T4N2M0

Hello Donna (Donna71) 

I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying, your post will be "bumped up" to the top of the page and I hope seen and replied to by other members of this group.

Having read your post a couple of times I can understand your concerns about treatment and travel. There is a thread on the Cancer Chat Group you may wish to read and post in and here's the link:

 RE: Farming, rural communities and cancer 

I hope the above helps and wish you well going forward.

Best wishes - Brian.

I was diagnosed with similar to yourself.and deemed inoperable. 
I received chemoradiotherapy - it gave me about 2 years of good quality of life (asymptomatic) and I’ve made the most of it. 
There will be no point examining your oesophagus until the it has healed from radiotherapy about 3-4 months. Thereafter I can assure you, you will receive appropriate surveillance. 
I was lucky enough to have family near to the hospital and stayed with them. So I feel for you. The treatment I tolerated well but daily visits are tiring and agree you need to find comfortable accommodation nearby. 
Best of luck xxx

I've been told by the oncologist no further surveillance other that the post 4 month scan unless I present with symptoms...I just find that very anxiety inducing xxx

Scanxiety is controversial and divides opinion between patients and clinicians. There’s a clinical trial looking at the benefits (or not) of routine surveillance.

in your case I would take it as your consultant is planning for success x

So... Having got my autistic clinical brain used to the radiotherapy route even though it's a GOJ adenocarcinoma Cardiff and vale surgeons are discussing me again in their mdt...I can't see that they are planning Flot and surgery after not reaching the cpet figures but I'm wondering if they're considering surgery post radiotherapy? I'm 55 I just want the best chance xxx

Although my cancer was different to yours, after what I will call gruelling treatment, I have been in remission for 3 years now. I did have to move to another larger cancer treatment center for the daily treatments which though expensive was really the only way the daily treatments could have been tolerated. I think this was the most challenging experience of my life to date and I am older than you. Still, with the support of family and friends I did get through it. While very ill, I refused visiting from almost everyone. No energy. Anyway, while I questioned my quality of life at times, since my recoveryI have been extremely grateful for this forum ( since I could not even speak for a period) and for health care workers and all they did for help. As a nurse practitioner, you have been a gift to many in your care I’m sure. It is very hard to let go and I will not tell you to do it although I personally had to “give up” control at times even with such a minor issue such has how my bed was made, sheets tucked in etc. Now I can laugh about it, but at the time I was grasping at control since my health and body seemed to be beyond a level I was used to. May you find support in this forum or in other forms and may your body recover in it’s best possible way with the care available to you.

Kathy (Canada)