Have I made the right decision

Hi Tafler

Firstly, thank you for reaching out. I can feel your anguish in your message and I understand your feelings. 

1. My situation is slightly different though I had squamous cell carcinoma T2N0M0 at mid-oesophagus in March 2021. I was 53. I had the high strength chemoradiation treatment, no operation - the oncologist and surgeon said that due to the pressures on the hospital as it was peak covid and I had an alternative option available to me, they recommended the high strength chemoradiation. My partner would've preferred me to have the operation to totally get rid of it. At a check up a year later my oncologist said if I'd just been diagnosed then, it would've been chemoradiation and operation.  My tumour had blocked my oesophagus completely so I had a stomach feeding tube and had to syringe Fortisip into it. I was already very poorly before I started chemoradiation and it wiped me out completely. I'm 3 years clear and I'm doing fine. However my oncologist told me initially that it could come back 'more likely than not' and very quickly. I had a gastroscopy with dye every 3 months, and also a CT scan alternating with PET scan for 2 years, now I'm on 6 monthly tests, just gastroscopy and CT scan, no more PET scans. The 'scanxiety' was awful for the first two years as I'd just get over one lot of tests and get the date for the next. I'm very lucky that it's worked for me. But there's also this niggling worry that the affected area is still there. 

I have a 30 year old son who has autism & severe learning disabilities, I'm his main carer. His dad lives 2.5 hours away. When I was diagnosed with cancer, my dad had died a few months earlier, and I was helping my sisters care for my mum, so I put my health issues to one side. I was only able to eat soup & custard for a few months and was losing weight. Plus it was covid times and trying to get a GP appt was a nightmare. Mum died 6 months after my treatment ended. It was a rubbish few years. My son couldn't understand what was going on, he can't communicate but realised I was very ill and not able to eat or drink anything. But we got through it. 

I can't answer about the operation though there are plenty of lovely people on here who can. 

I feel for you having to make this decision.

Keep in touch,

Amanda 

Hi Tafler

I had a total gastrectomy but the cancer team made that decision for me. It was going to be a section removed from oesophagus and use part of stomach to repair however tumour was on part of the stomach on the outside so hence the change of plan. This has made eating more challenging but if the cancer has gone it will have been worth it. Currently waiting for results of scan.

I understand your dilemma but surgery has way more impact on your life and still no guarantees. If it was me I would go for the chemo radiation first but to be honest it shouldn't be you making that decision.

Good luck with everything, I'm in the oesophagal forum regularly if you need someone to talk to 

Best wishes 

Dean

Hi Amanda 

Glad to hear you are doing ok, think we chatted a while ago. Reading Tafler's post I don't think it should be down to the patient to make such a difficult decision.

My surgery was decided for me and yes you have to trust them and I did. Was it easy , no definitely not but when I read other people's posts I realise that I had a tough time but not as tough as others.

Currently waiting for results of post op scan so just hoping the cancer has gone. It is an awful disease but if we all help each other we can get through it.

Hope you are doing ok

Best wishes 

Dean

Hi Dean

I'm going to have to make a similar decision soon as I'm seeing my Oncologist on Tuesday to discuss the results of my recent PET scan. Having read yours and many others stories post op I think that you're absolutely spot on about taking the option of radical chemotherapy as a first line of treatment. Even with the operation there is, as you say, no guarantee that it will not return. In my own case I'm almost 100% certain that my cancer was caused by bad lifestyle choices over many years and to my mind if I can make the right choices from now on then the likelihood of it returning are greatly diminished.

Anthony 

Hi Anthony 

It's so difficult to know why some people get cancer. Lifestyle can be a factor for sure but then young children, even babies get it so who knows why. Think we can all help minimise the risks by being as healthy as we can be but still no guarantees sometimes it's just bad luck

Hope everything goes ok for you

Best wishes 

Dean

Thanks Dean, can I tell you something funny? When I first saw your name Grandad 65 I thought that was your age! Didn't think you looked that old!

Hi Dean,

I think, at the end of the day, it has to be the patient who makes the final decision and signs the consent form for whatever treatment they receive. When I had my first meeting with my consultant post-diagnosis, I was presented with only one option (chemo-oesophagectomy-chemo) so there wasn’t much of a decision to make. At the moment, the pathology following my op indicates that I am now cancer free and there’s some reassurance in that. Does chemo radiation offer the same reassurance? I don’t know. Yes, I know it’s not guaranteed that the cancer might not come back. There are also countless other cancers that I may be afflicted with but for the moment I am focussed on recovering from my surgery and getting back to living a full and active life again for as long as I can. Everybody has to make their own decisions regarding treatment. Difficult and all as the past 9 months have been, I don’t regret the decision I made if it gives me many more years to enjoy life. CB

Hi Dean

I'm good thanks. I read all the messages on these threads and have been following your progress. You have been really informative about the whole treatment plan and life afterwards and I'm sure a lot of people have found it all very helpful. I know how stressful it is waiting for test results, I hope that yours come through quickly and will give you peace of mind.

Take care,

Amanda

Ha ha

No it's the year I was born, although some days I do feel that old

Hi Amanda 

I hope that by being open and honest about my journey it has helped others in the same or similar position. Have always tried to stay positive however hard it gets.

Once I get my results it will be a bit easier to move forward. One thing that is certain is I will appreciate life so much more now and enjoy whatever time I have left to the full

Best wishes to you

Dean