Just been diagnosed

Hi Rhodie,

Sorry to see you’ve ended up here. Everyone in this group will remember the first time they heard the news, it’s the worst part and waiting to find out what stage your at is an awful time. You will likely have a number of tests before they see the full picture including CT, PET scan, endoscopes and potentially some exploratory surgery. 

All I can offer at this time as I’m sure the many members of this group is that we’re all here for you with as much help and experience as we can offer. 

The key piece of advice I wish I had followed was simply to stay off the google doctor, it won’t help. It’s beatable and people beat this all the time and you could be 1 of them. I was told I had a 7cm tumour that was approximately 2 years old, I am now in remission. 

Best Regards

Hi Garyb,

thanks for your reply. Yes it is a worrying time. I had my scan yesterday so now the waiting time starts to get the results. Until then I try to think the best, but obviously the worst case scenario keeps popping into my head. I am a fighter and I am staying positive and will fight this with everything I have got.

My family has a history of bowel cancer, and  both my parents and various uncles and aunts have all passed away with this condition. My brother was diagnosed in March 2018 and was told to inform all members of the family to get checked out, and put me on a high risk due to the generics and to be fast tracked. My brother lives in Nottingham and his consultant sent me a letter for my GP to put me on a fast track for a colonoscopy. I was seen by a cancer unit in June, and have been chasing this up since then. A month ago I finally got an appointment with a consultant which was yesterday afternoon. I am sorry to say I had a few words with him, saying that this has taken over a year to get this far, and I am supposed to be fast tracked. I told him it was too late as I have been diagnosed with oesophageal cancer. I realise this is completely different to bowel cancer, but the distress this has now caused for both my wife and myself is hard to take. In the consultant defence he apologised and agreed that a year is unacceptable wait time for a fast track, and he jugged his diary for me to have the colonoscopy tomorrow, so now will have two things to worry about. He did say he would get the results back to me asap, so fingers crossed.

Good morning,

my surgeon said to me that the patients with a positive outlook tend to fair better, anecdotally at least.

interesting about the bowel cancer, my father and grandmother both had bowel cancer so there would seem to be a link. I had no idea there was even any type of preventative screening until recently and my brother has been tested for something called lynch syndrome.

Good luck with the results, things tend to move quickly from there. 

I have had the results from my scan and it is good news. The scan shows it has not spread and so the team have decided to scape it to see if they can get rid of it. Another wait now for the appointment.

Has anyone had this done and does it have a good success rate ??

An update, have just had a phone call to say my appointment is booked for 24th May

Good luck hope everything is ok

Update. Not so good news, I had an endoscopy in which they took the cancerous nodules out and sent them away for further analysis and unfortunately came back showing traces in the lymph nodes.  have seen the consultant who offered me the operation (not too keen on that) or 5 weeks of radiotherapy and every Thursday chemotherapy as well. I have opted for the latter as apparently the operation high risk and as I have had rheumatic fever when I was younger they are not happy about having to deflate my lung and work around my heart. I saw the oncologist on Friday (12th) and am now waiting for a phone call for an appointment to have another endoscopy and scan on the same day to pinpoint where they are going to zap me. I have been told the treatment should start in the next 2-3 weeks. If this doesn't work there is still the option of the operation.

Hi Rhodie,

That was my treatment plan - 5 weeks radiotherapy with weekly chemo sessions alongside & no surgery. I didn’t have any lymph node involvement but it was a stage 3 squamous cell tumour that was fairly sizeable.

That was April 2018. Got the all clear in Sept 18 & a 12 month follow up CT scan in April 19 showed no spread or recurrence so currently I’m cancer free & looking forward to the future.

So this treatment DOES work without surgery. 

Keep positive & as others have said stay the hell away from google.

Good luck.

Gus

Remember that the treatment path for squamous cell carcinoma can be different to that for adenocarcinoma.

Hi Gus 

what was you original diagnosis - was it T3 N0 M0 ?

and where was it - at the junction of oesophagus and stomach ? 

Not needing the surgery is interesting. Did you have FLOT chemo or some other protocol ? 

Which hospital were you treated at ? 

regards

John