Scans

[toots1951]

I was a bit curious to know other people's experiences - my husband had the Ivor Lewis in May 2014. A year later a clear scan and in March last year a clear scan. Signed off by Oncology after the last scan, but still six monthly visits to see the Operating surgeon - latterly the Specialist Nurse who is great and I know these will continue for another two years. I suppose in my head I thought he would have a scan each year until the five years were up but it seems not.....

[phil]

My operation was was over 10 years ago and I was never offered another scan. I think the majority of us are in the same situation So please do not worry as I was told after the first 2 years clear, the future prognosis is excellent.

Regards

Phil

[HONORIUS]

I had my IL in June 2015 and I've never had a scan; but neither has this given me any cause for concern. I saw my consultant every three months until November, when he said he was happy to make it six months. The same applies to my oncologist, with the proviso that I should contact them should I feel anything gave me a modicum of concern. I have naturally had the resource of my McMillan caseworker to settle any doubts and queries too, which has proven invaluable. Far from finding this worrying, I've taken it as an article of my surgeon's faith in the efficacy of the procedure. Sure, there are days of Dumping Syndrome or occasional fatigue, but that's because we're all radically replumbed after surgery. I've been told that although after five years we are effectively signed of as being in perpetual remission if not cured, we're never 'taken off the books' and are welcome to seek advice and check-ups should we seem it necessary or harbour any concerns. I'd say that your team are convinced of a good prognosis...

[brucemillar]

The recognised term now used by Oncologists is "scanxiety" and very appropriate that is.

The thinking is tat the anxiety that is brought on by the post op scans, can be bad for patients.

I am now two years post op, and have been offered a choice of "no more scans" or "six monthly".

A recent CT scan in me appeared to show a recurrence that was confirmed by the surgeon and oncologist. It was "inoperable" so the conversation was then all about Palliative Care.

A further PET scan and Ultrasonic Endoscopy revealed and "abnormality" but no recurrence. The weeks between both sets of results took their toll on my beautiful wife.

Would I now, want to know? I think not. But I have to say, it changes almost daily. The mental struggle, with each ache and each nagging pain is now amplified. I always fear the worst. I was due a scan last week. I rejected it, on the basis that I feel pretty good right now and therefore probably actually I am pretty good.

"Scanxiety" sums it up for me.

[HDMIBENQ]

I also had the Ivor Lewis procedure. I have since had 2 oesophageal stretches and one scan. All clear. Surgery was in Jan 2015. I'm back at work full time and cancer free. Of course I see my surgeon and oncologist every 4-6 months but no issues so far. I wouldn't be concerned about scans I'd be happy to have one every 6 months just to check all is well. I do have a lot of blood tests.

[Danko]

I had my op in 2012 and have never had a scan since being discharged post op. I have 6 monthly checks by my oncologist and I think these will stop after 5 years. The checks just involve him asking how I'm getting on, feeling parts of my body for anything unusual and that's about it! I was a bit surprised there would not be any scans but agree with Bruce that they could have increased my anxiety especially if any rogue results were found.

[toots1951]

May I thank you all for taking the time to reply and really making me think logically ! I totally agree Bruce about Scanxiety and I just needed to be reminded of that. Thank you again all of you x

[Tescogran]

My husband is 5 yrs post IL and cancer found in stomach wall after 18 months, inoperable as it was the same cancer, told he had a few months left! They tried more chemo but had to stop as it made him very ill. He has had a couple of stretches arranged by our GP. Otherwise he has been totally abandoned by the surgeon and specialist nurse and is never called for a review or anything. The surgeon was totally disinterested when he had a stretch last October. We have no idea whether to say he is in remission, cured or what!! That is the NHS in Wales for you, we just keep calm and carry on. I wonder how he is recorded as an "outcome".

[toots1951 in reply to Tescogran]

I feel for you and how you and your husband have been left - we live in Nottingham and cannot echo your experience but different experiences around the country - sadly. Take care both of you xx

[hilr in reply to Tescogran]

Hi Tescogran

Sorry to hear bout the lack of interest in your husband's situation. I too am in Wales and am dismayed at the differences with England and the consistent failures to meet cancer guidelines, but, alas, the NHS doesn't have enough resources to meet guidelines.

Good luck

Hilary

[gutlesswonder in reply to Tescogran]

Tescogran

Have you considered asking for a second opinion?

See here-

nhs.uk/chq/pages/910.aspx

[Tescogran in reply to gutlesswonder]

Thanks for your responses. Fortunately my husband is not having as many problems as others on this site at the moment it is just galling that he has been abandoned. I would have thought that some feedback on how he is coping would have been useful for the specialist nurse and surgeon if nothing else.

[Hidden]

It is true that many people get anxious about scans, even to the point where some people even feel that without a good scan they will not be able to be cancer-free for the next 6 months. My mother-in-law would say that she had been 'given an extra six months' many years after her operation.

There comes a point when you have to trust your own feelings about your body and to be able to ring up if there is something that has changed, or is different, that needs to get checked out.

And the check ups after surgery are often much more useful if they are directed towards, say, digestion problems rather than confirming that the cancer element of the surgery continues to be successful.

It does all present quite a bit to get your head round though, and the hospitals do adjust their check ups to suit each patient to a certain extent, as we all have different issues for varying periods after surgery.

Going back to the hospital does carry some echoes of what has often been a bleak time for many of us, but this does fade over time as well. And it is always good for the doctors and nurses to see former patients doing so well.

[toots1951]

Thank you Alan

[fortunatus]

Surely your surgeon is the best person to ask about his/her approach to follow-up scans. Certainly I have never had a scan since the Ivor Lewis procedure 41/2 years ago. And the reason is that so far there have been no symptoms that would suggest their need. I think Honorius has set out the situation very well.

[toots1951 in reply to fortunatus]

Thank you for your reply - my thread was purely gathering other peoples experiences about this. We do know the Surgeons approach to follow up scans. My husbands scans in 2015 and 2016 were routinely ordered by Oncology from where he has now been signed off. As mentioned before I am very grateful for the replies.