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.

Dad newly diagnosed

Lct500
Posted by

My dad has just had an endoscopy today and been told he has oesophageal cancer. Feel like my world has fallen apart. He’s had problems with reflux for a few months but has been fit and well other than that. Not sure of the staging-he has a cat scan on Monday....dont really know many details. Just completely shell shocked. I’m a pretty pessimistic person at best of times so I’m going through a whole series of scenarios in my head.... 

simpo054
Posted by

Hello Lct500, I'm sorry to hear about your dad's diagnosis. I went through Oesophageal cancer 10 years ago, and I'd like to be there for you if you think it would help you and your dad. 

All I can promise is information about my cancer journey and what helped me, and honest advice for you. 

I was diagnosed with stage 2 Oesophageal cancer.

I hope to hear from you.

Simpo054

BrentS
Posted by

Hi LCT

sorry you find yourself here. Oesophageal cancer is not necessarily a death sentence. That’s the first thing to grab hold of. So hopefully if you can do that that puts your pessimism aside. So that leaves how bad the treatment is going to be. But you say your dad has been fit and well which is brilliant. No obvious symptoms probably means early days and surgery is a real possibility.

In 2013 I had the same diagnosis, and it knocked me and my family sideways, so I know how you are feeling. You are probably feeling worse than your dad. But six years later we are all still here (plus two new daughter-in-laws and three new grandchildren), loving life and looking forward to many more years together.

So don’t give up on him or start grieving. Positivity and support is what he will need during the coming weeks and months. 

Counting the days, making every day count.

Brent

Lct500
Posted by

Thank you for replying, I really appreciate it. What symptoms had you been having, and for how long? What treatment route did you go down? 

Lct500
Posted by

Thanks Brent, I really appreciate you taking the time to reply to me. We’ve definitely been knocked sideways-I think we thought it was an ulcer or a hiatus hernia, something like that. Never cancer (I guess you never think it will happen to you do you). I just can’t begin to imagine how difficult the road ahead is going to be. 

simpo054
Posted by

Hi Lct500 - was this for me? (Simpo054)

If so, my symptoms were intermittent dysphagia (difficulty in swallowing) which I thought was probably a hiatus hernia. I eventually saw my GP who referred me for an endoscopy. This resulted in the diagnosis of Oesophageal cancer, then CT scans, ultrasound scans, PET CT scans a laparoscopyand then treatment - 9 weeks of chemotherapy, then surgery to remove the whole oesophagus and 10% of my stomach.

My oncologist said that the surgeon said he'd got it all, but he'd like to give me more chemotherapy to make sure (another 9 weeks). 

That was 10 years ago!

Happy to talk more if you'd like!

Simpo054

Zappaman
Posted by

Hi Lct, sorry to hear about your dad. You are probably in shock and it takes time to sink in. For me it was like watching it on TV, then suddenly realising oh s**t this is me this is happening to! As Brent and others have said it's not a death sentence and hope is your friend. Tell him to write down any questions he has prior to appointments and to write down the answers. Good luck and kind regards Frank.

Lct500
Posted by

I keep thinking it can’t be real as cancer always happens to other people doesn’t it....this year we’ve lost my uncle and aunt to it along with my husband’s aunt...hence the pessimism as there were no positive outcomes with those...Thank you for sharing your positive stories though, it has helped. 

we’ll get more info i guess on Monday; the specialist nurse at the hospital is ringing him...I’ll update when I know more.

George-Mildred
Posted by

Hi Simpo054

my husband was diagnosed with t2nom0 oesphagus cancer. It was a late diagnosis because they misplaced his endoscopy report!! Anyway moving on from that as it makes me so angry. I hope you don’t mind me asking but did your chemo shrink your tumour before you had the operation?  My husband starts chemo on the 9th January 2020. But because of the lost report as you can imagine we’ve no confidence in the hospital. I’m worried that the chemo won’t work after the 9 weeks then they will tell him he can’t have surgery. I’m keeping my fingers crossed that if it doesn’t work then he will still be at a stage where he can have the operation. My husband had his first endoscopy on august 10th and it will be 5 months to the day that he starts any treatment. All of his scans show that it hasn’t spread YET!! many thanks

Judy 

BrentS
Posted by

The chemo certainly shrank my tumour drown from t2n0m0 to t1bn0m0.

so please, don’t lose faith in you husbands clinical team. You HAVE to be positive. It will have an effect on treatment.

Counting the days, making every day count.

Brent

George-Mildred
Posted by

Thank you for replying Brent. We will try to be more positive in future. 
Judy xx

Lct500
Posted by

Hi judy

what symptoms had your husband been having and for how long for? 
Lori 

George-Mildred
Posted by

Hi Lori 

my husband strangely doesn’t have any symptoms. The only reason he found out he had it was because we booked in for a colonoscopy and they just did an endoscopy at the same time. Good job they did as we would be none the wiser that he had it. 
Judy