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.

Journey Just Beginning.

SCANDSA
Posted by

Hi All

On Saturday i attended hospital for a "top and Tail" endoscopy..... bowel and stomach.  After the procedure the consultant endoscopist sat me down and gave me my colonoscopy report and went through that,  it was clear.

Unfortunately or fortunately a nasty piece of work was found in my oesophagus as part of the Gastroscopy , biopsies were taken. Then she told me she was very sorry to say that that it was 99.9 % cancerous, she tried to tell me what would happen next but i dont think i took it all in to be honest and have forgot what she said.  She would not give me a copy of the Gastroscopy report.

i will  post my progress on this journey as it progresses but if anybody wants to comment  as to next steps etc, what to expect feel free. 

R.

Glasgowgirl
Posted by

Hi

I'm at the start of my journey  too. Its scary but the staff in the hospital and the clinical nurse specialists are so amazing and are able to answer any questions you may have 

I had my endoscopy in April 

Since then I've had

A CT scan

A Pet scan

Quite  a few blood tests

A meeting with a consultant to confirm diagnosis 

Then a cardiopulmonary fitness test 

A staging laparoscopy 

Then a other meeting with a consultant surgeon who advised I will be considered for osophagectomy following chemotherapy treatment. 

I have an ECG and cardio echo scan booked for Friday 

Then I meet  the  oncologist next Tuesday. 

It seems live forever since  my endoscopy in April.  But all the tests etc are required so they know  exactly  what you  require. 

I have been  told chemo will start  within 2 weeks 

Surgery  late August or September all going well.

I hope that gives you some ideas what your journey  might  look like though  everyone  is different.  

All the best whatever route you take 

Positive  thoughts  always x
BrentS
Posted by

Sorry to hear that you find yourself here. The immediacy of the 99% diagnosis is a bit of a shocker and so unexpected for most people, I think most of us here were not too surprised that they found something when they did the endoscopy, after all we’d probably had swallowing issues. But cancer?  Just like that? So I’m not surprised that you couldn’t take much in, especially if you had had a sedative.

So what’s to come. The treatment pathway is pretty standard. Lots of tests, scans and hoops to jump through. Chemotherapy then hopefully surgery. Then maybe more chemo

The specialist nurses are going to be your new best friends. They will be able to tell you what is going on and when things will happen. And when they don’t happen they are the ones you chase to make it happen. 

My advice to you at this stage is carry on living and get fit! The recovery from surgery is tough so you need strength and fitness, and just as important is a positive mental attitude.

The waiting for things to start is difficult. Waiting for test results, MDT meetings etc. But you should expect things to start in six weeks. 

Good luck, keep your head and keep posting!

Counting the days, making every day count.

Brent

SCANDSA
Posted by

Hi Brent,

Thanks for the response, it was unexpected but maybe not as most people would expect. Over the last 5 years i seem to have had one hurdle after another so there was a level of expectancy if im honest .

Since 2014 i have terrible Issues with type 2 diabetes,  I have had a stent fitted due to calcified arteries, Damaged Liver, 2 severe kidney stone operations  and problematic hormone imbalance. At one stage they thought i had cushings disease and actually found a lesion on my piturity gland but fell short of operating as a couple of key indicators just didn't cross the line, but still being monitored for all those aspects.

I thought i was winning the battles with new meds that they gave me HRT and victoza....these have working wonders, more energy, going to the gym,  weight loss 27kg since last july, vastly improved sugar levels , BP improvements, Liver repairing itself, all blood tests looking good , general health back on track brilliant !, then suddenly after xmas i started to get digestive issues, thought it was just digestion,  to the point about 5-6 weeks ago i could not hold done/swallow certain solid foods, and here we are today....I had a wonderful call with the GI ward yesterday who gave me a rough cut plan of the next 30 days. Pleased to say they are moving fast .... CT Scan booked for tomorrow 23/5 .....

R

SCANDSA
Posted by

Thanks  for taking the time to respond:)

Seems things start to move quite quickly once the process kicks in.....i had a call today telling me to get to the hospital pronto tomorrow for my CT Scan...thats not bad , having just had my endoscopy/biopsy on Saturday.

 Have a great evening 

R

BrentS
Posted by

It sounds as if you have the positivity to beat this thing. Good luck with all the ct scan and the subsequent tests.

I fainted while a canular was put in my hand prior to my ct scan - not a good start! But I toughened up and managed to get through surgery, and recovered to get to a place where I am happy and able to enjoy a good quality of life. I wish the same for you.

Counting the days, making every day count.

Brent

SCANDSA
Posted by

Things have moved on now......had CT scan last Thursday and this morning had consultation with clinical nurse specialist and Gastro consultant. They confirmed cancer of the oesophagus , staging set at T3, N1, M0. Now awaiting to be transferred to oxford for further care/treatment, possible pet scan before MDT meeting on Monday. 

Zappaman
Posted by

That's good news that it's not present anywhere else. I think it might be pet scan next, good luck and kind regards Frank.

BrentS
Posted by

Well nice to hear things are progressing. It’d be great to get the pet scan done so quickly. 

Roll on chemo!

Counting the days, making every day count.

Brent

SCANDSA
Posted by

OK, so MDT meeting took place in oxford monday and had feedback from clinical nurse yesterday.

feedback was positive and approach will be "curative".

Pet Scan booked for next wed 12th, await appointment with consultant at oxford, and also mentioned possible laparoscopy following pet scan.

BrentS
Posted by

Hi

As you say the feedback was positive. However, I’m not sure that you are feeling terribly positive at the moment. And I can understand that you are not prepared for this life change. But really life goes on afterwards pretty much as it g before, only better in lots of ways which I can’t really explain. 

If you have any questions about the pathway just ask, there’s lots of people here with experience.

Counting the days, making every day count.

Brent

SCANDSA
Posted by

Had confirmation of clinical appointment for monday  10th with surgical team and pet scan on 12th.

bit of a technical update.....

  • focal low and high grade dyslasia. Lesion 2cm in length and just below level of left atrium.
  • Suggestive of distal oesophageal tumour stage T3, N1, M0
  • moderately differentiated
  • [M]Adenocarcinoma NOS

Actually looking forward to my meeting with the surgical  consultant on monday , so as to get into the detail of the above.

R

SCANDSA
Posted by

Another Good and positive week.

Pet Scan result confirmed cancer had not spread .

Laparoscopy booked for this Tuesday 25th June.

Spent 2 days dealing with benefits Dept but also making progress on that front....

enjoy the weekend and the sunshine

R

BrentS
Posted by

Good stuff!

good luck for Tuesday. 

Things are moving along nicely. 

Keep posting. Keep positive

Counting the days, making every day count.

Brent

SCANDSA
Posted by

Morning All,

More positivity......MDT meeting yesterday after last weeks Laparoscopy.

Laparoscopy all ok, however biopsy taken from lesion on liver, thankfully results were benign, no other issues.

on to physio review next week followed by  myocardial perfusion stress test and scan ,  chemo beckons....

R