Post treatment

Hi Ade, what an awful situation to be left in. Must be like having a ticking time bomb inside you. 

I don't suppose they can ever say your cured though. Even if they did, wouldn't you still be a little concerned?

I suppose it's the thought of another cancer site developing and going undetected. That shouldn't be the case though if they are monitoring you. I suppose it's a matter of how confident you are in the way they monitor you.

Try to settle down and live your life the best way you can. Each day is one you never expected to have.

Thanks geo ,yes I’m a positive person but it’s just a bit frustrating really,I have a lot of confidence in team and I totally get they can’t give guarantees but I was expecting scans ect but it seems  monitoring just means talking to me  and making sure I’m not losing to much weight  , but your right enjoy ever day as a bonus 

Hi Ade

I am a bit confused about your biopsy and the cancer cells that they found.

Have you had a biopsy since your surgery or do you mean they found four lymph nodes with cancer cells during the surgery.

please elucidate and I’m sure we’ll be able to share our experiences.

Hi Ade ..My husband is 5 months post oesophagectomy and 10 weeks post surgery chemo ..His resection margins were all clear and no lymph node involvement either …So a pretty positive outcome up to now ..However he hasn’t been told outright by his oncologist or surgeon that he’s been cured or in remission ..He’s being monitored every three months for the first twelve months via telephone consultation and no further action will be taken unless he reports any new symptoms ..If all remains stable during the first year he’ll then be monitored six monthly in the second year and then annually for the remaining three years up to the five year timescale …His oncologist told him the only way to actually know if the curative intent process has worked is simply if a recurrence doesn’t happen within the five years ..although after the first couple of years if there’s been no recurrence they do start to feel more confident that the process has been successful ….If I’m honest I have to say  I’m not impressed by the aftercare and would have at least expected a yearly scan regardless of any new symptoms or not …but all we can do is hope the process has worked ..continue with recovery and carry on with our lives to the best of our ability ..I totally understand how you feel ..We felt the same way but we’ve decided we are now going to focus on the positives ..accept that my husbands medical team used all their knowledge and skills to help him ….and only think about any possible recurrence if it actually does happen …..Wishing you all the best in your recovery and the future …It’s without any doubt a tough rollercoaster of a journey and for anyone to come this far in their treatment and recovery is truly admirable.

Hi yes they did a biopsy after surgery when they did a stretch and found these cells but they then gave me the 4 cycles of post opp flot chemo to as they put it to mop them up  

Thank you for your reply it helps to know I’m not the only one , I thought I’d be having scans and cameras but I just have to trust in my team  best wishes   Ade

We thought so too as we were led to believe there would be an extensive after care package available at the end of treatment …Things have changed an awful lot within a struggling NHS system and sadly it seems many services have been forced to trim down …We now keep in regular contact with our GP ( every 6 weeks or so) as my husband still has some treatment related issues ..He does his physio at home led by our GP practice physiotherapist …They are  our first point of call if we need anything or even just a reassuring chat …up to now they’ve been very supportive and we are very grateful as my husband struggled with the psychological side of the whole experience but he does seem to be getting better slowly but surely ..regards J  

Hi I had surgery in October and my post op chemo finished mid March. My oncologist did use the word cured which is nice to hear but I am not sure is accurate yet. I have had my first follow up in person which was good as not rushed and was thorough, it was explained to me that due to the radiation they don’t like to do too many scans but they would normally do one after a year so for me it will be in October.  As others have said I believe follow ups will be every 3 months, reducing to 6 months then yearly. They look for signs such as swallowing issues, pain, weight loss, blood, tiredness etc. I believe it is quite normal for most cancers.  

Having said that I had a stretch last week and they found some cells which they are doing a biopsy on I am just hoping it is damage to my stomach and not more cancer.  

• Thanks for reply it really help’s hearing other people’s views, our timelines are very similar, my opp was oct and finished chemo beginning of March although I didn’t have radiation but had a stretch in   December where they found 4 cells so I’m hoping the post opp chemo has got them but they don’t  seem interested in doing a camera or scan just say we will monitor your weight ect and how your  swallowing 

Hi geo I’ve just read your journal what a great idea to do , it’s almost exactly the same journey I took last year I forgot how many appointments you have , so pre opp chemo next ,personally I found it ok just a bit of fatigue and in fact really helped my swallowing , I strongly believe staying positive is the key to getting through this  best of luck