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.

Recently diagnosed

Bingram43
Posted by

Hi all

I got diagnosed with oesophagus cancer (a tumour was found at the end just before entering stomach). I’m only 43 and the consultants and nurses were in as much shock as me.

Sadly im a mum raising a 5 and 8 year old so my brain is going crazy. I’ve managed to get a pet scan on Wednesday having only my case reviewed last Wednesday. I appreciate time stands still as they were waiting for my biopsies to be back.

im trying to be strong and positive. The endoscopy showed my stomach, lower intentine to be normal. My liver and kidney is functioning fine so all these are positives I think.

im hoping it’s localised. It’s gone into the lymph nodes next to the lump which I think is normal as it’s not been caught in the very early stages. Everything I’ve read says that’s it’s hard to detect then anyway as it appeared as indigestion to me. I only had symptoms before new year so I’ve been diagnosed quickly.

my concern is the waiting. I think it’s growing as I wait around. I’m petrified that it’s travelled to other areas.

Apparently my age is good! I’m healthy. I couldn’t go to work today as I just can’t face seeing people. I’m such a happy go lucky person and this negativity isn’t good. I hate it.

is this normal to feel like this?

BrentS
Posted by

Normal? There is no normal way to feel. Having said that everyone finds the waiting horrible. And yes some people worry about the cancer spreading during this time before treatment starts. 

It sounds as if things are moving at quite a pace as you have a PET scan but haven't yet had the histology results! Most people have to wait about 4-6 weeks from the gastroscopy to starting treatment. And the waiting is the worst! Telling people is difficult as well, especially when you don't have the full picture. But DON'T GOOGLE. And don't take any notice of statistics (there aren't enough for someone your age!) Your specialist nurse, the surgeon and the oncologist will be able to give you the facts and this forum will give you the benefit of experience, so don't be afraid to ask.

I'm sure everyone reading your post will be shocked at someone so young being diagnosed with OC. But as you say you have your youth and fitness on your side. You have everything to live for and there is no reason at this stage to be anything but positive. 

I was diagnosed five and a half years ago at the age of 62. I was determined to survive. I had so much to live for  (to see my sons get married and to meet my grandchildren). So have you! So don't think about stopping living.

You say you are fit... well get fitter! the better shape you are in should you need surgery the quicker you will recover.

Life's not bad, even after surgery. I have travelled the world since my surgery. I am fitter and happier than I have ever been. Sure you will have down days, when the enormity of it all overcomes your positivity, but be determined to bounce back and meet it head on.

Counting the days, making every day count.

Brent

Garyb
Posted by

Hi there,

i was diagnosed last year on the 23rd of August (my 37th birthday). I have 3 children aged 11, 5 and 3. I ended up with stage 3 T3N1M0. Despair is 100% natural and to expected for most of us except a rare few however for me after a few weeks iit subsided, I thought it out and thought about the next hurdle whether it be a scan or chemo or some set of results. 

I sorted out my affairs, a will, checked the insurance and mortgage situation should the worst happen and then I got my head down and fought.

There is much more hope than the internet will credit you with and as Brent says, stay off google!. For me I had FLOT chemo which is now the gold standard and I would make sure you enquire about it, it completely destroyed my 7cm tumour and since the surgery I have now a pathological complete response (no visible cancer). I will follow up shortly with more chemo for belt and braces. I am now told I am more likely to beat it over the next 4 years or so and be classes “cured” than not. I won’t tell you the odds they gave me to start with but let’s say it didn’t help to hear them. 

Your young which means you’ll withstand what they throw at you and that is a great case for optimism. 

The magic for me was that I’ve never spent so much quality time with my kids since last August and in a game of fine margins the love my kids have shown me in return may well turn out to be the difference.

when my man was diagnosed 26 years ago she was given 6 months, she said “you don’t tell me when to go, I’ll go when I’m ready” still here.

You can beat it, it’s beatable!

Good luck. 

Nothing worthwhile comes easy.
Bingram43
Posted by

Hi there

thank you for sharing that with me. You have definitely given me hope. I’ve received a letter today and I’m seeing the surgeon next Tuesday and they will review me on Wednesday.

It is pretty fast so I’m pretty confident they are trying to get me in. Clearly want to do surgery so I’ll see what they say.

My tumour is about 2cm so I’m hoping I’ve got it quick. Did they cut yours out or did the chemo come first to shrink it.

your so young too and I’m relieved to hear your good news! Also to maybe expect the worse and keep everything crossed.

Thank you again

B

Garyb
Posted by

Hi,

i had chemo first to shrink the tumour, this was followed by surgery which revealed the full results of the chemo. It was difficult to tell from the scans if what was left was tumour or scar tissue which is why the surgery was still necessary.

I think the route they take depends on the stage of the cancer, mine had found it’s way into a local lymph node and due to the size of it they wanted to shrink it in order to try and achieve a clear margin. 

Ultimately it will be up to you what route you take and if what they recommend doesn’t make sense then ask plenty of questions. I went along with the plan because the approach to me made sense which was essentially;

1) pre op chemo - shrink tumour and stunt any potential spread. This was important as post op your body will be busy recovering and the cancer may get a bit more opportunity than it normally would to spread.

2) surgery - remove the primary cancer and check for any signs of any further spread.

3) post op chemo - clear up any potential micro metastasis.

They are indeed you may feel a different approach makes more sense as some have done on this forum, as long your happy with the plan. 

Regards

Nothing worthwhile comes easy.
Zappaman
Posted by

Hi, sorry to see you have joined the group. Yes it is natural for the emotions to be all over the place, I was up and down like a yo-yo in the first week or two. Then a strange kind of calmness came over me and I started to think, right this is happening to me and I have got to deal with it. Everyone has to deal with it in their own way and once you have the staging and a clearer picture you can decide what you think is the best way forward for your treatment. I was in no rush to get treatment and I didn't worry about the cancer as I didn't think it would suddenly get worse just because I now knew what it was, after all I didn't know how long it had been there although I had been aware of swallowing difficulty over several months. The staging was T3 N2 M0 which meant that It had spread to local lymph nodes but I still took time to consider the treatment offered. That was in July 2016, I finally had the Ivor Lewis surgery on the 3rd October and I am doing well, like Brent enjoying life differently but good. I was 57 years old and had been a smoker for about 45 years and not exactly fit. I had help with getting into a positive mindset by a Nlp practitioner and it really did help me through the process. I am still very positive today and happy to be here. You will be amazed at how strong you can be to mentally and physically get through this. Good luck and kind regards Frank.

PS we are all rooting for you.

Anon613
Posted by

Hi there, 

I was diagnosed last year with oesophageal cancer. Initially as T4aN2M0. But after exploratory surgery to confirm it had not spread to my diaphragm (I think my tumour was just resting on it?) my cancer was re-staged at T3N2M0. I had 6 visible (via PET scan) lymph nodes infected. Anyway after 2 cycles of FLOT and Ivor Lewis surgery i'm now in remission. So there is hope!

My biopsies (I had 13 samples taken) took two weeks for the results to come through. I'm sure your PET scan will show if your cancer has metastasised. So if you have had the results of this scan you know that your staging in M0 so you should be offered a curative treatment. 

The waiting for treatment and results is tough, but try and continue to be positive. When I had blue thoughts I tried to distract myself. 

Anon613