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

lou74
Posted by

Hi all 

my dads 71, diagnosed with Barrett’s oesophagus a couple of years ago, end of March 2019 went for routine endoscopy,  and during this they took 9 biopsies   

He received letter to go for a CT scan, and to see consultant the next day, and was diagnosed with oesophageal cancer 30th April

went for PET scan 10th May, and got results 14th May, cancer hasn’t spread, thank goodness 

Hes being today for an exercise test to see if he’s fit enough for the operation and they’ve said he is and he’s a low risk 

so now we’ve got to see surgeon next Tuesday and oncologist on thursday

my mum had cancer of her duodenum and died aged 61, in 2010 and they couldn’t do anything for her,so I’m hopeful about my dad. 

Anyone whose had the operation would be good to hear your experiences etc, 

louise x x x x

ChrisW5
Posted by

Hi Louise,

I had an Ivor-Lewis oesophagectomy just over 7 weeks ago. I can share a little but about my experience, I'm half the age of you dad though so my recovery may be a bit different/quicker. Also, keep in mind different hospitals will do things differently. 

A couple of weeks before the surgery I had a clinic appointment during which the surgeon took me through what they were going to do and the potential complications. The surgeon and the specialist nurses were fantastic. They really took the time to explain everything and answer any questions I had. I was given an incentive spirometer to practice using before my surgery and a special high energy powder to drink the day of my operation. 

The operation itself was pretty much an all day thing. They said it would take 6-8 hours but I was in there for about 10 hours. After recovery I was taken to ICU. They warned me and my family that there'll be a lot of tubes in me when I woke up and not to worry as it was normal/expected. They were really good about pain management and had dedicated nurses that would check on your pain levels. I wasn't pain free but they absolutely did there best to help manage it. They were also really eager to get you moving or at least sitting upright as soon as possible. The first few days / week it took a lot of support from physios and nurses but they had me sat out in a chair for at least a few hours a day from the first day after my surgery.

I was very lucky that my only complication was a minor wound infection about a week after my operation so my care was stepped down quite quickly. I was only in ITU for a day and a half after which I was transferred to a high dependency unit. That wasn't 1-2-1 care but there were still a lot support per person. I was there for about 4 days after which I spent another week on a normal ward.

Not being about to drink for 2-3 days so horrible, it gave me such a sore throat. If that happens to your dad make sure you tell the nurses. I was given a numbing/soothing throat spray which really helped. It's fair to say that your dad should let the nurses know about any discomfort or issues that he has after the surgery as they might be able to help in some way.

Make sure you let the hospital know if he has any dietary restrictions. I'm lactose intolerant but didn't think to tell them. When I could eat again towards the end of my stay I was only allowed pureed food and because I was lactose intolerant the only thing on the menu I could eat was the pureed shepherds pie. No breakfast cause there were no options for me and pureed shepherds pie twice a day almost drove me mad. 

He'll see loads of different specialists during his stay, consults, various specialist nurses, physios and dieticians. All the staff were great at my hospital and did there best to support me and answer questions I had along the way. 

I hope helps and I'm happy to answer any other questions you might have.

Kind regards,

Chris

lou74
Posted by

Hi Chris,

Thank you for responding and sharing your experience with me

having read to your post, I now feel a little more knowledgeable on what to expect, know my dads twice your age and will be under different hospital, doctors, surgeons but it’s really helped so thank you

Where in England are you? My dads going to under the surgeons at St James, Leeds. 

Have you had to see an oncologist? Are you going to have to have chemo? Radiotherapy? 

How long after seeing the surgeon did you have your operation?? 

My dads going to see the surgeon on Tuesday so hoping we’ll find out more then and get a date for his op.

All the best 

louise

Silverfox65
Posted by

Hi Louise 

Welcome to the forum

Sorry to hear about your dad's diagnosis. The positive thing is that his condition has been recognised and is being treated.

I'm just over 18 months post op and feeling stronger by the day.

I was totally shocked and unaware of this condition until I was diagnosed , post op and treatment with the great help of my daughter we put this blog together in a bid to help others.

myoesophagealcancerjourney.wordpress.com/

Best wishes to your Dad. Feel free to ask any questions at anytime.

Good luck on your journey and don't take it alone. There are some great people with great personal experience and advise on here

ChrisW5
Posted by

Hi Louise, 

I'm in Manchester so my treatment was split between two hospitals, Salford Royal for diagnostics and surgery and then the Christie for my oncologist and for chemo. I had 4 rounds of FLOT pre-op and about about to start another 4 rounds FLOT now I've recovered from my operation. I didn't need any radiotherapy and I've been really lucky to have a good response to chemo. I went from T2N3 to ypT0N0 after surgery. That doesn't mean there aren't any cancer cells left just they couldn't find any but post-op chemo should hopefully clear anything left behind. 

I had about 3 weeks between seeing the surgeon and my surgery date. I also had an appointment to see the anaesthetist before the surgery. They took we through how they would monitor me, the special ventilation requirements and some info about the epidural they'd place to manage pain after surgery.

