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.

ENDOSCOPIC MUCOSAL RESECTION

Jenny1308
Posted by

I was diagnosed with oesophageal cancer on 13th August (my 70th birthday). I always imagined finding out I had cancer would be in a cozy room with a Macmillan nurse sitting in the corner awaiting my tears! How wrong could I be! I was called back to the hospital for a “further endoscopy” when the nurse casually mentioned LITERALLY OVER HER SHOULDER AS SE WALKED TOWARDS THE CONSENT SIGNING ROOM....”YOUR HERE TO HAVE THE CANCER REMOVED”! You may imagine I was a little taken aback!

jumping ahead and I’ve now had an EMR procedure carried out a week ago but I still can’t eat solids. Am I being an impatient patient but everything I’ve read says to start eating solids after TWO DAYS!  Am I right in thinking the EMR can actually narrow the gullet even more ... does that mean swallowing will always be painful?

I don’t know yet, but it’s a possibility they’ve got it all, WOW won’t that be nice, if not I’ve got the three choices I’m sure you’re all aware of.

sorry for the long post. It’s my first time on here and I’ve got so much buzzing away in my head. Really hope someone can answer me with REAL as opposed to generic responses!

my very best wishes to everyone suffering from this horrible illness

Jennybell
latchbrook
Posted by

Hi and a warm welcome to the online community

I'm afraid I'm not going to be the person who can give you real answers as I'm not a member of this group but I noticed that your post had gone unanswered. By replying to you it will bump it back to the top of the page where hopefully someone in this group will be able to share their experiences with you.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

BrentS
Posted by

I’m sorry no one has been able to share with you any of their experience but most people here have had a different sort of oesophageal cancer, an adenocarcinoma. Your cancer was a probably a squamous cell carcinoma, and it was obviously caught very early, probably after an earlier diagnosis of Barrett’s Oesophagus. With adenocarcinoma surgery they reshape the stomach into a tube, remove the whole of the oesophagus and join it up at the throat. It’s a long and major surgery, the recovery is about two years.

So you are very lucky that your cancer was able to be removed during an endoscopy. As I understand it EMR is a bit like a tonsillectomy, so I’m sure the oesophagus is going to be sore and inflamed while it heals.

Sorry I don’t have any real answers for you, I hope it soon heals and you are able to eat solids soon. Meanwhile enjoy the jelly and ice cream!

Counting the days, making every day count.

Brent

Jenny1308
Posted by

Hi latchbrook, thank you for taking the time to respond to my first post. My cancer is squamous cell carcinoma  which has been caught fairly early, but to have it described as no more than having your tonsils out by someone else on here is, quite frankly, insulting! It’s been two weeks now and I still can eat solids so I’m feeling very weak. I had a phone call from my surgeon yesterday to say they needed to do the whole thing again because there were still cells deeper in the muscle than they first thought.

Whoever wrote that piece, please don’t trivialise someone else’s cancer compared to your own, it’s not cool and it’s not helpful.

Jennybell
latchbrook
Posted by

Hi 

I'm sorry to hear that you've got to have the operation again. That must have been devastating for you.

Have you spoken to your hospital team or your GP about your problem with eating? I believe there are drinks you can get on prescription if eating solid food isn't possible.

Wishing you all the best

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Zappaman
Posted by

Hi Jenny, I'm not sure what you mean, Brent is not trying to belittle what you have been through he was only trying to enlighten the rest of us as to what you have had done. The comparison to a tonsillectomy gives me a picture that you went through your surgery by means of going down your throat. A different type of surgery from the adenocarcinoma, not any less traumatic or less severe, just different. I'm only speaking for myself, I didn't know what type of oesophageal cancer and surgery you had posted about. I suspect that is why your post went unanswered. However after reading Brent's reply to your post I gained a better idea of what you have been through. It's quite common for patients who have had adenocarcinoma surgery to have the gullet dilated several weeks after surgery, but it sounds like your throat is very raw from the surgery you had. I'm sorry to hear that you have to have more surgery, good luck. And I would just like to say Brent has been a great source of information and given great advice and encouragement to me and others. Kind regards Frank.

Jenny1308
Posted by

Hi frank,  that does put a different slant on how I read it! I do indeed have squamous cell which I’m forever grateful was caught early. Sadly not everything is going to plan. My oesophagus is now so swollen and infected it has completely closed, quite literally. I’m back in hospital on IVs. They tried to do another endoscopy today to see what was wrong and to fit a feeding tube. The powers that be are going to try again tomorrow under a general. I’ve lost 2.1/2st in two weeks, but I’ve GAINED shingles so I’m in isolation. 

Obviously I misunderstood Brent’s previous comments, and I. apologise.

kind regards

jenny

Jennybell
Zappaman
Posted by

Hi Jenny, you are having a rough time of it. It's bad enough not being able to eat but to get shingles on top of that, I can understand your angst. I really hope that they get it sorted out for you, it must be a worry. Please keep us posted on how things go and as hard as it is think positive, picture yourself eating something you have really missed. Strangely enough I had a craving for toast, my wife would have some in the morning and the smell was wonderful. I had to wait about 8 weeks after surgery before I risked it, but it was heavenly. Please ask anything if any of us can help with advice, now that we know what you have been through and are going through we might be able to offer advice. Good luck with the endoscopy and kind regards Frank.

Jenny1308
Posted by

Hi frank, small world! That’s what I’m craving HOT BUTTERED TOAST! No luck with endoscopy yesterday. My oesophagus has got itself completely sealed. Going off for the “oops! I’ve wet myself! No I haven’t “ ct scan with dye contrast to see if they can come up with any answers, because they can’t tube feed me, might mean straight into my stomach, which will mean weeks in hospital. 

I do know I should be counting my blessings compared with the cancers you’ve all faced. But my shingles is agony and I’m not used to being the patient!

my very warmest regards to you all.

Jennybell
Zappaman
Posted by

Hi Jenny, hopefully you will get a diagnosis and solution soon after the CT scan. Once you can start eating it really cheers you up. I think for most of us who have been diagnosed with adenocarcinoma the most common surgery is the Ivor Lewis procedure. It's about a 9 hour operation and when you come out of theatre you have about a dozen tubes coming out of you. One of those was a jejunostomy feeding tube directly into the intestines and I think after about a week I was given a feed through that. Your journey will be interesting to hear from your experiences, so do keep posting. If you do get a feeding tube inserted you will probably get shown how to use it and discharged in a day or two. Good luck and kind regards Frank.

Jenny1308
Posted by

Just had to reply to my reply! My new food craving arrived yesterday when I going through the giant donut when having my ct scan with contrast yesterday to see if there was a less invasive way of seeing why my oesophagus has clamped shut on me!

i mean you can’t eat, and they push you through a giant donut? I could just picture the soft white sugar covering it! 

Jennybell
Zappaman
Posted by

Hi Jenny, your post about the giant donut reminds me of a Saturday morning about 20 years ago. I used to take my son to a local weekly market for hot fried donuts, tossed in sugar and cinnamon. You got 5 for £1 and they were delicious. Sadly not been a market there for several years and would love to have the hot donuts again. Mmm I think I will look for a recipe. Sweet dreams of donuts, good luck with the results of the scan and kind regards Frank.

Jackie007
Posted by

Hi Jenny sorry to hear your journey is so painful and upsetting for you , when I couldn’t eat anything  I felt very low and thought I would never be able to share a family meal again but I have had numerous dilatations now and can finally eat again , praying it’s the same for you soon  try and keep your chin up x