Post Ivor Lewis Check Up

[Cavalier3]

I’m just curious what happens or happened when you all went for your post treatment check ups? I’ve just moved to every 6 months. I just have a chat with one of the surgeons he has a feel around my stomach and that’s it really. Do any of you have follow up scans or an endoscopy? I will say my recovery has been very good. I’ve maintained my weight throughout and I’m very active.

[ccfc]

Hi Cavalier3, I didn’t have any scans. They would X-ray me and the only endoscopy’s I had were when I needed a stretch which was several times over the first 18 months. Best Wishes, James.

[Cavalier3 in reply to ccfc]

thanks James.. that’s good to know your experience is the same. Sue

[KfromUK]

hi Cavalier 3

I’m 3 years post IL and like others my reviews have been non invasive. Predominately they seem to monitor my weight and activity/ lifestyle. ( I think we all acknowledge weight loss is not a good thing)

Unless you are experiencing any particular symptoms they tend not to opt for invasive procedures such as endoscope, X-ray , other scans.

If you feel anxious reach out to your GI team and ask them directly what you should expect?

So glad you’re recovery seems well!

Best wishes

K

[Cavalier3 in reply to KfromUK]

thank you so much K… I’m doing really well and yes they always seem really pleased with my weight and how active I am. I’m happy that I’m experiencing the same as everyone else and it’s how it should be. The team of people I see are amazing. I’ve read a couple of times people having check up scans but maybe they aren’t in the UK. You know how you worry about nothing! Thanks for replying. Sue

[KfromUK in reply to Cavalier3]

no problem… yes I think treatment plans vary across health systems?

Here in the U.K. the NHS pressure is well publicised. As I said it sounds like you’re doing great and you have age on your side too… ( that’s what they keep telling me too and I’m 57 diagnosed at 53)

You know yourself better than anyone so don’t let things worry you, reach out and ask.

Enjoy your day!

K x

[Cavalier3 in reply to KfromUK]

My family work in the NHS and I used to myself. It’s heartbreaking to see the pressure it’s under. Yes you’re absolutely right and my husband tells me all the time not to worry but I can’t help it some days. Thank you K your words mean a lot. I’ve got 2 dogs here begging to go for a hike in the woods so up and at em.

Have a great day. Sue

[KfromUK]

oooh lovely!! And I’ve got a business to run!! Go girl! We’ve got this!!!😉x

[Cavalier3 in reply to KfromUK]

Yes we have! Have a great day!! Xx

[petercaron]

I am 5 years post chemo/radiation/ esophagectomy and live in Atlanta Georgia area. Even though my surgeons were confident from the surgery that they had a good surgical outcome, I was provided PET scan 2x the first post surgery year and then CAT scans every 6 months for the next 4 years. Now I am scheduled for a final CAT SCAN when I hit 6 years out. .

it seems that while we pay very heavily for it in the US, it seems somewhat easier to get Scans and Dr follow up appointments here Do others sense that?

[Cavalier3 in reply to petercaron]

hi Peter, it must be posts from America that I’ve read about routine follow up scans. It was actually a Facebook page. I thought I was missing something but it seems to be the normal not to have them in the UK. It’s good to hear you’re doing so well almost 6 years on.

[petercaron in reply to Cavalier3]

I meant to mention that I have had about 4 endoscopies over the last 5 years that were performed for stretching purposes only due to reflux issues. Last one was completed about 4 months. The endoscopies really provided a sense of relief after each one that all looked good.

The thing that helped me most to eliminate reflux problems almost entirely is sleeping in a recliner I have a bed that inclined but that didn’t cut it.

I thought I also noticed that many endoscopies in the UK were completed without being put out. is that true?

How long since your surgery?

[Cavalier3 in reply to petercaron]

I’m 19 months post surgery (March 2021) and on the whole I’m great. I do sometimes feel I need a stretch but as you say we have endoscopy awake and the thought terrifies me! It was the worst experience of my life! They are supposed to sedate us but it didn’t do much for me. I sleep virtually sat up too. I use a Queen Rose body pillow and tuck the leg bits under my bum to stop me sliding down then loads of extra pillows and it works.

[Onebox21 in reply to Cavalier3]

I'm in Canada and totally on a public health care system. I'm 4 years post op. and like Petercaron, I got CT Scans every 6 months up to 2 years and then once a year until 5 years. My surgeon told me 90% of recurrances occur within the first 2 years and only detectible by a CT Scan.

[Cavalier3 in reply to Onebox21]

Thank you Onebox! I will ask at my next check up why we don’t have scans. Its good to hear how well you are doing. Yes I’ve read that before about the 2 years recurrence. I’m not quite there yet. 5 months to go.

[mgloughran in reply to petercaron]

Hi Peter, I live in Lilburn, GA and was diagnosed with late stage 3 esophageal cancer in January 2014. Sounds like we've traveled much of same path. I had all of my treatment and surgery in Greenville, SC - where we were living at the time. Saw that you were from this area and thought I'd say hello.

