New to the group

Hi!

My father in-law had the same diagnosis and operation about 15 years ago. No symptoms, it was caught at a very early stage, and he had an operation to remove his oesophagus. It was an eight hour long operation using minimally-invasive keyhole surgery, which moved his stomach up into his chest. He also had no symptoms at the time - with oesophageal cancer by the time symptoms appear it’s usually too late. 

He was 70 at the time, spent a few weeks in hospital right after the operation, and it took him about 6 months to recover fully. Every case is different, of course, but in his case a lot of the lifestyle changes he was told would happen didn’t quite apply. He found he had no trouble swallowing or eating normally, could go swimming with no problems, and could lie flat as long as he didn’t lie on his right side. The cancer never returned, and although he did die of cancer 12 years later, it was unrelated prostate cancer. My father-in-law never regretted the operation,  felt incredibly lucky that it was found at such an early stage, and spent the last decade of his life backpacking around Asia and his lifestyle was only minimally impacted over the long term. 

Thank you so much for this information. I find it really helpful and reassuring. I am so glad to hear that the operation enabled your father to live so well and with so little impact to his life. I was particularly pleased to hear about the swimming as swimming is a big part of my life.  Many thanks for your swift reply. It gives me courage. 

Thanks so much for this question and reply. I am also new to the group. This is my first post. I have been diagnosed with High grade dysplasia (pre cancer cells). Following advanced gastroscopy my oesophagus tore and I had to have 5 clips.  Following MDT I was told my oesophagus would not be able to stand EMR and the way to treat would be removing my oesophagus.

I realise I am lucky to have such an early diagnosis but I'm absolutely terrified not only of the surgery but how it will affect my quality of life 

This reply was so helpful and gives me hope for the future.  So thank you so much.

I go to see the surgeon on Wednesday to discuss the operation and it's looking like it will be very soon 

Good luck Jac for your surgery .

Any other advice from others who have had this surgery would be greatly appreciated 

Hi BM59, a sad welcome to the club. I'm heading in the same direction I think. Got to see oncologist on 5/6 to see what's on the cards next. Just dealing with it one step at a time. Waiting is the biggest worry for me. 3 weeks to see surgeon for staging laparoscopy now a month to see oncologist. Why they don't just put you on chemo as soon as they find it I don't know.

Good luck with the surgery and your recovery after. Keep posting as those of us that follow get some idea of what's coming.

Hi ..Sorry to hear you’re in this situation ..A different scenario to yours but my husband had an esophagectomy in Dec ‘22 ..the top of his stomach and two thirds of his oesophagus was removed as well as numerous lymph nodes and tissue around the surgical site (resection margins ) ..No complications and he spent three days in the critical care unit and came home after eight days ..He had an epidural whilst in hospital so he had minimal pain whilst he was in and could cope with only paracetamol when he returned home ..He takes meds to reduce his stomach acid twice a day and was given a variety of meds for nausea and diarrhoea but he doesn’t need them now …Tough recovery dealing with the weakness and fatigue afterwards but it is only to be expected with any major surgery ..Trying to deal with the new eating regime takes a bit of time too as we found it’s trial and error regarding portion sizes to avoid over feeding and regurgitation..and balancing sugars and fats in an attempt to reduce the dumping  episodes ..they’re not very pleasant but they tend to reduce as time goes on ..He also says the sensation of his new anatomy feeling like a ‘swinging pendulum’ in his chest when he turns over in bed takes a while to get used to ! He still has a JEJ feeding tube which is fitted into his duodenum and we use this to top up all his calories and nutrients as he still hasn’t much of an appetite but it is improving gradually ...He has gained the majority of his weight loss so the tube may be  removed at some point soon ..He’s had the JEJ for ten months now but some only need them for a shorter period of time and some don’t need a feeding tube at all …He's now five months on from surgery and I would say he’s 90%  recovered from the surgery but unfortunately he still has issues from the chemotherapy he had pre surgery and post surgery .It’s safe to say he found the chemo harder to cope with than the surgery ..He’s 65 and this was the first surgery and major illness he’s had in his entire life so it did come as a big shock to his system and he’s struggled physiologically with the whole experience…he does seem to be getting better though as time goes on and our GP has been very supportive .… He’s been very fortunate that the treatment and surgery worked well in treating his OC ..(Treatment for this type of cancer has come a long way in the past decade)  …Although it’s been tough going for him he has said recently he’s now satisfied he took the surgical route …Everyone is different and some bounce back quicker than others so this is just his experience  and may not be the same as yours or anyone else’s…..Wishing you well for the future …Regards J 

What a  good insight  of whsts to come for some of us . Me personally its given me hope to hear how he is coping with post Op . Is he amymore Chemo post op ?

Hi ..He had two post surgery FLOT chemo cycles out of a scheduled four ..It was halted after the second cycle as his body began to show the strain and both he and his oncologist decided it was the best option to settle for just two cycles to avoid any more detrimental affects to his long term recovery ..His oncologist told us the two he’d completed had gone a long way in reducing the risk of a recurrence and he and a lot of oncologists regarded the post surgery chemo stage of treatment ‘not as important’  as the first two stages and in his words ‘A little is better than none’ .. Of course opinions vary and this was just his opinion …The last  cycle was at the beginning of March ..My husband now walks with the aid of a walking stick as his leg joints have been affected the most ..However this may be temporary as physio is still ongoing ..Considering he’s been through six gruelling months of debilitating symptoms which started Feb’22 whilst going through six months of gruelling diagnostic procedures including three admissions into hospital ….followed by seven months of treatment consisting of four pre op  FLOT chemo cycles which completed in October last year ..six weeks later in December the major surgery and then the post op chemo ending in March (13 months in total ) I’m amazed his body has coped the way it has..It’s been a rollercoaster of a journey that’s for sure and very challenging for him …We are however very grateful for everything that has been done

..Just to add and I don’t wish to cause anyone any concern as it was under very different circumstances but whilst dealing with all this my husband lost one of his friends to OC just prior to him becoming ill himself ..So as you can imagine this didn’t help him psychologically at all ..I’m not saying in any way his experience has been worse than any other OC sufferer though as it’s a challenging experience for everyone who has been affected by this terrible disease and every experience is different .

Hi Geoferret

Thanks for your response.   It helps to know I'm not on my own in this situation.  As with you I'm just trying to take one day at a time.  I'm hoping to have a clearer picture after speaking to the surgeon   I will definitely keep posting.   It helps to share experiences 

BM59 

You'll never be alone oncthis site always here for you help and support  each other through our journeys 

Hi J

Thank you so much for your reply.  It has been so helpful.  As I have no actual cancer as yet  just high grade cell changes,  no chemo has been mentioned so far and its straight to the surgeon.  I've been very lucky that they seem to have caught this now so I am hoping avoiding chemo will give me a head start with my recovery.   I'm still in total shock and dont mind admitting I am terrified but trying to take each hurdle as it comes and it really helps to know that even though it's been  a very tough journey for your husband he is doing so well. Hope he continues to improve