP. After treatment ended, only a third of patients who needed emotional support from community services could definitely access it.

This chapter is about navigating the gap between what you should get and what you may actually find when you reach for it. It will tell you what to ask for, who to call, and what to do when the system doesn't respond. But it will also say something that most resources don't say: that asking for help after cancer is genuinely hard, that not everyone can do it easily, and that if you are one of the people who finds it hardest, there are routes through that don't require you to do it alone.

If a symptom is severe, rapidly worsening, or your gut is telling you something is seriously wrong — do not wait for an appointment. Contact your CNS the same day. If they aren't reachable, contact your GP as urgent. If neither is reachable and your symptoms are severe, go to A&E or call 999. The risk of going when it turns out to be nothing is an inconvenient afternoon. The risk of not going is considerably more serious.

When asking is too hard

Most resources for cancer survivors assume that you can make the call. That you have the number, the confidence, the words, and enough spare energy to push back if the first response doesn't feel adequate.

A lot of people don't have all of those things at once. If you are frightened about what a symptom might mean, making the call is harder. If you live rurally and the clinic is forty minutes away on a good day with a car, the whole system feels more remote. If post-treatment cognitive effects are making it difficult to hold a conversation together. If you have spent your whole life not challenging professionals. If anxiety is running so high that picking up the phone to discuss a worry that might become a worse worry feels impossible. If you are alone, at 3am, and there is nobody to say out loud what you are carrying.

None of that means you don't care about your health. It means you are navigating something hard in conditions that were not designed with you in mind.

Your GP can be a significant ally in ways that most people don't use. If you cannot get through to your CNS, if a follow-up appointment has been cancelled and not rescheduled, if a symptom has been assessed and you don't feel adequately heard — your GP can contact your consultant directly, chase appointments, make urgent referrals, and move things within the hospital system that you, as a patient, may not be able to move alone. Your GP has clinical standing with your oncology team that you do not. If the system isn't responding to you, it may respond to them.

Bring someone with you. To any appointment, GP, CNS or oncology. Someone who can listen, remember what was said, ask the questions you didn't manage to ask, or simply be the person who speaks when you can't.

Maggie's centres are worth knowing about. There are centres across the UK, usually in the grounds of a major cancer hospital. No referral, no appointment, you can walk in. They're staffed by cancer support specialists, psychologists and benefits advisers, and one of the most useful things they do is help you work out what to ask before you go back to your team.

Macmillan Buddies is a different thing and worth being clear about, because people expect more of it than it offers. You register, they match you with a trained volunteer, and you get a weekly phone call from the same person for eight weeks. It's company and someone who understands, rather than someone who comes to the hospital with you.

In England, PALS, the Patient Advice and Liaison Service, offers confidential advice, support and information, and can often resolve a concern informally without it becoming a complaint. You'll find it at your local hospital. It's worth asking them to chase an appointment that's gone missing or a message nobody has answered, and someone else can raise a concern on your behalf. How much they can shift varies a good deal from trust to trust, and they can't give you medical advice.

Outside England it goes by other names. Scotland has the Patient Advice and Support Service, delivered through Citizens Advice Scotland. Wales has Llais, an independent body with a free complaints advocacy team, alongside the NHS Wales complaints process called Putting Things Right. Northern Ireland has the Patient and Client Council. Same job, different door.

The Macmillan Support Line on 0808 808 00 00 is staffed by people who understand the NHS cancer pathway and who can help you understand what you should be receiving, how to articulate your concern, and what your options are. They can also send printed information to your home address if you have limited internet access. They are available from 8am to 8pm, seven days a week.

If getting to services is the barrier — no car, rural location, limited mobility — your GP can conduct follow-up reviews by phone or video call. You are entitled to ask for this. Some trusts offer video follow-up appointments. Your pharmacist, who you may see more often than your GP, can signpost local services and send a message to your GP if they think something needs following up.

What you were supposed to receive — and how to get it if you didn't

At the point where treatment ended, three things should have happened that form the foundation of everything that follows.

The first is a Holistic Needs Assessment. This is a structured conversation — usually with your Clinical Nurse Specialist — about your physical, practical, emotional, and social needs at that specific moment. Not your medical needs. All of them. Its purpose is to identify what support you actually need as you move into the follow-up period, and to make sure those needs are recorded somewhere rather than quietly disappearing into the gap. If you were never offered one, or if you aren't sure whether you had one, you can ask for it now. It's not too late. Those two words — holistic needs assessment — will be immediately understood by your CNS. Ask for one.

