Follow up after treatment for bowel cancer
After treatment for bowel (colorectal) cancer, you have regular check ups at the hospital. You also have tests including blood tests, colonoscopies and scans. Over time, these appointments become less frequent.
Why you have follow up appointments
You usually have follow up appointments to check how you are and see whether you have any problems or worries. The appointments also give you the chance to raise any concerns you have about your progress.
How often you have appointments
How often you see your specialist depends on:
- how you are feeling
- the type of treatment you have had
- if you have certain
gene 
changes, for example if you have Lynch syndrome
Ask your doctor or specialist nurse how often your follow up appointments are likely to be.
Metastatic or advanced bowel cancer
Metastatic bowel cancer is cancer that began in the bowel and has spread to another part of the body. You might see the doctor more often if you have metastatic bowel cancer. This depends on your symptoms and what treatment you are having.
What happens at your appointment
Your doctor or nurse examines you at each appointment. They ask how you are feeling, whether you have had any symptoms or side effects, and if you are worried about anything. You might also have tests at some visits.
Tests might include:
-
blood tests
-
colonoscopy
-
CT scan
Life after cancer and coping with follow up appointments
In this video Paul shares his story of life after bowel cancer. He and his friend from rugby, Dave, talk about what it was like going to appointments, going back to work once treatment had finished and how rugby helped him through.
The video is about 3 minutes long.
Paul: There’s plenty to look forward to life after cancer. Your life starts again it’s a reboot you’ve been given a second chance.
A rugby friendship is a bond for life. When I was going through treatment for bowel cancer Dave would be there for me he’d come to the occasional scan. In a moment of crisis Dave was there.
That final appointment is a scary place to be beforehand. You’ve had a life threatening disease, and to be told it’s no longer there.
It’s just an unbelievable release of tension. Just incredible.
Dave: I remember saying something along the lines of you should go and celebrate and you kind of said you didn’t feel like celebrating because you still felt even at that point that it wasn’t real.
Paul: Yeah very possibly. Maybe it’s that guilt setting in that throws you back down again that I’ve survived and so many people haven’t survived.
Or maybe it’s the thought that I’ve had it once it’s going to come back. I’ve got the all clear now but what next. That’s something to be aware of.
The phased return to work was something that was suggested to me by work actually saying that rather than come back full time build it up over a few weeks just because you’ve not been in that environment for so long.
Dave: You were pretty nervous and anxious about it which is understandable
Paul: It was just a tiring experience.
Dave: Physical and mental tiredness.
Paul: Yeah just dealing with people. But that just gradually disappears and you suddenly become unaware of it and you’re just back to the normal work tiredness that you get.
One of the side effects that I have from the drugs is this horrible pins and needles effect in the ends of my fingers. In cold weather I can still feel the neuropathy. But if this is all I have to put up with now following the cancer then I’ll take that.
Dave: I can remember being at Twickenham with him at some winter game a couple of years ago and he was holding his pint pot moaning about how cold his hands were.
Paul: In terms of getting back to normal, new normal, having the rugby there, having something outside of your own environment gave me a focus each week to get back to it.
It’s a new you it’s a new world you’ve got a second chance, just grab it. And if you’ve got people to fight for they’re the ones you’ve got to fight for.
I hope you don't have to go through this buddy.
Dave: Yeah I know. I understand.
Patient initiated follow up (PIFU)
Patient initiated follow up (PIFU) is an option for some people after treatment for bowel cancer.
Patient initiated follow up (PIFU) is a way of running check ups. This system leaves it to you to take the lead in arranging to see your doctor or specialist nurse. You might also hear this called open access follow up (OAFU).
When you first finish treatment, your hospital arranges your appointments. But once your doctors are happy with your progress you can arrange them yourself. You can do this as often as you feel you need to.
You might want to make an appointment if you:
-
have noticed a change in your body that worries you
-
feel it is time you had a check up, even though you don't have any particular worries
In some situations, your specialist will ask you to book in for a particular test every so often.
This system means you can organise appointments to suit your own health needs. It also means that clinics aren’t full of people who might not need to see their doctor. This helps the hospital to keep waiting times short, so you can get an appointment quickly when you need one.
Between appointments
Contact your doctor or specialist nurse if you have any concerns between appointments. You should also contact them if you notice any new symptoms. You don’t have to wait until your next visit.
Many people find their check ups quite worrying. A hospital appointment can bring back any anxiety you had about your cancer.
It can help to tell someone close to you how you’re feeling. Sharing your worries can mean they don’t seem so overwhelming. Many people find it helpful to have counselling during or after cancer treatment.
You can also find people to share experiences with by using our online forum, CancerChat.
