Colonography

Hi wombles ,

My name is Amy and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line. Thanks for taking the time to post your question. I appreciate your hesitation going for colonography given the health anxiety you describe and the fact your colonoscopies have all been clear.

I’ve been unable to find clear guidance on why a Colonography would be offered as routine follow-up at this point for you John. This test is usually offered when a colonoscopy has been unsuccessful, and they have been unable to identify the intended part of the bowel.

It would be worth getting back in touch with your colorectal specialist nurse to explore all the pros and cons of having vs. not having this done. You can also discuss the health anxieties you now have.

Knowing more about what is involved in a Colonography could help with your decision. Our questions to ask and making treatment decisions may also help.

Some people find having ongoing follow-up and tests reassuring whilst others feel it causes greater anxiety. It’s important to come to a decision that feels right for you and that your cancer team feel is reasonable too.

We often find we can help more by exploring these questions over the phone. If this is something you think would help, then please don’t hesitate to get in touch via our support line on 0808 808 0000. We are available 7 days a week, 8am-8pm.

I hope this helps.

Best wishes, 

Amy C, Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref: AC/LA

Thank you Amy for your prompt reply. I should have mentioned that I live in New Zealand! As far as I can find out, I’m not eligible for any more follow up procedures as I’m now 77. My oncology nurse discharged me in January 2019 with a ‘Survivor’s Badge’ and in her report she ‘advised me that I could discuss with my Doctor the option of a private CTC in January 2023 if I wish to.’ So it’s not a recommendation. As I said in my letter to you, I don’t really wish to. It seems merely for peace of mind, but if the general opinion is that any polyps would be unlikely, then I’ll probably not go ahead, or at least postpone it for another year. Maybe 2024 which will be five years since my discharge?

Thank you again. I have been a Macmillan member for some time and have found it very informative. 
john. 

Hi wombles

Thanks for getting back in touch with us. My name is Ellen and I’m one of Amy’s colleagues on the Macmillan Support Line. I’m encouraged to read that you’ve been a member of our Online Community for some time and find it helpful.  

It’s understandable why don’t really wish to have a colonography and that you would want to query postponing for another year.

As Amy has mentioned it’s important that you come to a decision that is right for you and one that your cancer team feel is reasonable for you. Although it’s great news that you’ve been discharged and given your “Survivor’s Badge” it can still help if you’re able to talk to your nurse again before deciding. They may be able to go through the pros and cons in more detail with you.

Whilst most bowel polyps do not turn into cancer, there is a chance that some types, if not removed can develop into a cancer. It’s estimated this can take 10 years and more for this to happen.  

It’s also important to be aware of any new symptoms and get checked out.  I know that you live in New Zealand but this information from Bowel Cancer UK about living with and beyond bowel cancer can be helpful to read.

Best wishes and take care

Ellen-M

Cancer Information Nurse Specialist

Ref; EMcp/LM

I’ve almost decided to put it off until Jan 2024. I contacted my colorectal nurse and she summed up by simply saying that I could proceed if I wanted to or not if I don’t want to. She has never recommended that I go ahead. My BM’s have remained ‘variable’ since surgery 9 years + ago and having my gall bladder out seems to have made them more yellowish. She also agreed that Jan 2024 was a good plan.’ We shall see …. 

Thanks for your reply. I'm still dithering. I wish it wasn’t ‘up to me.’ If I was told I should go ahead I would, hopefully at the public hospital for no cost. I’ll talk to someone again next week when I have a routine appt. 

I had a dream about having a colonography! Not quite a nightmare. It made me realise that it’s becoming an obsession, so have at last booked an appt to have it done. Waiting to be advised of the date. Such fun!