Aftercare

FormerMember over 3 years ago

5 replies
120 subscribers
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Hi All, I was diagnosed last May after being admitted with suspected appendicitis, told the following day it was Bowel cancer and had a right hemicolectomy later that day. I had 19 lymph nodes removed 2 of which contained cancer and it was also in blood vessels, 8 rounds of Capox chemo and recently I’ve had a clear colonoscopy. Scan date 6/5 so scanxiety kicking in!! My aftercare I feel is poor, no more colonoscopies, scan at year 3 and that’s it apart from 6 monthly blood tests for 2 years and the annually up to year 5. Would like to hear from anyone else what aftercare you have been offered as they claim they are following guidelines???

PsI was T3N1M0, still not sure where the stage 3 comes from

Thanks to you all, Sue xc

Gemmary over 3 years ago

Hi, , that was my initial description, after the LAR (rectal cancer) it changed to T3N0 V1M0 hence chemo. Yes, there is a colonoscopy a yearish after diagnosis, if clear then 5 years. I have had a CT scan , just had the second, so 2yrs clear. I'm told I get one more, so I assume that's it if this is clear. I am on a trial, so my bloods get checked every 6m, but I suspect the CEA marker is not valid for me. Oncologist call in a year. So your regime sounds about the same. Not that that is any consolation!! Take care xx

Katz51 over 3 years ago

Sounds about right.In the last 2 and a half years Ive had 2 ct scans and at first 3 mthly cea checks.now on 6 mthly.just a check up phone call after the cea results from a colorectal nurse.told after 5 yrs it finishes.never seen anyone in person because of covid rules

They do always say I can ring if I am worried about anything in between.

I presumed that was the regime for everyone

Kath

court over 3 years ago

Hi ,

You can check out the NICE Guidelines for clinical practice. They give the recommendations to follow . I think there is some allowance for timescales but it might give you some reassurance.

Take care ,

Court

Helpline Number 0808 808 0000

Kareno62 over 3 years ago

Hi . I’ve just been signed off after 5 years and had the first colonoscopy since being diagnosed although I’ve had yearly scans and regular CEA checks. I think checkups can vary a little between health authorities but the NICE guidelines were amended about a year ago if you look in section 1.6.1 in the link below

https://www.nice.org.uk/guidance/ng151/chapter/Recommendations

I’ve attached a link to staging as well - you were stage 3 because the cancer had spread to the lymph nodes but not anywhere else

https://www.macmillan.org.uk/cancer-information-and-support/bowel-cancer/staging-and-grading-of-bowel-cancer

Hope this helps

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

FormerMember over 3 years ago in reply to Kareno62

Thanks Karen

I will be too anxious to wait another 2 years for my next scan after 6/5, i might have to pay for one for my peace of mind. North Wales seem to do the minimum by the looks of things, doesn’t help how your mind works!

I thought as much re the TNM but I’ve seen people with stage 2 but the T is 3, a bit confusing

Great news you’ve been signed off

sue x