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.

To have or not have the operation

Ellie-M
Posted by

a family member has tumour located at bottom of oesophagus/top of stomach, has spread to lymph nodes but not to vital organs.  He has had three chemo sessions and has now been offered what can only be described as horrendous surgery.  He says he doesn’t want the surgery as he will have no quality of life.  He is 52.  The consultant was very brutal in the delivery of what the op entailed we began to think he didn’t want him to have it.  He has a couple of days to make the decision.  Can I have people’s opinions on the op please is it worth the effect it has on quality of life.  Thank you My family is very distressed.

Sbt123
Posted by

Have it. It’s no lie, it is awful. It’s a massive long operation. It takes months to get over. Every day he will be reminded of it, ie. he won’t be able to eat like he did before, he may get symptoms after eating, he won’t be able to lie flat in bed due to reflux and have to sleep propped up on pillows. My dad had it January 2015. A year later he was playing a bit of golf again. He even installed a new central heating system. He was 69 when he had his op. There is life after the op. A good life. The alternative doesn’t bear thinking about.

but it’s not me that’s got to make the decision. It’s him. Good luck!!

sarahxx

Graeme77
Posted by

I had it. I ended up getting a total gastrectomy which is full stomach out with a tumour in the same place. 6 months later the cancer came back. 13 months later in still here and stable on immunotherapy and despite it coming back quickly I don't regret getting the op for a second. I was blending curries to be able to eat them and it was only getting worse. I shudder to think whta my quality of life would be like now had I not had it. Actually, I'd probably be dead. 

I can eat what I like (smaller portions) and every meal and sip of water isn't a chore.

Finally, the brutal truth is that you will die of this if you don't have the op. If you do, you might get many more years. No op = death. Sorry to he so blunt but that's the truth you need to think about. 

Zappaman
Posted by

Hi Ellie, I think they often make it sound really hard going to have the surgery so that you are under no illusions that it's going to be easy. The staging I had was T3 N2 M0 which meant that It had spread to local lymph nodes and the tumour was in the same place as you described. I was 57 years old and had been a smoker for about 45 years. Sure it's a big operation and it sounds scary but it is well worth it. I'm very happy with my quality of life, I eat well and when I occasionally go for a drink i can have 10 pints of beer and some Jack Daniels. I would be happy to speak with him if you want to message me. I am enjoying life differently but food dumping problems are minor. Tell him to be positive and focus on getting through the surgery, it's worth it. Kind regards Frank.

P.S. he should do it.

Zappaman
Posted by

Hi Ellie, I think they often make it sound really hard going to have the surgery so that you are under no illusions that it's going to be easy. The staging I had was T3 N2 M0 which meant that It had spread to local lymph nodes and the tumour was in the same place as you described. I was 57 years old and had been a smoker for about 45 years. Sure it's a big operation and it sounds scary but it is well worth it. I'm very happy with my quality of life, I eat well and when I occasionally go for a drink i can have 10 pints of beer and some Jack Daniels. I would be happy to speak with him if you want to message me. I am enjoying life differently but food dumping problems are minor. Tell him to be positive and focus on getting through the surgery, it's worth it. Kind regards Frank.

P.S. he should do it.

HCLS
Posted by

I agree Frank, he should definitely gave the operation Ellie.

There are so many positive stories.

They told dad the treatment plan in these terms..

”we are going to poison you, then hit you with a bus, then poison you again”.

Turns out the description was pretty apt but dad would now not change a thing. My dad is now 80 and recently helped my sister rewire her new house. He has done so many holidays with mum and he is full of energy.

Take care Hannah x x x

BrentS
Posted by

I had the same experience with my consultant; very blunt and brutal. But that’s surgeons for you!

Never forget that surgery is the best if not the only pathway to a cure... to be cancer free.

All the advice you have been given here is sound. The surgery is major. It takes a good while to recover and a new normality took about two years to establish in my case. But it is five years next month since my surgery and I am enjoying a good quality of life.  I have holidayed more than most people (I’m in Australia at the moment). I eat what I like and enjoy a few beers.  I try to keep fit and keep the paunch inder control  

This time Five years ago I was not sure if I would see my son’s wedding the following June. Five years on I have just enjoyed my younger son’s wedding in Australia. 

So he should never give up. There is a good life to be had after Ivor Lewis (the name of the horrendous surgery). 

52 is young, so he has youth on his side - most of us were a few years older than that when we embarked on this journey. 

Keep posting. Start a new discussion and ask for answers to specific questions and worries you might have. There is a wealth of experience on this site. 

Counting the days, making every day count.

Brent

HCLS
Posted by

I love seeing the replies from Frank, Sarah and Brent.

