Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Bombshell dropped - that wasn’t expected.....

Bri1958
Posted by
Ive just been advised that cancerous cells were found in my recent gastroscopy biopsies and that there’s evidence of thickening of the Gastro Oesophageal Junction (GOJ) from my CT scan with contrast.
Now awaiting a face to face meeting with the gastro nurses on Tuesday and an appointment for a PET scan....
Clearly, it’s early days for me and my family and without clear information I’m feeling quite terrified.
I’d appreciate any help, guidance and advice that anyone can offer.
Dum Spiro Spero
“While I breathe, I hope”
Zappaman
Posted by

Hi Bri,try not to worry yourself sick you have to wait until all the tests are done before you will get a clear picture of path ahead. It's not necessarily a death sentence, there is many survivors on here including me. If you can eat try to keep your weight up and try to be positive, it really does help. Good luck and kind regards Frank.

Bri1958
Posted by

Thanks Frank!  I’ve started following your journey and posts and found them very comforting.

I got my CT scan results today; T3 N1 M0

So, now we know - step 1....

Sat with the gastro nurses with my wife this morning and I am so impressed with how the NHS seems to be gearing up for me, an outline plan of action discussed and it looks quite swift!

We’re now waiting for a call to let us know when they want to give me a PET scan, and then meet up with the surgeon regarding laparoscopy...

I’m so glad I found the forum

Many thanks 

Brian

Dum Spiro Spero
“While I breathe, I hope”
Zappaman
Posted by

Hi Brian, it's good news for the staging and I hope you have some relief knowing that it has not spread. I was staged T3 N2 M0 and I have done quite well. I meant to say to take a pen and pad to take notes, because there's so much to take in along with the emotions it's easy to forget what was said. I'm really pleased for you and your family that it looks like you will be given a curative path. Feel free to ask anything, there's a lot of people here who are willing to give you information . Good luck and kind regards Frank.

BrentS
Posted by

Hi Brian

Glad to hear you are feeling a little more comfortable about the way forward. Sometimes things will seem to move quite quickly other times the waiting is agony.  The thing is to try to keep positive and get fit. You will need strength and endurance for the journey. There are plenty of people on this forum who have been on a similar journey and now lead a pretty normal life. I recently celebrated 2,000 days cancer free. That’s over five years since my Ivor Lewis. I eat normal sized meals these days.

I don’t suffer any lasting effects from surgery apart from occasional dumping syndrome. (If you don’t know what this is Frank and I can write books on early and late Dumping!) I just need to remember to separate drinking and eating (I need to remember to drink before eating rather than during or after a meal, which is sometimes awkward. 

The coming weeks for you will be full of appointments for tests and scans and meetings so I suggest you start keeping a journal where you can write down questions, their answers and what was said and decided during meetings. 

Anyway good luck and chin up, you’ve still got some living to do. Keep posting-we all want to hear about your progress and we’re here to answer your questions. 

Counting the days, making every day count.

Brent

Bri1958
Posted by

Sounds like very good advice Frank, my head’s been all over the place lately, so some notes would definitely help make sense of things later on

cheers!

Dum Spiro Spero
“While I breathe, I hope”
Bri1958
Posted by

Thanks Brent!  I’ve generally always been a “glass half full” kind of person, although hearing that one word (cancer) is probably the most dreaded term in the English language ...

My family and friends are rallying round, my boss is being really understanding and the advice and support I’m getting here are all contributing to getting me back on track.

It’s marvellous to hear you’ve passed 2000 days - sounds like  it’s a good target for me to aspire to aim for (and beyond)

Inspiring! And much appreciated 

Dum Spiro Spero
“While I breathe, I hope”
Bri1958
Posted by

Latest news today: PET scan appointment received today for Friday morning 

Let’s get it done!

Dum Spiro Spero
“While I breathe, I hope”
Bri1958
Posted by

Well, the PET scan results came back today, my gastro nurse called to say things were a bit complicated and she needed to discuss things face to face to explain....

Took a (very) quick drive to hospital to see her rather than have this hang over us the whole weekend.

It appears that the scan shows hot spots on the oesophagus (expected), but also on the liver and bowel (not).

Our original curative plan from the MDT has changed to palliative only.

Now need a colonoscopy to check whether the bowel hotspots are polyps that have been seen previously some years ago or something more sinister. 

Sadly, the liver looks like it’s a secondary MET to either the OC (probable) or maybe the bowel.

i won’t get a timeline prognosis until I meet the oncologist.

Still keeping a positive mental attitude and preparing for a battle, but I have to be realistic about the outcome 

 

Dum Spiro Spero
“While I breathe, I hope”
Zappaman
Posted by

Bri, sorry to hear about your results. Do not give up hope, wait and see what the full results are. You will then have a better idea of what you want to do. Good luck with the colonoscopy and kind regards Frank.

BrentS
Posted by

Good to hear that you are ready for a battle. The hot spots in the colon are often polyps. You may well find that oncology are quite upbeat about the management of liver mets. You don’t want anecdotes about how well or poorly someone else was or any statistics you need the advice of your oncology team and the will to not just survive but live. 

When will you see the oncologist? Whenever it is I’m sure it will be a difficult wait. So try to stay positive. Don’t sell your record collection yet!

Counting the days, making every day count.

Brent

Bri1958
Posted by

Such a sunny day, we’re taking my 1973 TR6 (planned retirement hobby car) out for a spin with its hood down.  Popping around the Fylde countryside for a while and then meeting up at our son’s house for a bit of a family do in their garden.

Ok the rollercoaster took a bigger dip than expected yesterday but we’re all pulling together and still hoping for the best!

We only met the nurse late yesterday (Friday) so she couldn’t be clear on appointments.  I don’t think the oncologist has any availability next week but they’re pencilling me in for earliest possible appointment.

Also waiting to hear regards colonoscopy 

Dum Spiro Spero
“While I breathe, I hope”
Luv Chox
Posted by

Enjoy the road trip, had to google the car lol, niiice X

The smallest act of kindness is worth more than the greatest intention
Silverfox65
Posted by

Keep strong, keep positive Brian. Sorry to hear your diagnosis - never give up

Best wishes 

peter 

SCANDSA
Posted by

Keep strong and keep positive Brian. every battle is there to be won and roller coasters are there to be ridden, get that hood down and breath the beauty of the wonderful countryside this country has to offer...

Ricky.