Hello All
Just wondering what people’s experience of surveillance has been like & if theirs has differed from the recommended guidelines?
I’m now (very gratefully) in year 2 (with a complete response to treatment so far) & appreciate surveillance is dependent on staging & treatment response.
So I’ve been surprised to find my hospital proposing for my advanced cancer (T3, N1a, M1):
They seem to have skipped year 3 altogether in terms of scans & when queried emphasised year 2 as the most likely for recurrence (local & distant) despite guidelines & evidence from The Plato Trial & the Christie to the contrary who suggest:
“For patients at high-risk of local relapse (advanced cancer) additional MR scans are performed at 12, 18, 24, 30 and 36 months.”
And:
“For all patients (high- and low-risk), surveillance CT scans of the thorax, abdomen, and pelvis should be requested at 12, 24 and 36 months to assess for distant metastases.
Beyond 3 years, patients should be considered for clinical follow-up until 5 years after chemoradiotherapy”.
I know that service provision is dependent on the dire state of funding in the NHS & an issue for variability in cancer care in general, not just for AC.
At my hospital for eg us AC patients are tagged onto other oncologist specialty caseloads (not even colorectal) where I’ve never seen the same consultant or registrar, always different ones each time (who are all lovely & my observations aren’t personal).
But I’m always struck how they all remark as though surprised, on the redness & state of my skin when performing DRE’s, which makes me wonder how much knowledge or experience they have of AC esp when they ask if I’ve been scratching or irritating the area!!
And I do appreciate AC is still considered a rare cancer (& why maybe surveillance may vary hospital to hospital perhaps). And may have read surveillance is done solely by DRE alone in the US for eg ?? (Correct me if I’ve got that wrong!)
While I’m anxiety prone at the best of times (!) I do accept that surveillance is (scarily) reduced from years 3-5, with no scans - if we are lucky enough to get that far.
I just can’t reconcile there being no scans in year 3 at all (for advanced cancer) & only DRE’s.
When I’ve raised these concerns, to give them credit, they have acknowledged them but none have changed the schedule.
Would others be pushing for this?
At the same time part of me doesn’t want to fight for more only for recurrence then to be confirmed (the ignorance is bliss delusion) so I can’t win either way!!
Thanks for reading thus far - be interested to hear others’ thoughts/experiences.
Lorraine x
Hello Irene thanks for your reply - lovely to hear from you too & timely too by the sounds of it with you en route to have your next scan. I’m so pleased to hear that your lungs are all clear & will keep everything crossed for continued good news 
It does sound extremely thorough & supportive & personalised to you esp with them reinstating the MRI in response to your stenosis. Although as you say the flip side is the dreaded scanxiety with that many scans - oh the double edged sword!!
So I did ask why they’re not offering any in year 3 & was given the answer that year 2 is when the greater risk is presented etc & that anything suspect will be picked up by DRE & can be responded to accordingly. I reiterated that I was told at diagnosis that for advanced cancer like mine (with non local lymph node involvement) that years 2 & 3 are critical - so it is hard when you hear differing information & then read what is regarded as best practice in other (allbeit specialist) cancer hospitals. I think I will just outright ask for one like you say & maybe ask to speak to one of the consultants rather than the registrars if they don’t oblige.
Will keep you posted! Thanks again & well wishes x
Hi Mrs Vanilla
Good to hear from you thanks for your reply & for sharing what sounds like a similar schedule. And yes there is (probably a very big!) part of me that doesn’t want to rock the boat & push for more scans as ignorance really is bliss!
I think the recommendations are the Christie’s protocol who being a specialist cancer hospital have most probably the funding & resources to be able to implement & follow best practice unlike my own hospital - so I should maybe get my expectations in more check. And I know it’s so easy to play Dr Google after a bit of online research. And maybe the schedule proposed is good enough. I think because it conflicts with what I was told at diagnosis (in terms of recurrence risk in years 2&3) & that I’ve got non local lymph node involvement - that I was just a bit freaked not to be scanned in yr 3.
Agree that more scans must equal more radiation so there is that. It is really helpful to hear what others are receiving in terms of treatment & care tho. And maybe only the specialist hospitals are on a position to offer like you say a more enhanced protocol.
Thanks again & continued well wishes to you (as aside from the schedules etc it’s a great place to be needing less input than more for sure 
).
Lorraine x
Hi Nell
Thanks for your reply & feedback on your experience - it really helps to put it into perspective & that this is the way others are experiencing it too.
That is an incredible amount geographically to be served by London & I’m getting the picture that it must be the case nation wide then. Not that I’m ungrateful for the care & treatment I’ve received to date! We must be a very rare breed us AC lot who have to get tagged onto other departments!
Sorry to hear you had such a prolonged time of surveillance & then eventual diagnosis. I had pre cervical cancer (around 20 years ago) as well - it’s weird how it shows up again literally centimetres/inches away from the original site. And even more odd how you can have a clear smear HPV result & yet simultaneously (& unknowingly) have AC as well?? (Well was the case for me anyway).
Anyway I really hope your DRE went ok today & that you got a good outcome? And that you can relax a bit (until the next one…
)
Continued well wishes
Lorraine x
