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.

What to expect

Kessock_south
Posted by

Currently all I know is I have cancer in my esophagus and wait for a pet scan not really been given much info just been told to wait til this scan then am operation. 

Am aright with it all Ave a different outlook on  life to most this is just part of the cycle of life, but what's stressing me out most is thinking about family and friends mainly the partner and our children, 

Am 41 and the cancer is 3cm in 1 node next to the tumour after been told things kinda fall into place symptoms wise am thinking it's possible maybe been there a year possible longer

What's the operation like after having it recovery time wise chemo seen enough friends go thru it and I just want to put there minds at rest as mine is ready to fight 

WhittyKitty
Posted by

I understand what you mean, it seems like everything goes really fast but then really slow too! 

My husband was diagnosed T3n0m0 but they are treating it as stage 4 as although no mets it’s through the wall of the oesophagus. He was diagnosed on 10th of October and had first chemo on 20th November, 2nd lot today.  He can’t have the FLOT that a lot of people are on as it can cause narrowing spasms of arteries and he has had 4 stents in his heart after heart attacks 3 years ago.

Imhope you hear something soon, please let me know how you are getting on, I’m new here too x

Suzreen
Posted by

Hello am suzie and I want to ask if you dint mind any symptoms that you know of .. my mum has esophagus cancer and they say its incurable and inoperable it's been 8months now fron her diagnosis.. shrefused all treatment and went with change of diet life style and is on cannabis oil .. she is eating and keeping it down she has pain at times when swallowing but no always she also has pain in heright hand side and back and stoumic but not always besides that she is doin really well ... she has a c.t scan tmor to see where shes at .. my question is at this stage (8 months in to it) what sympms ect should she have any comments back would be greatly appreciated many thanx and one love to all

BrentS
Posted by

Sorry you find yourself here but it’s good to hear that you are ready to fight!

Your specialist nurse will be able to fill you in on your particular treatment pathway, which will become clear after all the scans etc.

The surgery depends on where the tumour is and what kind of cancer it is. 
There are a couple of types of chemo, ecx and the newer FLOT regime. I had ecx and sailed through three cycles before surgery but didn’t manage one cycle post op. But everybody’s experiences with chemo are different.
I had the Ivor Lewis procedure over five years ago. It’s a pretty major op, but some centres are doing a minimal invasive surgery now which should make recovery quicker. 
I was able to go on holiday to Norfolk a couple of months after, see my son married and go on a Mediterranean cruise in June 2014 after my op in February 2014. Since then I have travelled the world with my wife and been to some pretty amazing places and eaten some weird food like tree ant salad in Cambodia!

I have a positive outlook on life, especially now when I have so much to be grateful for. Your family will find it tough at first I’m sure but by giving each other support when needed you’ll pull each other through.

Post again when you know what your staging is and what your treatment path is going to be. You will no doubt have specific questions and be glad to hear of others’ experiences.

Counting the days, making every day count.

Brent

Suzreen
Posted by

Oh wow that's amazing to hear am so happy for you  .. I just hope and pray that my mum is goin to be okay .. she is so tiny anyway am we are afraid chemo will do more harm than good .. am in contact with people who have guided my mum thru this journey. They will offer the chemo and other things and that makes my mum so anxious because of reports shes looked in to and to be fair if you look it is scary, but I just want to ask to see about symptoms mainly I just thought i would mention the medicine my mum has chosen to go for .. am sorry , am a little lost at the Moment dont know where to go who to speak to life is heavy ... many many thanx and again massive congratulations am over the moon for you and your family.  Thank you for your comment x

Kessock_south
Posted by

I start chemo on Wednesday 15th Jan I am getting the flot every 2 weeks for 3 months then operation in April followed by more chemo which the aim is to cure not treat so all sound good, the operation sounds and is pretty serious though with lots of possible complications, but all worth it in the end, takes upto a year to fully recover with around a month spent in hospital in total 3 days out cold followed by upto 2 weeks in high dependency ward then upto 2 weeks in a normal ward, am told that been able to walk 20yrds a month after the operation will be a massive achievement. 

Here is to a long hard 2020 but with age on my side and an amazing family then it should all be fine in the end... 

Kessock_south
Posted by

My symptoms were weight loss always feeling sick the feeling of food been stuck then like a dumping feeling into the stomach, also often sore throat, all this I got sent for various tests which discovered the cancer at the entrance to my stomach, surgery is really the only way to rid it unless it's to far gone for that I was told radiotherapy isn't a good option for this type of cancer chemo op them chemo should cure it but again everyone is different they say. 

Kessock_south
Posted by

The specialist will send your mum to dietitian who will provide help to put weight on or keep it the same, chemo shouldn't make her loose weight if the antisickness is been taken regularly, try getting her some cannabis to was the symptoms and also help the chemo work better and harder look into the research with oil then search for rso cannabis oil easily found online and legal to buy rso aka Rick Simpson oil normal cannabis is easily found in any street in any town village or city someone will know someone who has it illegal yes helpful yes worth the risk you bettya. 

Zappaman
Posted by

Hi Kessock South, (South of the Kessock bridge?) I don't know where you are getting the surgery done, I had the Ivor Lewis surgery in Edinburgh royal infirmary. I was in the hdu for 4 days then an ordinary ward for 8 days because I had a chest infection which is not uncommon. They had me walking around asap after the surgery, about 4 days if I remember correctly. Then walking distance was increased and I was accompanied. Once  they were happy I was walking around with the pump stand wheeling it about. I was 57 at the time and had lost about 5 stones, when I got home as long as it wasn't raining I had a walk outside the house for a couple of hundred yards. I gradually increased the distance and my wife accompanied me incase I fell. Good luck with your treatment and kind regards Frank.