Ellie, these guys are amazing and to hear the positive stories should give your dad hope.

My dad never went on this site but I used to read him the replies.

Maybe let your dad hear these and it might give him hope.

I know my dad spoke to several people at Broomfield re the surgery when they were unsure. I think they looked at dad and thought if he can do it I can!

 X x x

KevRover
Posted by

Hi Ellie, please allow me to add my two penn'orth...

I was a very similar age to your relation at 49 when diagnosed with OC (tumour and staging same as you describe).

This was in January 2016

I had the 3 x pre-op cycles of chemo followed by the nine hour op to remove the tumour, (July 2016) followed by further chemo to "mop up"

In my case it was the anaesthetist rather than the surgeon who gave us the "brutal" description of the op and it's ramifications; I remember coming out of that particular  meeting being quite shaken up, however I can honestly say that I am now fitter( in mind and body)  than I have been for many years; there is a  "new normal" that has to be addressed post-op, but as others on here have said, that change quickly comes about and I can eat/drink relatively well (as 3 pints of Trapper's Hat pre-dinner on Saturday just gone is proof!!) My quality of life is excellent, was back at work fulltime as of October 2016 and am still playing footy (badly) twice a week...

For me it was a "no-brainer" and not once did I consider not having the op and am so glad about that, as are my family and friends.

My advice would be..."GO FOR IT!!"...after all the alternative is not so appealing xxx

Liam007
Posted by

I agree with Sarah, my brother went through the surgery, he was as hard as nails and tried everything with 200% effort, after the surgery he said to his surgeon “I knew it was going to be hard, but that was brutal” he struggled like everyone does with eating and everything else that goes with the surgery, however he would talk to other newly diagnosed people and would always be so positive about having the surgery, xx

Zappaman
Posted by

Ellie, I forgot to mention that he may be in shock and a bit scared. I think I was, I remember telling the consultant that I wasn't having any treatment. He said he wasn't listening to me as most people say that. Tell him it really was worth it as i would not be here today if I didn't have the surgery. Life is good and every day is a bonus. Sending him positive thoughts, Frank.

Bev18
Posted by

Hi Ellie

My name is Bev (55) and like some of the others on this discussion have been diagnosed T3 N2 M0 back in Sept 18 and I go into surgery on Friday the 18th, I too had it described in the most blunt of terms by the registrar and ended up having a melt down in the room only too sound like Stan Laurel through the tears when i was asked any questions...excuse the humour but after i calmed down and reflected my outburst it was the best way of describing my behaviour..ha ha.

For me there is no question about having this operation i want to be here for a good few more years yet i love my life and have some fabulous support from family and friends that are all rooting for me just as you are for your family member. The being scared is natural and yes the question you ask yourself over and over again is about quality of life, but this decease will deny us that if we don't do as the experts advise.

I have found immense comfort form others on this forum about the before and after and their new journeys. I want to be part of that and share my journey going forward.

I wish you the very best of luck in what ever the decision. 

Anon613
Posted by

Hi Ellie-M,

I had the operation (Ivor Lewis) at the end of August 2018 aged 59. It is major surgery, but the pain management in my case was excellent. I can confirm this because my pain management drugs ran out when I was moved from the ITU ward and it took the nurses (on a different ward) at least 45 minutes to replace the Fentanyl and Lidocaine pumps. I did go into shock with the pain. But they did break one of my ribs gaining access. Pain is only temporary, cancer isn't. I would not hesitate giving consent for the surgery even if I knew they were going to break one of my ribs and stop pain management for at least 45 minutes 48 hours after surgery. 

Anon613
Lay55
Posted by

I had this op in may last year after being diagnosed with t3 n0 m0 at broomfields Essex I was told I would probally die on the table but I still went through with op I was 54 and weighed 16 stone  I was also told this op was brutal but I knew it was the only way forward for me.The op took 9 hours which was on a Tuesday I went to hdu till Thursday and then was moved to a normal ward I had the swallow test Friday was eating and drinking Saturday and I went home Monday night so I was only in hospital 6 days (I had keyhole surgery ).I was not told much about what the op entailed but when I knew I was having the op I made sure I read and understood what was happening to me which I found a helped with my recovery. As for my recovery I have had very little in the way of after effects I have had only one eposide of dumping and I was getting reflux which I found out the culprit was cheese.  I do sleep normally in bed I have lost 4 stone it weight which I feel better for. as for eating now it is all good apart from bread and tough meat I do eat 2000 cals a day and my weight has stabilised. so what I would advice is find out about the op  and with full understanding the recovery will be much easier.

I did have 70% of stomach and food pipe removed