Hello Marc, 

Thank you very much for coming here to share your stage 4 oesophageal cancer story. Being diagnosed with oesophageal cancer during the covid pandemic must have been tough. You've been through so much in the last few years and the chemotherapy treatment seems to have been hard going. I am sorry to hear that the CT scan revealed it has spread slightly to the lymph nodes. Well done though for getting through all this intensive treatment, the chemotherapy and the radiotherapy and I hope that you won't have to wait too long for results - let us know what the results have shown if you don't mind I hope that all this treatment you have bravely been through will have been beneficial. It must be so hard too to be living without any voice for the last 18 months - I hope that you are still managing to communicate ok with your friends and loved ones. Do mention this continuous dry cough to your medical team so that they can look into it and hopefully have some suggestions that will help. 

I hope that you will meet other members of our forum who are going through something similar at the moment. One important member springs to my mind davek who also had a stage 4 oesophageal diagnosis and has therefore been through something similar and I also noticed this thread by Greencarpet who at the age of only 32 was diagnosed with stage 4 oesophageal cancer 9 months ago and he mentioned also having a spread to lymph nodes. He was at the time waiting to start chemotherapy and I hope that you will be able to chat and exchange experiences. Feel free to respond to his thread too if you would like to do so. 

I hope that you will be able to connect via the forum with others who have had a stage 4 oesophageal cancer diagnosis and that you will be able to support one another. 

We're all here for you anytime you need to talk to others who understand what you are going through. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi Greencarpet and TheTelford Wolf,

I wish I could give words of wisdom, but I’m afraid you’ve both got more relevant  experience than I have. 

In 2013, I was told that my primary oesophageal cancer had grown like a fist around my aorta. This ruled out any surgery or radiotherapy. Further test showed I wasn’t suitable for hormone therapy! 

One the plus side, I’m now almost ten years beyond the prognosis I was given.

Good luck

Dave

Thanks for your reply,I was busy yesterday what with kids and grandkids,and my head is all over the place at present,but that’s good to hear.I don’t however have health insurance,but my question tomorrow to oncology is immunotherapy an option,as apart from chemo I can’t see any more options.

This  waiting game is the worst,are they going to say it’s chemo or,you have so long,without it,I am a positive person and remain happy and active,but I also read life expectancy is 5 years from diagnosis and this is the start of year 5,time will tell,and tomorrow may give me further hope,

I wish you good health,keep in touch and I will let you know the outcome kind regards, Marc

Wow..how do they monitor it,do you have regular CT scans,And has it grown anymore it must be a worry ,Marc

Hi again,

For the first 9 years I was having a CT scan every 6 months for monitoring. 

I then asked them to review all my scans from first to last - like an animation. They indulged me and were surprised to see that over the years my primary and secondaries had continued to shrink (without further treatment) until there was no visible sign of cancer apart from shadows which may be scar tissue where the cancer used to be. 

I’m now having a CT scan every November. 

I’m convinced it will eventually return, but I try not to let the fesr of that get in the way of enjoying these unexpected years of life.

I feel incredibly lucky - especially when I remember that I was told in September 2013 that I might not make it to Christmas and that palliative care was my only option.

Good luck!
Dave

Wow,your incredibly lucky ..and long may it continue..

Thanks