Journey Just Beginning.

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 

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!

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

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

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.

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. 

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.

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

Roll on chemo!

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.

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.