Hi Greencarpet, I just wanted to wish you well for your treatment and I hope you get a plan from your team soon. Hopefully someone with a similar diagnosis will be along to offer practical advice. I have read several threads on this forum where treatment has given very good results xx

Hi GreenCarpet

I'm really sorry to hear about your diagnosis, someone very close to me in my family is going through a similar ordeal. I'd offer a few suggestions.

Firstly I'd ask the doctor about the chemo regime you're going to start for this (pending your biopsy). The ones generally used are FOLFOX (two drugs) or FLOT (three). Given your age you may want to think about FLOT even though the side effects can be pretty bad.

There really are some success stories out there for people who respond well to chemo, despite size or stage. I also recommend that you ask about mismatch repair, PD-L1 status and HER2 status from your biopsy as this will inform your plan (but most doctors do this now as standard). I think radiotherapy is used generally for upper or mid oesophageal tumours and possibly why your doctor didn't recommend it, although if your PET indicates it's higher up too, you may want a second opinion. You may also benefit from getting a second opinion generally, just to be sure that your current doctor is offering the best advice for you. 

I wish you the best, please DM me if you feel like you want to. And don't give up hope, this is an awful disease but there are people who have come through it. 
 

Giving my very best to you and your family xx

Hi Greencarpet,

So sorry to read about your diagnosis. I was given a similar diagnosis and a scary prognosis in 2013. This was an unexpected outcome and I wasn't expecting to get more than a couple of years extra due to chemo for several years. I was unwilling to plan more than a few months ahead for most of that time.

Apparently your chances of survival are increased if you are relatively young (I was 55 but most diagnoses are given to people over 70) and physically fit.

In my case, surgery and radiotherapy weren't options because the cancer had grown outwards from my gullet and around my aorta. It would be worth asking your consultant why radiotherapy has been ruled out at such an early point of your treatment. 
 

Good luck!

Dave
 

Thank you everyone for your replies. Today I met with the ENT consultant to discuss the plan for the stuff going on in my neck.

Despite what the GI consultant told me last week, the ENT consultant told me that there was a chance that the stuff in my neck could infact be swollen lymph nodes due to an infection as opposed to cancer. 3 days prior to the PET scan I had oral thrush, high temperature and stomach infection which cleared up after a course of antibiotics. This of course is all subject the biopsy results being taken from my neck but this has given me a glimmer of hope that the cancer has perhaps not spread up this far nor is it another primary cancer such as lymphoma.

It's going to be a long few weeks until I get the biopsy back but just wanted to share that I received some not so negative news for once.

That's very encouraging news Greencarpet - certainly a glimmer (maybe more) of hope there xx