Newly diagnosed Oesophagus cancer

Hi Eileen

Very similar sktauation. Had pain on swallowing, painful burning heartburn and reflux  - very clear symptoms of OC. Sent home with Ppi’s from doc for a month, went back and Told me to have ranitidine as well. Another month passed. Then had an aborted gastroscope ( I had to ask for it and only got it as in private care) due to pulling out pipe on sedation. Told all looked fine. Told to think about having Barium in the  future , so after 2 surgeries, Xmas and my sons first exams in a new school I went as by then was losing weight and could only eat soft food. Same thing - 6cm tunour. Another gastroscope to confirm (no sedation this time). By then I was stage 3 with lymph node involvement. NHS practice didn’t even know as hadn’t bothered to read reports from hospital. Cost me 6 months.

Anyway did whole treatment (8 chemo’s, 25 radiations and 12 hour oesophagecto

Y after tumour shrunk from chem etc)

Got 1 year all clear from CT scan 6 weeks ago and 3 weeks later I found bone mets as had MRI for what I thought was hip bursitis. So now I have to have hip replacement and radiation and possibly chemo again. I was feeling great - I am ‘only’ 54 - always been healthy. Don’t smoke barely drank (now not at all) and are heathy and exercised. 

Don’t give up hope as if your Mum’s tumour shrinks fromchemo they will very likely offer her surgery. 

All the best 

Blossomstix, 

Isn't it terrible so many people's symptoms are getting missed.

You've had a lot more treatment than my Mum.

I'm sorry to hear you have more treatment ahead with your hip problem.

My Mum was told surgery isn't an option, she's 66 years old and has problems walking.

She was told she is an "at risk" patient so it's palliative radiotherapy she has received.

It's so sad to see Mum weak, my best friend xx

blossomstix,

Thank you for the information.

This site has been so helpful to me.

Sadly Mum's had a bad day, lots of sickness and now I think her left leg is swelling up?? Xx

Hi runninglady

I am so sorry to hear this. This cancer is so horrendous. Report her symptoms straight away to her centre. 

Big hug to you both 

h

Hi Running Lady. I had the stent after being cancer free and still unable to eat or even sip water for almost 2 years. A short time after I went to the ER, coughing up blood. The stent dropped down and was life threatening. Airlifted to hospital to have it removed. Opted to try it again but on the operating table the doctor refused and just tried dilation with no results. I went back to the surgeon who had said that I could not have the Ivor Lewis operation ever. Refused  because of a tiny spot in armpit? After tests he agreed to operate. The evening before the operation  the doc called me and said no operation in morning? A probem was found with my tests. Seen cardiologist in morning and had 3 stents placed in my heart! Finally a few months later I had the operation. All went fine and is still so!The stent can be good or can be life threatening! It cost $45K for the airlift...Lol. Jim

Good Evening,

So today was the check up at the hospital to see how Mum is getting on.

After almost a month since the radiotherapy finished we didn’t know what to expect.

Mums swallowing hasn’t improved at all and weight loss continues.

We have kept in touch with the team who suggested more ensures to boost Mums calorie intake.

Sadly the consultant doesn’t think the radiotherapy has worked. 

She asked us to step out of the room and we were called in after a few minutes.

They want Mum to have an emergency endoscopy tomorrow, hopefully to see if a blockage, or if the tumor has grown or something else.

Thank you for tour continued support xxx

Good Evening,

Thank you for the continued support on here.

I haven’t updated recently- Mum had an emergency endoscopy December 21st that showed a piece of food had got trapped making Mum’s swallowing even worse.

This was removed, and we hoped things would improve....

Sadly not.

Mum is now 7 1/2 stone, and only managing two ensure drinks, and tomato soup at lunchtime.,

If we are lucky this stays down, but if Mum gets a cough or drinks too quickly the whole lot comes up.

Mum is very frightened, she said it’s like her belly is in knots. 

We are due back with the consultant 31st January.

Mum isn’t suitable for surgery, had 5 doses of radiotherapy at the end of October. 

Xxxx

Eileen 

Hi Eileen! 

I haven’t posted for a while so here is a short history of my husbands journey.

Diagnosed March with spread to lymph nodes. Op not possible. 3 out of 4 chemos, had to stop due to major infection causing 2 weeks in hospital. Tumour had shrunk. Over Summer swallowing deteriorated so stent fitted in September. Eating really improved and things were good. Tried another course of chemo which finished 15th December. Since then he has been very tired, sleeps 2 hours every day, but swallowing really bad again. Had another stent inserted last week, waiting for a scan to see if tumour has shrunk and stent had slipped or has it grown over top of stent?? Absolute nightmare and swallowing hasn’t really improved. Was sick after each pureed meal yesterday! Feeling desperate like you....don’t know how to help and can’t bear watching him waste away! Praying scan will be good but expecti worse and already been told no more chemo. Has anyone been offered any other treatments or do I just accept the worse? I feel I can’t give up but don’t know where to turn. Do hope your Mum gets some positive news on 31st, will be very interested to hear your news. Where is your Mum being treated? We are in Felindra, Cardiff. Thinking of you and looking forward to some good news. 

Jelliott

Jelliott,

Ah thank you for replying.

I’m sorry to heart our husband is also suffering.

It’s hard not being able to do anything.

Mum is under the Churchill Hospital in Oxford.

Mum was told about the stent, and all the risks.

She had 5 days of radiotherapy that doesn’t seem to of done anything.

Now they are talking again about a stent, but I’ve heard so many bad things, I havent told her all the things I’ve read on here.

Thank you for your support xxx