Oesophageal Patients Association
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No followup 18 months post-op

I am 18 months post op from oesophagectomy.Saw the surgeon 6 weeks after who said my histology report was excellent. But not seen anyone since and just feel a bit isolated as if that's that . so to speak dont like to make a fuss but still have queries about my diet and problems but there doesn't seem to be any followup.

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Hi

Not wishing to make you feel more isolated here (honest). Where are you located?

After my surgery in St Thomas's, London, I was looked after and still am, by regular visits to my Surgeon (the wonderful James Gossage) and my Oncologist (Justin Waters). Initially this was monthly but is now every six months and includes Scans & blood tests. I have requested that we drop the scans now.

I just assumed that this was the norm? Although I was aware that my Surgeon has a reputation for going over and beyond in his aftercare. He has directed me to dieticians and a gastroenterologist to help me (and they have).

Bruce

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Gosh Bruce ~ what good aftercare!!!!

Likw Creoncol, although surgery only 8 months ago we have very little follow up or support. We will see the consultant once yearly for 5 years, but other than that we have seen nobody and certainly don't get scans, although we did enquire.

Creoncol ~ we too have many questions. I hope you manage to get some answers, but we do find Health Unlocked a great help. Good luck!!

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Caroline is 18 months post op. We have finally given up going to see the support nurse, all we got was platitudes and ' you will have to learn to live with it' I feel like writing to the surgeon and tell him how we feel let down. I feel she should have had at least a scan by now.

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I would suggest that you do contact your surgeon. I honestly have never had to ask or chase help with my surgeon. He answered every call and email having provided me with both. He is attentive and listens to everything I have to say always offering an opinion and help. I have never once had to question his commitment to me. It saddens me to hear that you are not receiving similar. This is massive life changing surgery and often it is us that provide the feedback that enables the surgeons to make changes/improvements to those who will come after us.

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My understanding is that scans aren't done .I was told that statistically they don't have any effect on reoccurence rates .And I guess unnecessary cost and exposure to radiation comes into it .

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i was also told that follow up scans were not done as nothing could be done if cancer showed up, but after attending a meeting regarding a support group a surgeon said something that frightened everybody, I then had a scan done privately that showed that cancer was back but slow growing, I then had a course if chemo and it has gone but am having scans every ten weeks, this has really upset me as I have been lucky that I paid for my scan and I understand that not everyone has the finance to do this. It was two years since my op where my whole stomach was removed, my life has completely changed, i am thin not fat !!! can only eat little , but I still have a life and want to help everyone that I can.

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Well done for getting through the op.and to this stage. I suspect In your case the hospital will wait for you to get in touch with them as on a routine basis there is nothing for them to do - scans are possible but why scan if there is no issue? It just gives a radiation dose but of course can give reassurance as well. I am slightly surprised you haven't had a further follow up than the six week one however I did. It is at its best a sign they are very relaxed about your case which is lovely.

I think and I may be wrong that hospitals vary in their approach but at the stage you are if you are fine then that's fine, and there is nothing for the hospital to do, if you are uncomfortable for whatever reason then they would expect you to get in touch and frankly will be delighted to see how you are getting on.

I have been through the same as you and discomfort with eating ( dumping ?) can be investigated and alleviated by amongst other things diet and I suggest you ring the hospital treating you and ask for an appointment with the specialist nurse / dietician. Or go to your GP and go via him/ her.

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Sorry I would also suggest as some replies have that you have full blood test as your digestion will have been effected and the take - up of vitamins etc Can be impaired. I had v low vit B12 and needed a course of jabs to bump it up. You GP is the place for this. I have full bloods every 6 months and they can provide reassurance apart from anything else.

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That sounds strange. I have an annual check up although they do advise that if you feel you need a check up or think you have a problem give them a call. Some surgeons delegate the Che™k up to the nurse. Most say that if the thing is returning you'll know.

