Results so far

Hi

I had the same staging. My swallowing difficulties weren't too bad and sound similar to yours.  I found rice was something I couldn't eat because even if I chewed it well, it seemed to gather. 'Dry' foods like meat without sauce,  for example, were also tricky. I found eating slowly and chewing well as well as eating food that had sauce were helpful. I found that swallowing and my appetite improved after the second round of FLOT chemotherapy which I took as positive sign that the tumour had reduced.  A later CT scan found this to be true.  I do know of others who needed a feeding tube when they really struggled to eat. I think a lot depends of the size of the tumour and where it is in the oesophagus. 

Wishing you all the best for your journey. 

Thanks Suzie, since my post i have been informed i will be having a laparoscopy then chemo, the good thing is the PET scan imaging shows there has been no spread.

Hi,

Each step that comes up positive the better. So pleased for you that PET scan said no spread. The laproscopy will take sample of the abdominal fluid plus take measurements for surgery. I just want to say that the surgery is major but the recovery is much quicker than you'd think. I say this even though I had some complications.  The start of this journey is scary as it's a whole new world. I find it second nature now. I just want to say that things are much more hopeful than it feels at the beginning of the journey.  I suggest you plan in nice things as this cancer journey can be so all consuming. It seems obvious, I know but it takes effort.

Take care.

I have a clearer picture now of what to expect, meeting with surgeon, then laparoscopy followed by a meeting with the MDT to discuss the treatment plan after the biopsy results and possibly chemo with further surgery if required. Thanks for the info Suzie and words of encouragement.

Hit a bit of a barrier now. After meeting with the surgeon they are not happy with my lung function and now have to see an anethetist for further tests. If i am considered not fit enough for surgery then all i can be offered is palliative chemotherapy which is not the outcome i was hoping for.

Well, since my first symptoms in December 2022 i was pleased with how things quickly progressed only to be faced with a setback. After my cycling lung function test it was decided that i was not able to undertake major surgery so now have an appointment to see an oncologist next week Friday 5th May 2023 to discuss treatment which appears likely to be chemo/radiotherapy/chemo and possibly a PEG tube as i can't keep food down. Made a list of questions to ask but does anyone know if i will be able to continue normal activities during treatment ?

Hi. I have been reading your story. I too was worried about the results of my bike test but was told I had passed it ok straight away.

So sorry to hear you may not get surgery. Is there any possibility if the tumor shrinks after chemo, that you can get fitter and re-tested for surgery later on?

I'm just sitting in the hospital waiting room getting ready for staging laparoscopy later this morning.

Keep posting. Best wishes and good luck.

Good luck with your laparoscopy .. 

Hi, my lung function is less than 60% that's what 40 years of smoking does for you ( i gave up 8 years ago) so sadly at the age of 74 i am never going to have the lungs of a 24 year old again. Just hoping targeted radiotherapy along with chemo will give me a fighting chance. Good luck with your laparoscopy.

I see, your a little older than me. I'm 68 later this year. I was a 40 a day smoker but gave up 24 years ago. I'm very overweight though so struggled on the bike to get to the end. Also had a blood clot in my lungs a few years ago so was very worried I wouldn't be fit enough.

I'm very positive about my cancer which I've named Basil by the way. You should be too I'm sure the treatment being offered is in your very best interest. I obviously want to have Basil removed but the thought of what they have to do to get him is a bit daunting. 

Keep positive. I'm sure you'll be fine. I'll race you, see who gets better first...lol