The second is a Treatment Summary. A written document from your clinical team, sent to both you and your GP, covering what treatment you received, what the potential late and long-term side effects are, what symptoms should prompt you to contact the team urgently, who your main point of contact is, and what your follow-up pathway looks like. Your GP is supposed to have received their copy so that when you walk in with a new symptom, they already understand your specific history. In practice the communication between hospital and GP is inconsistently good across the country, and GPs sometimes don't have what they should have. If you don't have a treatment summary, or if you're not sure whether your GP received theirs, ask your CNS. Those words — treatment summary — will be recognised.

The third is a Cancer Care Review with your GP. A specific conversation, separate from a routine appointment, focused on your cancer journey, how you are managing, what your follow-up looks like, and what support might be available to you. Only 23.4 per cent of people in the 2024 national survey had one. Most didn't know it existed. You can request it directly by calling your GP surgery and asking for a Cancer Care Review appointment. Use those exact words. It is a coded consultation that your GP can claim through their quality framework, which means most practices will recognise the phrase and know what to do with it. If you have never had one, ask for one this week. It is one of the most useful conversations you can have, and it is yours to ask for.

I'd like to book a Cancer Care Review, please.

What to watch for — and what to say when you see it

The list of symptoms specific to your cancer type that your clinical team wants you to watch for should be in your treatment summary. If it isn't, or if you don't have one, ask your CNS for it in writing. This is not a small request. It is the foundation on which self-managed follow-up is supposed to rest.

The general principle across cancer types: anything new, persistent, or worsening that you can't explain and that has been present for two weeks or more deserves to be discussed with your GP or your clinical team. Not every twinge. Not every bad morning. But something consistent, something not improving, something that your gut is telling you is different from ordinary recovery.

The symptoms that warrant same-day contact — not tomorrow, today — are the specific ones your team will have listed, alongside these broader flags that apply across most cancer types: significant unexplained weight loss over a short period; a new lump that wasn't there before; blood in urine, stool, or anything coughed up; new and progressive difficulty swallowing; severe headaches that are genuinely different from any you've had before; persistent unexplained pain in a new location; anything making you feel genuinely unwell in a sustained way.

When you call your GP about a concern, the framing that works best is: I have a history of [your cancer type]. I am [how long] post-treatment. I have noticed [the specific symptom]. It's been present for [how long] and it is [better, worse, or unchanged]. I'm concerned about recurrence and I'd like your view on whether this needs an urgent referral. That sequence gives your GP what they need. The two-week wait urgent suspected cancer referral pathway applies to suspected recurrence as well as new diagnoses. You are entitled to ask whether it applies to your symptom.

I have a history of bowel cancer, I finished treatment eight months ago, and I've had this pain for three weeks and it's getting worse. Could it need an urgent referral?

The transition nobody prepared you for

There is a specific anxiety that arrives in the weeks after treatment ends, and it is worth naming it precisely because it tends to get misread — by the people around you, and sometimes by you.

It feels like fear. And there is fear in it. But underneath the fear is something more specific: the absence of the clinical attention that was, for all its difficulty, a form of being held. Every appointment was a checkpoint. Every blood test result was information. The system was, in its imperfect and overstretched way, watching. And now it isn't — or not in the same way — and your body, which has been through a significant medical experience and may still be producing symptoms you can't read, is now largely your responsibility to monitor.

That is a significant thing to ask of someone who has just been through cancer treatment. The fatigue. The cognitive effects. The anxiety about what every new sensation might mean. The fear of recurrence that Chapter 2 describes in detail. All of that is the backdrop against which you are now being asked to be, in the NHS's language, an empowered, self-managing patient.

The model has a name. It is called Patient-Initiated Follow-Up, or PIFU. It means that instead of coming in for routine scheduled appointments, you are given direct access to your clinical team and expected to contact them when something concerns you. The NHS is extending this model to all appropriate cancer pathways because the evidence shows that most recurrences are found by patients noticing something, not at routine clinic slots. There is genuine sense in that. There is also an honest concern that needs saying: PIFU works well for people who have been properly prepared, who have a reliable and genuinely accessible route back to their team, and who have the confidence and the practical resources to use it. It works less well for people who haven't, who don't, and who don't. And the NHS moved towards this model partly because it frees up outpatient appointments — which is a different motivation from what works best for patients.