Haward

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Hi there. I had follow ups every three months for a year then every six months. I'm about 21 months post op. You shouldn't be afraid to contact your Nurse Specialist team with any questions. That's what they are there for. You should also have been contacted and have regular appointments with a dietician. Having said all that, generally they won't send you for scans unnecessarily, unless you are complaining about a specific problem. As mentioned, blood tests are useful too as you will have problems absorbing all the necessary vitamins and nutrients from food. If they don't hear from you, they may assume everything is fine! Contact your nurse specialist and go to a local patients' group meeting for extra support and advice. But glad to hear your last consultation was a positive one.

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Here in the US. Esophagectomy was in May 2014. I had CT scans every three months for the first two years post op and every six months in the year since. All have been clear, thank you God. My doctors put me on an annual schedule after my most recent scan in July 2017.

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Regarding the scan, in uk unless you are private you do not have follow up scans, it was at a support group meeting that really frightened me, in fact it was to do with setting up a support group, there were about 30 of us attending when one of the surgeons came in to give us a talk, his words were nice to see so many of you here just a pity only 50 per cent of you will be here in 5 years time, This comment nearly destroyed me, and it is this comment that made me have a follow up scan privately, it has left me having very little faith in my local hospital,I believe this is the only cancer that does not include a follow up scan, don't want to worry you all but I truly believe if you want a follow up scan then you should have it. This is the first time I have written about this but it is true and it is something I want to fight for.

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Creon I think one can feel very adrift after the op .

Like bruce I had my op at St Thomas's .Mine was in 2013 .

I can only think that bruce has been seen as a private patient because his follow up care is very very different from mine which has seemed delivered by an overworked dept who forget things and seem a trifle disorganised .I'm not complaining - I think the priority is not aftercare and also that it's up to the patient to shout .

As far as I know the norm at St Thomass is an outpatient clinic where one sees a dietician and a specialist nurse . An initial appt is booked after the op and then you can self refer if you have worries .

The dietician is great ,they both seem nice but very overworked .

No regular appointments ,no scans .If I want a blood test I have to ask my GP .I could ring up and ask for an appt at the outpatient clinic and ask for blood tests but I feel I may as well ask GP .

I hate to bother people and use their time .and get v flustered at appointments .I have had troubling episodes of a seizure nature and ( because I'm better able to express myself in writing than at hospital appts ) emailed trying to explain this but somehow it all got lost in translation .

When I tried to explain them again ,in person at the clinic a rather cross looking gastroenterologist Dr Dunn was dragged into the room and said it didn't sound like dumping and that I should have a nuerology consult .And 18 months later the neurologist is saying no no sounds like digestive causes .

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As you say St Ts very busy but I've found them first class in every respect....I do hope you've managed to get another appt with Jason Dunn he is very well regarded in his field and will put you right.

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I'm not a good patient ! I can't get the balance right between not making a fuss and knowing when to be proactive/taking responsibilty for my own health .

It's not a position that gets any results from an overworked NHS -) .

I've never had an appt with Mr Dunn ,just an awful encounter where he'd obviously been interrupted and dragged into the appt I was having with the dietician and specialist nurse .He looked furious .

I think I've more or less worked out the triggers for my seizure like episodes and I hope I'll manage .

I can't face any more 6 month waits culminating in an appt and then a copy of a letter to GP where incorrect facts are reported ( tendency to fall - nope ,never said that ,followed by diarreah - nope never said that ) .I just can't seem to get my message across - clinging onto a lampost while my vision plays circus tricks zooming in and out ,disorientated to the extent that I can't work out how to ask passersbys for help ,vertigo too strong to allow me to move a muscle is described as " had to wait to cross the road " .I can only assume that it's thought I'm exaggerating .

So really I'm just going to try and manage .But it's dispiriting to keep reading Bruce's glowing reports .I feel as though I'm not deserving of great care ( he's had a much rougher time ) so I don't get it .

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Bruce is private which may make a difference but I have gone private and NHS and found the NHS brilliant. You say you are not a good patient but the very fact you are aware of the issues means your are a good patient or at least as bad a patient as we all are. I would send a letter to Joanna Taylor and Orla Hynes at St Thomas's ( specialist nurse and dietitian) setting out the problem as you have above ( I suspect it was they that dragged in Dr Dunn and you from his point of view can see why he may have felt a bit ambushed ) .....don't give up be persistent and reasonable and well done for getting to where you are. I had my op by Mr Gossage in 2104 and it has been a very up and down ride from stomach pain and tiredness but I like you have more or less worked out the triggers...

