PET scan showed multiple lymph node involvement so no option for surgery
Terminal diagnosis just Chemo offered
We both feel we need help with our mental health as we are both so scared and worried for the treatment and how long my husband has left
the consultant said up to 2 years if the chemo works
Don’t know who to talk to
Gas anyone else gone through this? Xx
Hi, I am so sad about your news. Have you sought a second opinion.
There seem so many good news stories in here. I don't understand why some have oesophagus and lymph nodes removed and yet you cannot get fixed. Why is the treatment so different or even none at all.
I am only at the beginning so cannot help. I do wish you all the best. Let's hope that some wonder drug comes along. Have they offered you immunotherapy by the way.
We we’re in your position in 2008, my husband was told his OC was inoperable due to affected lymph nodes too close to a main artery and two years would be a good outcome, more likely 6 months. He went ahead with the chemo that was offered (it was ECX then) and we did all we could to fight it.
It’s now 15 years later and he is alive and well - the chemo worked. The affected nodes returned to normal and surgery was possible. He had his op in 2009 and we have never taken a single day for granted ever since.
Your minds will be all over the place, it’s such an awful shock, if I can help at all I will but do ask your husband’s medical team any questions you need to. We found the Upper GI nurses were so good at helping with our fears and they took the time to explain anything we we were unsure about.
I know we are very fortunate to be where we are but the good stories need to be heard, positive outcomes do happen and I’m sure that things have moved on a lot in 15 years. I send you both my very best wishes and I hope this has helped a little bit.
I’m so glad you both found it helpful. I’m sure once chemo is under way you will somehow feel that you are under the oncology umbrella and something is being done.
A couple of things I found positive at the time: I rang the Oesophageal Patients Association and spoke to a lovely lady for about 45 minutes, she was so kind and supportive it was a huge comfort. The OPA have so much experience and advice to offer it’s worth thinking about giving them a call.
The other thing I did was to keep a diary, I wrote in it most days and it was good to get the thoughts out of my head and onto paper. I know this wouldn’t suit everyone but it worked for me and it was a way to pour out my hopes and fears.
Happy Easter to both of you too x