If you are on a PIFU pathway and it is working for you — you know your red flags, you know who to call, the number is in your phone and you trust it — then good. The rest of this chapter gives you more detail on the same. If you are on a PIFU pathway and it feels like being cut loose without enough to hold onto, then you are not wrong. And this chapter is particularly for you.

What your follow-up looks like — the broad picture

Your specific follow-up depends on your cancer type, your treatment, and your trust. There is no single template. What you have been told by your clinical team about what comes next is the most important thing, and if you aren't sure what you've been told, that is the first conversation to have.

Whatever your cancer type: if you are not clear on when your next appointment or scan is, who is responsible for scheduling it, and who to call if something worries you before it arrives — those are the three things to find out. Write them down. Put the number in your phone.

If the follow-up you are receiving feels inadequate

If appointments are being missed or not rescheduled. If you've been moved to a self-managed pathway without being told what should bring you back. If you've been trying to reach your CNS for two weeks. If the support you were told about turned out not to exist in your area.

Name it specifically rather than generally. Not I feel abandoned — true as that is — but the specific thing that is not happening. That framing gives a specific person something to act on. Speak to your CNS first, then your GP, then PALS or its equivalent where you live, then the Macmillan Support Line, then a formal complaint if nothing else has worked. The NHS Constitution gives you the right to have a complaint responded to within defined timescales. Your right to complain does not affect the quality of your clinical care.

And if none of those steps feel manageable right now — if you're reading this at a low point and the list of things to do feels like more weight than you can carry — start with one call to Macmillan. Tell them what isn't happening. Let them help you work out what to do next.

What the research says about living well in this period

There is evidence — robust and consistent enough to be worth stating plainly — that the choices you make about how you live during the follow-up period affect long-term outcomes.

Physical activity is associated with reduced risk of recurrence in breast, colorectal, and prostate cancer, and with better quality of life across all cancer types. Not a specific programme or a specific intensity. Just more movement than you currently have, in whatever form is possible for your body right now. If fatigue or physical effects are making this difficult, your GP or CNS can refer you to an exercise programme specifically for cancer survivors. These exist in most areas and are usually free.

Weight management, diet, alcohol, and smoking all have an evidence base in the post-treatment period. Ask your clinical team whether any of these are specifically relevant to your cancer type and what support is locally available. You may be surprised what exists, and surprised how accessible it is.

What to do this week

This hasn't improved the way I expected. It's been a month and it's worse. I'd like it reassessed.

If going back still doesn't resolve the concern: ask your GP whether the symptom warrants an urgent referral under the two-week wait pathway. Contact PALS, or its equivalent where you live. Call Macmillan.

And if you genuinely cannot do any of this right now — if the anxiety is too high, the distance too far, the energy completely gone — tell one person what you have been noticing and how long you've been noticing it. Your GP. Your pharmacist. Someone in your household. Anyone. Let them be the one who takes the next step. You don't have to do this alone. You were not meant to do this alone. The fact that the system sometimes makes it feel that way is the system's failure, not yours.

Your health is worth the call. And if you cannot make the call, it is worth asking someone to make it for you.

• Your CNS contact number should be in your treatment summary or discharge paperwork — if not, call your hospital switchboard and ask for the cancer care team for your cancer type
• England — PALS (Patient Advice and Liaison Service): find via your hospital's website or nhs.uk — nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service
• Scotland — Patient Advice and Support Service (PASS), delivered through Citizens Advice Scotland — cas.org.uk/pass
• Wales — Llais (independent body, free complaints advocacy team) — llaiswales.org
• Northern Ireland — Patient and Client Council — patientclientcouncil.hscni.net
• Macmillan Support Line (free, 8am–8pm seven days, can post information to your home address): 0808 808 00 00
• Macmillan Buddies (trained volunteers, weekly phone call for eight weeks) — macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-buddies
• Maggie's Centres (drop-in, no referral, help working out what to ask) — maggies.org
• National Cancer Plan for England (February 2026) — gov.uk/government/publications/national-cancer-plan-for-england
• Cancer Research UK on follow-up after treatment — cancerresearchuk.org/about-cancer/treatment/finished-treatment/going-back-for-check-ups