I think that there are so many niggly and not so niggly things that can go wrong after oesophegectomy / gastrectomy that the medics are at a loss to work them all out, and other than offering reassurance that the suffering we endure is not a recurrence there is little they can do. Survivors of this cancer are thank heaven growing in number and they will get better at the side effects but it is possible to see why the major efforts are centred on the disease itself.

Don't give up get back to Gassiot house they WILL help you :)

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"I think that there are so many niggly and not so niggly things that can go wrong after oesophegectomy / gastrectomy that the medics are at a loss to work them all out, and other than offering reassurance that the suffering we endure is not a recurrence there is little they can do."

"the major efforts are centred on the disease itself."

Mark those comments are spot on ,well put .

This is a great forum with fantastic helpful and wise posters ,it always helps me .

And ...come back Bruce ,you're one of the great posters as well .

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Violet

Let me try and help here and answer some other points in doing so.

Yes I was a private patient of James Gossage and also saw Jason Dunn privately. So I am only qualified to speak of my experience, from that 'private patient perspective'.

For me? I had no complaints and it saddens me that you have found yourself in the situation you are in. Jason Dunn was good with me, but is very obviously extremely busy, and that showed. It is sad that you had a poor experience with him. I'm sure that he would not have wanted to walk away feeling like that. I can only urge you to reach out him again.

Your description of "hanging onto lamposts" mirrors my own episodes, that have been correctly diagnosed and treated as "Reactive Hypoglycemia". I now take Acarbose tablets with food to slow the guts reaction to sugar intake. This along with my own abstention from sugar has kept me from hanging onto lamposts. I did on several occasions prior to diagnosis collapse into unconsciousness at one point fracturing my spine in two places.

Try avoid all sugars. Or if you eat or drink sugary stuff, measure the time till you start to get the symptoms you describe. In my case it is always 90 minutes AFTER I have eaten or drunk sugary stuff that the symptoms will start.

The Acarbose helps this but does not stop it. Taking no sugar stops it but makes Bruce a dull boy. Equally I cannot tolerate alcohol now. I get very drunk, from the feet up, very quickly. So my body is drunk before my brain tells me I am staggering around. I have given up the booze now except for rare occasions when I risk a few glasses of white indoors.

Stop the sugar and see how you get on. Just try it for a few days.

I do wish you well and hope you get the treatment you deserve. It does not sit well with me that you have been treated as you say you have given the trauma you have had to suffer to get to this point.

Bruce

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Hello Violet

Surely by now you must have developed that sixth sense of when a 'wobbly' is impending?

Now, whenever I get that vague feeling of disquiet I immediately (1) sit down (2) crunch 2 or 3 barley sugars.

Sitting down is critical in that it avoids further depletion of already low blood sugar due to exercise; also it keeps one out of harms way as in that condition rational thought has generally vanished, along with the onset of strobing vision etc.

I have other preventive strategies as well. Since Reactive Hypoglycemia is a concomitant of Dumping I never get up from the table before 90 to 120 minutes has elapsed since the last bite. (To avoid an entirely sedentary existence I only eat twice a day and use the enforced idleness to write stuff like this!)

An exacerbating factor for seizure triggering is low blood pressure so I take great care to stand up slowly.

Friends and relatives have been trained that as soon as they see me irrational/stroppy they must see that I institute steps (1) & (2) above.

Following this regimen I have never had any problem whatsoever. Prior to working it out I had been scraped up by ambulance several times, also incurring the smashed vertebrae à la Bruce. All of the foregoing happened in the face of blank incomprehension from all in the NHS.

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Hi i was under UCLH and am seen 3 monthly this is for 2 years., I had my op there March 2016 I would see the dietician there too. My CSN I could contact if i had any problems. I had my Oncologist at The Royal Free and another CSN where I had my chemo. I only had scans at Royal Free and follow up appointments 3 monthly. I also have blood tests at my drs every three months to check all my levels.

Not all hospitals offer scans i was told. It seems strange you havn't had another follow up. Contact the secretary of your Consultant.

Best Wishes

Debbie

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