Colo-rectal cancer after 15 years of UC

Hi davespa and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and tests to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi davespa and a warm welcome from me too. Looking at the NICE guidelines the regularity of colonoscopies seems to depend on the severity of the UC. The waiting for biopsy and scan results is very stressful but once you have a treatment plan in place then things will honestly feel a bit better.

Yes 2025 will be tough but keep posting and we’ll help and support you through this

Take care

Karen x

Hi I had UC for over 30 yrs and I presume because I sort of managed it and didnt csuse a fuss I didnt have any colonoscopies until I went to the gp with more symptoms,when I was diagnosed with bowel cancer.

If you click on my user name you can see how I got on.Feel free to ask anything.

All the best

Kath

Hi davespa just saying hi, hope your scans etc happen quickly and you get a plan. I felt so much better with a treatment plan. I was diagnosed Dec 27th so am with you in terms of 2025 not getting off to the best start!!! Best wishes.

Hi there - I am so sorry to hear your diagnosis and what you're going through. I'm 27, and have had ulcerative colitis for 16 years, similarly to you I thought it was well controlled and I've lived a normal life. A routine colonoscopy last May revealed that I had precancerous cells - low grade dysplasia which was invisible and unable to be removed. My consultant has told me that I have a 5% chance of getting cancer within 1 year, 25% chance within 5 years and 40% within 10 years. My options are more regular surveillance and colonoscopies once a year or total removal of the colon which would leave me with a stoma. Do you mind if I ask you, what would you have done if someone had told you your chances before you were diagnosed?

Thank you Anne! 

Thank you Karen!

I was more annoyed at my gastro appointments always getting postponed. I met with my UC consultant yesterday in the end, and she said i wouldn't normally have a colonoscopy for another year as it stands, just unfortunate timing. 

Biopsies taken, CT and MRI are done now too, i'll put a call into Amy my MacMillan nurse on Monday to see if there are any updates.

Dave 

Hi Kath,

Thank you for your response, i will take a look at your profile soon.

I'd been having a great year; gave up drinking March 24, gut behaviour was tip top, but there you go, strikes when you least expect it eh? 

I'm very happy it has all been jumped on so quickly though, looking forward to some treatment soon.

Best regards,

Dave 

Thank you Arial88! 

Biopsies taken, CT scan and MRI both done now, so hoping for a plan of attached soon! 

Hope your treatment is going well. 

Best regards,

Dave 

Hi LesAli,

Thank you for your response. I'm sorry to read the dysplasia cannot be removed; do you have to wait for it to become cancer before they'll treat it? 

I think I've always had in the back of my mind that my chances of developing cancer are higher because of the UC. 

I would rather an annual colonoscopy than go straight to stoma, I know a lot of folk get on well with stomas but I really would rather avoid it myself. 

Best wishes,

Dave