What happens next?

Hi Lucy 78 and huge congratulations to your hubby on finishing treatment. I had a scan after finishing treatment and a meeting with the oncologist (who also specialised in breast cancer) who wished me well and said she ‘never wanted to see me again’. My follow up scans and appointments were then with the surgeon or a member of his team. I think recent NICE guidelines have suggested that 3 years of follow ups is sufficient for stage 3 although I’ve just had a 5 year colonoscopy and scan so it may depend on the health authority.

I think the best option would be to ring your colorectal support nurse and ask for a follow up timetable so you know what to expect?

Take care

Karen x

I think everywhere is different.I finished capox and was transfered back to the surgeon.unfortunately I seemed to get lost in the handover system and only got a  appointment by ringing his secretary directly.he saw me once and transfered me to the nurse lead colorectal clinic.I have been under them for 20 mths and they arrange ct scans and cea bloodtests.unfortunately because of covid I havent actually seen them in person,it has all been over the phone and bloods via the local drive through plebotomy service .hopefully I might see an actual person before my 5 yrs is up.

So as I say everywhere has a different system especially during covid which I do understand makes everything more difficult for them

All the best

Kath

interesting post, how did he cope with the therapy ? did he continue to work? i’m about to start so interested in how it effects others of your happy to share x

Hi Karen, thanks for your advice, sounds like hubby may hopefully be done & dusted soon then with the oncology team, had a very hard to understand telephone appointment a couple of weeks ago & they mentioned about cea level going up slightly, I’ve tried not to look it up too much but has left a slight cloud lingering, fingers crossed it’s nothing too much to worry about, & great idea about reaching out to the colorectal nurse, I shall definitely do that.

sounds like you’re doing great!

take care

Hi there, he’s early 40’s normally  fit & healthy, thought he’d sail through Chemo but I won’t lie, he’s found it harder than he initially thought, Personally I think he’s done great, most days he’s still managing to drive, do the odd school run, take the dog on short walks, watch our son play football etc..unfortunately he’s not been able to work due to brain fog, tiredness & numb fingers etc.. (has quite a high pressure senior role) but his management has been extremely supportive on every level! Apparently some people don’t get any side effects so guessing everyone is different. I wish you all the luck with your treatment, 3 months sounds a long time but it flies by! Take care xx

Hi there, thank you so much for your advice! Oh hasn’t this covid caused so much bother! We were told he would be looked after for 5 years so Looks like that’s back with the surgeon & hear team, they were amazing so that’s good to hear! Sounds like you’re doing great! & hope you get to see someone in person soon, take care xx

Hi Lucy 78. There used to be a really good fact sheet on CEA on the bowel cancer uk board which is no longer available but one of the nurses copy and pasted it into a post a while ago so ive attached the link for you. It’s from 2017 so the follow up guidelines might be out of date but the rest is pretty good - it’s the post by Sarah staff

https://community.bowelcanceruk.org.uk/forum/13425-raised-cea/218085#218085

Take care

Karen 

Brilliant thank you xx

Hi Lucy 78

My mum’s CEA went up both years she had chemotherapy. Just slightly . The actual chemotherapy can cause an increase in some people .

Hope that helps a bit !

Court 

Thanks for reply o guess chemo is individual abs affects everyone differently x