[petercaron in reply to mgloughran]

welcome to Ga. Yes I had great treatment at Emory St Joseph Hospital in Atlanta.

[purplekey]

I’m 18 months post op. My experience is the same as yours. I also speak to the dietician too every 3 months as I have lost weight. Certainly don’t want any scopes thank you! No scans either.

[Cavalier3 in reply to purplekey]

Hi purplekey, I feel better now that it’s normal for us not to have them. I really don’t want them either. I think the endoscopy is up there with the worst experience of my life! Hope you’re doing well apart from your weight loss.

[purplekey in reply to Cavalier3]

I’m doing well and the drs seem pleased with progress. I seem to be getting a bit better at eating too. The surgery is a big shock to the body, my drs Told me it would take 2 years to recover and they were right. Take care. X

[Molly14]

Hi Cavalier - so pleased to hear you’re doing so well - think we’ve spoke before - im 7yrs post Ivor Lewis now - surgery Newcastle and no routine scans but told if any concerns to contact my specialist nursed which I had to do last year as I was having severe abdominal pain so was sent for a scan and I must admit to being absolutely petrified - all was fine thankfully - I think it’s different across health systems like K said - love being out walking my dog or riding my pony - all the very best xx

[Cavalier3 in reply to Molly14]

Hi Molly… yes we have spoken before and you’ve helped me a few times.. I live on the Wirral and have Clatterbridge and some amazing surgeons on my doorstep. I really have nothing but praise for my care. I just got a little worried that people we’re having scans as part of their check ups and I wasn’t but it looks like it’s normal for us and what’s done in USA/Canada xxxxx you’re doing amazing! Always an inspiration to me

[Spikey]

I am 15 years post-op. I saw my surgeon and my oncologist every six months for two years, but then called it a day. I was making good progress and it became clear to me that the only reason they were seeing me was to check that I was still alive and feeling OK. If I had a problem, I could always call the CNS, but I never needed to.

[ArtPepper1]

Hi, Cav. I'm in Australia, and had my Esophagectomy in February this year under the public health system. Post-op check-ups for me are verbal only - unless I present them any problems. Like you, my recovery "has been as good as they've seen" and weight loss has been from about 80kg to a more healthy 75kg. Eating everything, reflux medication (was 80mg Somac daily) dropped to 40mg. Sounds like you are doing really well...

[Deeedals]

hi Cavalier I’m 16 months post Ivor Lewis, I recall talking before as I think were about the same time scale.

I have a marvellous team and no scans up to recently when I was having back problems.

Long story short my physio advised a scan arranged through my specialist nurses in case it was secondaries. All arranged in a couple of days. It was a slipped disc but they also found narrowing in 2 places of my new plumbing that was causing vomiting/ reflux problems. ( I had an upcoming review and I was going to mention it then)I saw the consultant who wanted me in for endoscopic stretch on 3 rd November.

Unfortunately in the meantime my bowel ruptured up through my diaphragm into my stomach so I’m currently in hospital having had a repair.

So if you’re worried at anytime get in touch with your team !

[Danstable]

I'm the UK and had 6 scans for 2 past op, then on to annual scans up to 5 years post op (May will be 4 years). However, this is not routine.

They listened to my concerns regarding recurrence and the impact it would have on my young family (I was 41 at diagnosis). The scans are just to give me as much warning and time to plan as possible. They made it clear that any recurrence would not be operable.

[kiddy]

Hi,

I had my op in 2016 at 55. I only had another endoscopy and ct scan when I had a chest infection the year after as they thought I had secondary.

Yes I was seen for 4 annual appointments and it was just check scars, feel tummy. Saw dietician for dumping and had few tests as they thought I had SIBO.

Only need to contact Hospital if I have any problems swallowing which I think is the norm.

Best Wishes

Debbie

[AussiePeterInLondon]

I'm now 7 years post-IL and I seem to get a Cat-Scan sporadically - was every 6 months first 2 or 3 years, then every 12 months and now much less frequently. It's probably be 2+ years since I've had one.

Like the experience you and others have had it mostly seems to be my surgeon having a feel around in my lower abdomen and stomach feeling for something.

I guess I'm interested in what it his he's feeling for .... any ideas ?

I'm in the UK and was fortunately able to do mine Private (employer's medical insurance). I suspect that if I asked I could get another scan.... thoughts on having it done more often

[purplekey in reply to AussiePeterInLondon]

may be his wallet! X

,,,

[bigemu]

HiMy post OP medical appointments were probably just like yours,shirt up, check, shirt down, asked about activities, and then good bye.

I reckoned they were right, 10 years on and still going strong

Just don't worry about the light touch , they are happy with you, and so should you be.

Keep going and fingers crossed, O and keep active.