Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Any advice or help would be greatly appreciated!!!

Hayley1386
Posted by

My dad was diagnosed approx a year ago T3N2M0. He had chemo which didn’t work then chemo and radiotherapy combined, he finished that just before Christmas. We had the news today that although the radiotherapy was extremely successful on the two tumours dad had (one large node and a huge tumour in oesophagus -they are now completely gone!) Unfortunately there is now two further cancers in nodes and two small bits of cancer in one lung. Naturally we are deflated, especially as the cancer he was being treated for responded so well. They are now talking about palliative care, more management of the cancer rather than a cure. We are devastated. My dads 61, very fit and healthy and very strong, coped very well with all treatments. Any advice anyone could give, has anyone been in a similar boat? X

aCtdancy
Posted by

Hi there. I'm so sorry to hear your sad news. Your situation sounds very similar to ours. My Dad was diagnosed at 65 & underwent what appeared to be very successful treatment with T3N2M0. Unfortunately he had a recurrence too & following palliative care, passed away just before Christmas. My heart goes out to you both. X

Hayley1386
Posted by

Thank you for your response, so sorry to hear of your loss.

do you mind if I ask a few questions? What kind of palliative care did you dad receive? Was it chemo? How long did he have it before it “stopped working”? Or did your dad not have chemo after the recurrence? Sorry if this is too much for you, I’m sure you must know how I’m feeling, I just want as much info as possible. Was kinda hoping I’d hear some positive news of a success story despite the prognosis.

thanks again xx

aCtdancy
Posted by

It's no problem. It's good to be able to share some experience if it's of some help. Dad had 6 cycles of palliative chemo last year, ending in August followed by some reasonable scan results. He tolerated pre & post op chemo in 2016/17 surprising well but struggled a lot that last time, particularly with breathlessness, & hence, we didn't feel he could cope with more. I know exactly how you feel. Like you, I wanted to know as much as possible so I could provide the support for Dad. We had the help of a wonderful palliative care nurse which made a huge difference. I just wish that we had gotten her involved much earlier. Do you have someone like that for support? How does your Dad seem to be feeling? X

Hayley1386
Posted by

Thank you for getting back to me. So my dads feeling good, he looks well, you wouldn’t know anything was wrong with him. He has gained two stone since he was diagnosed (so if anything he is over weight lol, rather than under weight). So he’s physically strong. He’s able to eat anything he wants, the tumour in his oesophagus has completely gone so there’s no issue there.

So did you decide to stop your dads chemo because the cancer was continuing to grow or was it working but as your dad wasn’t coping well you decided to stop? Also when your dads cancer reoccurred where abouts was it? Was it in lung also? Sorry for the specific questions. We’ve not yet met with consultant re the new chemo so we’ve not met any nurses/docs etc yet xx

aCtdancy
Posted by

It's good to hear your Dad is managing not too bad under the circumstances. If he's able to eat well, that's good too.

Following the recurrence, the plan was just to go for another 6 cycles & see how things went. Scans during & after showed things were stable. By the end of it though Dad was ready for a break & was really struggling with shortness of breath. After ruling out chest infections etc. they sent him to hospital for an x-ray which showed fluid on the lung. He had been waiting for a result from a further scan in October & when we got those results, it showed the cancer had spread to his lung & liver. There were no mets previously & the recurrence was in a similar place as the original tumour, near the top of the stomach.

He struggled with pain latterly & our GP couldn't seem to get a handle on that despite his best efforts. Our palliative care nurse however was able to crack that very quickly. I guess it's their speciality! I just wish we had gotten her involvement much earlier as she was fantastic.

I feel that the chemo most definitely did it's job & kept the cancer in check for as long as Dad could tolerate it. He wouldn't have had the strength to take any more. X

Hayley1386
Posted by

Thank you so much for getting back to me and sharing your dads story. It’s such a shame that we have to be discussing this and that our poor dads have had to go through this. Once again I’m sorry for your loss.

I will try my best to remain positive. Thanks again xx 

aCtdancy
Posted by

Here if you want to talk. Stay as strong as you can for your Dad. Sending you both my best wishes. X