Best of luck to both you and your dad on Tuesday. 

Kind regards,

Chris

BrentS
Posted by

Hi Louise

Sorry to hear about your dad - and your mum. You are probably anxious. But the fact that it looks likely that he will have surgery is a good sign. You need to be pretty fit and strong to make a good recovery which is why they are so selective.

My surgery was over five years ago but the procedure is largely unchanged. In fact they have been performing the Ivor Lewis op for over 50 years. They are now placing greater emphasis on post op quality of life, which is really good to hear. Not that I suffer any real problems and live a full and happy life, fully integrated with friends and family.

Earlier posts have described the process pretty well and it doesn’t differ much between centres. 

So be positive and supportive and try not the worry too much. Positivity helps cope with chemo and aids recovery from the surgery - it’s a fact!

Counting the days, making every day count.

Brent

lou74
Posted by

Hi guys,

firstly thank you all for responding, given me a lot of info which had been very helpful 

Good news,   went to speak with the surgeon and he’s offered dad the operation 

got to have 4 rounds of chemo beforehand, and they’re gonna speak with the other local hospital to arrange the chemo and then after that’s done, next will be the op, feeling hopeful  having spoken to the surgeon and the upper GI nurse specialist 

louise x x

lou74
Posted by

Hi Silverfox

thanks for your reply,

I’ve looked at your blog , what a great thing to do, It really helped answer questions I had etc and it will definitely help others.

Dad and I met with his surgeon Tuesday and he’s offered dad the operation, so first is chemo 4 rounds over 8 weeks and then the op. 

Feeling hopeful at the mo, and  know we have a long journey ahead of us, but we’re ready for this. (Well as ready as we can be) 

louise x

Silverfox65
Posted by

Hi Louise,

Thanks for your kind comments. 

You are in good company here with some great members only too happy to help others. Don't do the journey alone - ask anything anytime. It will be a bit of a rollercoaster but as Franks says this whilst a major operation is tried and tested 

Best Wishes to your Dad

Peter 

Angelica3
Posted by

My dad had the Ivor Lewis at St. James’s hospital in Leeds 4 weeks ago, the surgery took 14 hours and unfortunately they put a hole in my dads windpipe whilst undertaking the operation and my dad also had a leak at the join in the upper chest but didn’t know what until his swallow test 7 days later and that was when things went downhill. He was nil by mouth for 4 weeks, then didn’t know how to treat my dad to save him and in the end my dad succumbed to the complications he fought for 4 long weeks to stay alive as he didn’t want to die he had too much to live for.  My dad really suffered and all he wanted was a drink of tea but he wasn’t allowed because of these holes but he had to sit on the ward and watch other patients eating and drinking.  They also damaged his voice box whilst doing the operation so he could only whisper which made it really hard for him.  I hope your dad goes on ok. Make sure you do your research on the surgeons undertaking it. My dad never saw the surgeon who did his operation again all the time he was in hospital it was some other consultant who to be quite honest had very little compassion and was too much to the point for my liking. I am sorry to inform you of this but I could not just ignore it. Things are still very raw for me as my dad died yesterday and he shouldn’t have.

BrentS
Posted by

Angelica

I am so sorry to hear about your dad. I don’t blame you for feeling raw, angry even. But a 14 hour operation is a clear sign that the surgery didn’t go to plan and that there were real problems. Surgeons in general don’t have the best bedside manner and are rather short on empathy. There is a chap in my Maggie’s group whose voice box was damaged during surgery and can only whisper.

i hope the pain gets easier to bear as time gets on, but you’ll always miss him and feel cheated I’m sure.

Counting the days, making every day count.

Brent

lou74
Posted by

Angelica, I too am very sorry to hear about what your dad and you and your family have been through. 

My dads treatment plan has now all turned on it’s head 

having being told initially after scans, exercise tests etc etc that dad was fit enough for surgery they’ve now said he isn’t and it’s to do with his kidneys...

my dad has being under the renal doctors for 2 years as we knew he’s kidneys weren’t great but didn’t think this was a big problem as they offered chemo and surgery and they know what they’re dealing with, and look at medical history...right??? WRONG

The whole MDT team for 2 hospitals didn’t obviously look at my dads medical history they just went straight in and offered this treatment and gave hope to then snatch it right back

to go to see the oncologist thinking we’re going to meet to discuss start of chemo to be met with sorry I’m not prepared to give chemo and the surgeon will not operate was like a punch in the stomach 

I, as you can imagine was angry,upset and totally and utterly appalled at their lack of communication between each other, how can surgeons, oncologists, nurses etc etc meet every week for an MDT meeting and NOT discuss someone’s medical history BEFORE offering treatment???  How do they think this effects someone mental health, the patient and their family???

i really feel strongly about putting a complaint in, not that I will probably get very far 

at the moment feeling let down and angry