Husband’s results saying can’t operate terrified

Morning. Sorry you are having to go through this. Must be awful to hear that surgery is not an option but I do wonder how they are able to make this call without having the results of the PET scan. They couldn't really tell me anything until I had been for both the PET and CT scans and even after those I had to go back for an endoscopic ultrasound before they could give me a grading.

I was fortunate in that mine had not spread to the lymph nodes but irrespective of this they removed all surrounding lymph nodes during my surgery as a matter of precaution. 52 to be precise so I dont know why they couldn't be removed in your husbands case. This is something they need to explain.  Hopefully the PET scan will provide more clarity.

I found the upper GI team to be really responsive to emails so my advice would be to put all your questions in writing to the team and hopefully you will get a clear response. My updates otherwise came in the form of a weekly phone call which is not always ideal as; a) a week between updates can feel like a lifetime and b) it's really easy to forget to ask a question or not take note of something they say when your head is reeling.

Pretty sure I have seen other stories from people on here who have been told they are not suitable for treatment, who have then gone on to respond really well to chemotherapy making surgery possible.

Don't give up hope yet. Wishing you all the best and some better news following the results of the PET scan.

I had to deal with the children convo too. 12 and 14. Bit like ripping off a sticking plaster, we just went for it the same day I was told I had cancer. We had no answers for them at that stage as we had none ourselves but figured they would have noticed something was up if we hadn't told them so we took the plunge and laid it out bare.

There were lots of tears initially but they both amazed me in how well they have coped and how mature and supportive they have been, particularly with my wife. Talking turned out to be a great medicine and it might help you too to be able to talk with your son if you are having a moment and need someone to talk with or even a shoulder to cry on.

Hoping for some more positive news form you.at your next update. Your husband is young enough to fight this and win. X

Russ 

So sorry to hear of your hubby's diagnosis. It's a horrible club for you all to be joining, including your young ones. 

I am 70 now and was diagnosed with osophageal cancer back in March 23. After a brief period of discomfort when eating, a gastroscopy revealed my cancer. I was the booked in for other scans to confirm and stage my cancer. T3M0N1.

I had to wait for a few weeks to have the scans done and decided not to tell my family because I knew they would have similar questions to me and that at the time i didn't have any answers for them. It was a very difficult conversion when it came but my family took it well. 

My car plan was to have FLOT chemo followed by surgery and more chemo after.

There doesn't seem to be any correlation of those with this type of cancer by that i mean why some are operable and some are not. Therer must be very good medical reasons but they are not always explained well. My cancer shrank slightly after the initial chemo and my surgery removed my stomach and part of my oesophagus along with a number of lymph nodes. Like your previous commentator i do not know why having the cancer in your lymph nodes matters if they can surgically remove them without consequence. A question for your oncologist i suppose as we are all different of course. 

In August last year i was diagnosed with a secondary cancer following a ct scan. It is in my upper right paratrachael lymph node and is affecting my vocal chords so much that i can hardly talk. They have told me that due to its position it is inoperable. I find it very hard to believe and am considering getting a second opinion. When you see all these medical/ surgical programs,  it's amazing what they can do. This little bugger, 2cm, is defeating them and potentially killing me. Don't get me wrong i have had more chemo and 25 doses of radiotherapy which showed it originally but it has started growing again without any indication from oncology about further treatment other than i can't have more radiotherapy. 

Sorry for ranting about my own issues, i meant to try and support you. Please update on here about your journey.  I wish you luck moving forwards and hope that after chemo your husbands came becomes operable. It's an awful journey for you all to be facing but there is light at the end of the tunnel. If you click on my name it should take you to a diarised version of my own journey.  It may be of some help to you.

Sorry to know about this, reading others replies l have heard of others responding well to therapy too. A pal of mine was told this 7 years ago and is ok responded to therapy very well.

My husband has a 3cm growth results next week. He can only swallow liquid and has lost 6 pounds in 3 weeks.

I understand its hard to tell children we had to tell my son similar about his grandpa who was like a dad to him, depending on my husbands results the thought of telling him same about his father is not something l want to think about today 

But where there is life there is hope and l know several friends who had diagnosis and are still with us.

Also could the treatment shrink it and there are new treatments coming out often so things could be different in a year. 

My husband has been in many clinical trials for other things and we don't even see them in the media but they may be around in the future 

Stay strong the new scan may help other things be considered hope you had a better day sending you good wishes 

Sorry to hear this . You will get lots of support here. My husband was in the same boat , please free to message me or check my bio. 
x

Thank you so much for taking the time to reply.  Trying to keep a bit of hope going for my husband, it’s so tough x

Thank you for replying. It truly is such a devastating journey when you get told the news. We are still in shock. The first step is to get some nutrition into him. He’s hardly getting anything in now and think he’s getting dehydrated. We have to wait until Tuesday. Everything feels so slow at the moment. I will look up your diary - thank you x

Thank you! Really trying to hope there will be something that can help, any precious time we can have with him. We will keep fighting. He is feeling very down and in a dark place so trying to be strong for him but goodness this is so tough x

Biopsies back, having difficult time new doc suddenly came to bed, hubby in hospital now as he cant swallow. Doc just said bad news you have cancer with biopsies they are bad and they maybe cant operate as he has varicies in stomach or maybe we can, know nothing as l just read it off the notes im off now the real cancer team see you next week. I couldn't even touch my husband as he was behind testing machines and my son behind a chair as the guy just walked up said in open ward then buggered off. Hubby said get a coffee for our son as he was shaken staff on trolley said no its for patients. So brutal. We ve been told contradicting crap for weeks now.

Varices are non cirrotic as hubby doesnt drink or smoke peed off with doctors saying oh he's an alcoholic is he as its a rare disease. He's diabetic  and had hardly any food they wont do anything til the cancer team turn up yet quick to say virtually passing the bed you have bad cancer bye.

He had the odd cough before Christmas and l said you seem  to cough now and again and he said no problem just something irritates my throat nothing wrong, now im worried l should have made him see doc, he's been seeing specialists for years since pandemic and had just had endoscopy fairly recently that had been clear. This now came on in 6 weeks.

It's scary as we've had crap treatment with liver consultant who just bellowed at hubby before we sat down you cant have a liver transplant ! He didn't even need it but bloody consultant thought non cirrotic liver was for alcoholic abuse when poor hubby doesnt drink. Got nothing against drinking at all, my uncle  was an alcoholic , dear lovely  man, things like that happen to anyone. Some staff have been nasty and wonder why the hell they are doctors.

There are plenty of better staff for sure but it doesnt help its frightening 

What hospital is this ? You can get a 2nd opinion. Nit sure where you are on the U.K. 

Wales yep you are right. We hope to get sense from the cancer team as his varices are very manageable luckily they don't bleed etc. Just had some inexperienced doctors.

I know we didn't expect hubby to go in to hospital so suddenly. His brothers a nurse and been with him at hospital this morning. Im hoping cancer team with their expert surgeon can be better pretty sure he must be x thanks for the support.