IL Follow up

[sms80]

Just discovered this site - wished I had found it sooner for all the advice and reassurances it has given me. I am curious as to what other follow ups people have had. With other types of cancer some people have had follow up scans, etc. Since my op 15 months ago I have not been offered any, is this normal? I have an appointment with the consultant every 6 months, who asks if I am eating ok, (which I am), if there are any problems, (mostly the normal dumping, which has been lessening over the last few months) and am I maintaining my weight. And that is it, back again in 6 months. I take Lansoprolzol 15mg each day.

[Buzzboy]

Hi there SMS80. Agree totally with you about this site - finding that others have the same issues - and how to manage them - is really helpful. I've been in the 'Little & Often' Club for nearly five years now (since my Ivor Lewis op) and like you have regular checkups with the consultant and no other follow ups. However from my reading about CT Scans - seems they expose one to a high dose of radiation and so are not recomended if you have no symptoms. I got the impression that if you are lucky enough to have no 'spread' of the cancer (mine was T2N0) then post op scans would not normally be considered. The NHS Choices web site reports that a whole body CT scan is the equivalent of 4.5 years background radiation. So - I'm more than happy to have no symptoms and no scan!!

Here's an extract from the NHS site: "if you don't have any symptoms, the benefits of having a CT scan may not outweigh the risks, particularly if it leads to further unnecessary testing and added anxiety".

[sms80 in reply to Buzzboy]

Thanks for the reply. My cancer was T3N1 with the removed lymph nodes negative. The reason for my concern is that a colleague who had colorectal cancer two years ago has had yearly CT scans which have now shown a secondary, although there are no symptoms. This is going to be dealt with to avoid any further spread. It just made me wonder what was going on inside me without my knowing! I can see your point though.

[hunsdon in reply to Buzzboy]

Hi Buzzboy, I ditto your comments totally I am post 2years and 2 months from my Ivor lewis op, and I was lucky enough to have had the all after so check ups have about how I have been, so your comments cheered me up no end so thank you for a little more reassurance and by the way I just love the little and often club.

Tina x

[woosley]

You are doing OK, you really are. In the UK scans are not normally carried out. The surgeons believed they have cured you, they would not have carried out the surgery unless they believed you would be cured, after all the surgery cost about 50 grand in total, so I believe, so they do not do it lightly. So therefore they do not do regular scans, just accept that with changes you can have a normal life ahead of you, it takes a long time to get over any surgery on the digestive system so be kind on yourself, try to relax and enjoy your life. x

[sallym]

Sounds as if you are doing well, the operation is only done when the chances are good.

There are lots of ups and downs on this journey, which doesn't stop us from worrying and looking for signs of it recurring. I haven't had any scans since and appointments went from 3 months ,6months a year and finally we don't need to see you again. My lifeline was the surgeon who said if you feel things are wrong ring up my secretary and I will see you straight away. My second lifeline is the knowledge over the years that I have acquired from meeting and talking to patients at Opa meeting. I am now into year twenty. So best wishes

for your journey sally

[spanner16]

Try and twist it round by thinking 'Its a good thing they don't want to scan me'

They are only going to scan you if they are looking for something - if they are confident that there is nothing to look for then take their word for it.

Welcome to the worst and yet best club! This place is amazing!

[strangetimes]

Pleased to read this thread . I can understand the reasoning behind the " no follow up scans " but am scared something will start growing and I won't know about it until it's advanced .

I guess feeling this way is inevitable after the shock of oesphageal cancer diagnosis .

But will try and focus on the surgeons confidence that I'm cured . After all I trusted them to do the op and they did me proud ,so must try and trust them on this .

[DavidP]

Hi There, On the issue of scans, I had a scan 3 months post op and after I'd finished the final chemo cycle to provide a "baseline" image for comparison if a scan was needed in future. I had follow-ups at 3-monthly intervals for the first year and I've now gone to 4-monthly intervals (18 months post-op) with a blood screen (haematology and biochemistry for organ function and tumour markers - CA 19.9 and CEA). If you are having the blood screens then these should in most cases provide an early warning. My consultant also mentioned that recurrrence with oesophageal cancer is likely to result in symptoms which will prompt consultation and that scans are unlikely to provide any further benefit in detection (if you are having bloods and a regular physical exam). The inference is that the risk (and cost) outweighs the benefit. Each type of cancer has its own risk benefit profile when it comes to scans, hence different approaches depending on the site and type.

[hilr]

Agree with all of you. I worry about what might be going in inside despite my feeling fine...... But I guess if we get a recurrence then we're on that slippery slope......

Would be interesting to know the outcomes of this wait and see approach...but not sure how it could be measured.

I think I found it confusing because some people post on here about their clear scans and associated relief and I wonder why are they being scanned and not me. Someone said its because they're on trials?

I'm 9 months post surgery and 5.5 months since chemo finished and back at work full time plus some. Eating is still improving but ok and I've been very fortunate to maintain my weight throughout. Still get occasional dumping and take no drugs. Do get incredibly tired and fell an awful lot older than before cancer. The fifty shades of grey poodle perm hair doesn't help with that but can soon do something about that.

Good luck to you all in fighting this despicable disease!! And big cwtchs from Wales.

Hilary x

[DavidP in reply to hilr]

Hi Hilr, scans are a must have in clinical trials but generally not in clinical practice, so I guess that's the reason.

[terryletts]

your experience is quite normal as long as you continue to improve just carry on and enjoy life

[sms80]

Thank you all so much. You cannot begin to know just how much you have helped and the comfort I have gained from knowing that you are all out there. As you say, it is a long journey and although my family have been extremely supportive, it is not the same as sharing with somebody who has actually gone through the same experience.

[lizthebob]

I too have had no scans or even any blood tests. Just a chat with my consultant every 6 months. That is the way it seems to be done down here and I think it avoids all the unnecessary anxiety waiting for the scan and then waiting for the results. He has said if I am ever worried he would have me in and do whatever is needed to reassure.

[Stevewellswood]

It's the same our way no scans unless medical need my doctors say by the answers we will know if any recurrence I am on 4 monthly at the moment after next appointments if all ok will go onto 6 monthly I am 21 months post opp now

[worthbanner]

I am 2 years, 2 months past surgery and had the usual course of chemo and chemoradiation prior thereto. I was T3N1 upon diagnosis and a very responsive chemo patient--80% tumor shrinkage with 3 weeks of chemo. I thus assume that the 3 additional weeks of chemo alone and the 5 weeks following of chemoradiation had eradicated the cancer before surgery, and indeed none of the tissue removed during the IL showed microscopic cancer, including 26 lymph nodes. However, I live in the USA where the standard of care dictates post-op CT scans for either 2 or 3 years at 6-month intervals and yearly scans thereafter for 5 years. I am fine with this, as I feel early treatment of a new cancer is a benefit that outweighs the risk of increased exposure to radiation. I don't believe science has determined with any certainty what increased cancer risk is produced by anything other than massive exposure to radiation, whereas the benefit of treating a new cancer is known with greater certainty. That said, I realize the standard of care differs with the NHS and that you must deal with their policy unless you go the private route in Britain or elsewhere. Best of luck.

Worth