Follow-up colonoscopy after colon cancer delay

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I was diagnosed with colon cancer in March 2022 and had surgery to remove the tumour. That was very successful and there were no signs of cancer in the margins or in the 22 lymph nodes that they removed. I did not have to have chemo or radiation treatment (phew). 

15 months after (June 2023 specifically), I had a follow up colonoscopy performed by the colorectal surgeon. She found a number of polyps some of which were inflamed. She removed them but mentioned that she did not expect them to have grown so quickly and that she wanted me to have a follow up in another 12 months. 

This all happened in the USA and I have since moved back to the UK.As soon as I returned I started the process of trying to get a follow up booked including getting a letter from the surgeon to say that she felt it was advisable. 

I am in Scotland and the waiting list is such that it will be late this year/early next year before they will schedule the colonoscopy. My GP has appealed and I have called them to no avail. It is on my mind a lot that I am sitting here growing more cancer when a routine inspection could prevent that. 

Does anyone have advice wrt to how to expedite this? Should I go private, join BUPA, picket outside the hospital, etc.? :-) It will be 18 months rather than 12 by the time I get the procedure and when I spoke with the surgeon, she did not think that was a good idea.

Thanks in advance everyone! 

  • Hi ,

    Thanks for posting your question to our Ask an Information and Support Adviser forum. My name is Matthew, and I work as part of the Online Community Team. We're the team who work on supporting our Online Community to make sure it stays safe and working well.

    This is just a quick message to let you know that I have moved your question over to our Ask a Nurse forum. It’s the best place to ask any questions about cancer testing, treatment, or navigating the health care system, as our dedicated Cancer Information Nurse Specialists provide the replies. A member of their team will aim to respond to your question within the next 1 to 3 working days.

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  • Hi Pemple

    Welcome to the online community.                                 

    I hope you’re finding it helpful to share your experience with us. You may be interested in joining our bowel cancer forum.

    I am glad to hear of your successful surgery for colon cancer and that you have made a good recovery. However, I can understand your concerns about getting the follow-up that your doctor in the US has recommended.

    I am unsure from the information in your post whether you have been referred by your GP to the colorectal team at your local hospital, you could ask if this would be appropriate in your situation and then would give you a clear idea on the follow-up that would be offered in your situation. NICE guidelines recommend follow up for 3 years, you can find more information about follow up on Bowel Cancer UK website.

    You may also find it helpful to contact the Patient Advice and Support Service (PASS) who can help you raise concerns about your NHS treatment.

    If you have any new symptoms you should see your GP so that they are able to make an assessment and any necessary referrals.

    If you decide the right route for you is private healthcare, you may wish to look at The Private Healthcare Information Network (PHIN) where you can find information about private consultants and hospitals.

    I hope this information has been useful, please contact us whenever we can help. 

    Take care.  

     

    Kathryn

     

    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: KR/Lrob

  • Thank you so much for this, sorry I have been slow to respond. 

    I have been referred to the local hospital and I am in the queue but they are saying that it will be next year before I am seen. Ordinarily, this might be the standard wait in the UK but as the surgeon in the US found worrying polyps after just 15 months, it feels like waiting longer than that would not be a good idea. 

    Do you think that PASS or the bowel cancer site might be able to either advise and/or put my mind at rest that waiting another 6 months will not put me in danger?

    I will look at the PHIN for sure. 

    Thanks again!

  • Hi Pemble,

    Thank you for getting back in touch with us again. I’m Lorna one of the cancer information nurse specialists on the support line.

    It can be a worrying time waiting for tests and investigations to be completed. I’m glad to hear you found Kathryn’s’ advice and support helpful.

    If you are still worried you should get back in touch with your GP. They will be able to assess you, and are responsible for making urgent referrals if needed. At the very least they should also be able to reassure you and put your mind at rest. They have access to your medical notes and will be able to let you know what a 6 month wait will mean for you, everyone’s situation is different.

    If you are still unhappy about the care you have received you can contact the NHS in Scotland for further advice and support.

    I hope this information is helpful. Please feel free to get back in touch if you want more information or support.

    Best wishes,

    Lorna

    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: LB/LA

    Lorna-Macmillan (Cancer Information Nurse Specialist)