Follow-up Surveillance Question

FormerMember over 6 years ago

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My wife had Stage 3 high risk CRC and is about to enter the surveillance period following completion of all her treatment. On standard offer at her hospital, is the NICE standard offer.

I'm interested to know what other people have been offered elsewhere in the UK. I think there is flexibility in what is allowed to be offered.

We don't think my wife's cancer ever showed an increase in CEA levels and so what's the point in that test for her (only 70-80% of colon cancers make CEA and the CEA blood test is 50% reliable in any case). She'd prefer a different blood test, like the CA 11-19 test (98% accurate) or the test for the SEPT9 gene (if the gene isn't present, it's 99% certain she is healthy).

If she can't get either of those tests, she'd prefer more frequent CT scans and colonoscopies.

FormerMember over 6 years ago

Can you ask the team if the CEA was raised pre-op? I have the same staging and risk as your wife and I guess that I am having the standard monitoring, 3 monthly CEA, 6 monthly CT scans for the first two years then on to 6 monthly CEA and yearly CT scans. I am going to have my first colonoscopy post treatment in September just over 2 years from my first major op, a little later than usual as I had a temporary ileostomy and had to wait for reversal before I got onto the colonoscopy list. I will be due a second one within 5 years. I didn't know that there were other blood tests available. I assume that you would have to go privately to get them done as as far as I am aware the NHS only gives the standard NICE recommended treatment due to financial constraints. I don't know that you are given a choice, I haven't been. It certainly sounds as though it would be worth following up if you can afford to go privately. Good luck with it all.

Nicky

court over 6 years ago in reply to FormerMember

Hi ,

It might be worthwhile still doing the CEA test . Once you have the chance to observe it , it actually may still have something to offer . My mum’s barely rises with a substantial spread but it does show very small increases , an upward trend when she has a met despite still being under five . Some chart it as percentage rises . I think the upward trend matters as much as the numbers .

Only ten years into it has CEA become unreliable as something else is now causing it to rise . It stayed up for six months despite two clear scans and it has just suddenly dropped .

Not sure what the position is on the other tests . They may be open to using it if CEA is of no benefit . Additionally my mum gets all her bloods done by her GP practice so you can ask them if they would be open to using other markers . I don’t think my mum’s GP would have an issue if there was no additional cost involved. If there was that may change it . Worth asking .

Take care ,

Court

Helpline Number 0808 808 0000

FormerMember over 6 years ago

Hi ,

Apologies that I can't offer any useful information re other surveillance options. But I was interested in the alternative tests you mentioned. My CEA was 0.6 pre-op and 0.5 post-op, so clearly I'm not putting too much reliance on that. Next round of blood tests (due in about five weeks) will be done by my GP, so I will discuss the other options with them.

On the up-side, I had my first post-op colonoscopy a couple of weeks ago, and that was all clear. Slowly closing in on the one year mark! (CT scan and blood test still to come before then).

Kind regards,

Yolande

FormerMember over 6 years ago in reply to FormerMember

Hi Nicky - you are on exactly the same journey as we are on. My wife has just had her ileostomy reversed after only ten months though and I have to say, her recovery is quite remarkable already. I hope you are in the same boat.

this is the standard NICE guidance for surveillance:

Offer patients regular surveillance with:

a minimum of two CTs of the chest, abdomen, and pelvis in the first 3 years and
regular serum carcinoembryonic antigen tests (at least every 6 months in the first 3 years).

Offer a surveillance colonoscopy at 1 year after initial treatment. If this investigation is normal consider further colonoscopic follow-up after 5 years, and thereafter as determined by cancer networks.

All good for my wife now though, because her surgeon is a good woman. She is putting plenty additional checks and balances in place beyond the minimum NICE guidance. They can use their discretion it seems.

We also found out that she didn’t run a CEA test before the major surgery after all, so we don’t really have anything to judge her current CEA levels against pre operative levels, all we know is that they are low now.

My wife’s GP however, did run a CA 125 blood test on her as part of diagnosing her last year, which is a test more normally done to detect ovarian cancer, but it can also show for colon cancer too. It came back normal though.

It might be worth talking about what you would like in place instead of what your bog standard offer is. We have gone out of our way to be fully informed at all stages of this journey and being able to talk to your doctor/surgeon/oncologist from an informed position, makes them treat you with a great deal of respect and engagement. It has stood us in good stead at least - but it does soak up a lot of time learning about things you never wanted to!

I wish you the very best.

If you would like to follow my blog, which you might find interesting parallels in (needs an update after the reversal), you can follow it here:

https://exposingoncology.blogspot.com

Regards