Hi Rosemary, firstly im sorry to hear your dad's diagnosis. My partner who is only 52 was diagnosed with this hideous desease in august last year he has T4N3M1 which is basically a 4cm tumour in his esophagus with lymph nodes and one solitary Mets to his liver. It's a long road ahead, Stu was told his is not curable but hopefully treatable, he has had 2 stents fitted as the first one moved and he was not and to eat anything without being sick and excessive stabbing pain in his chest plate area. He started palliative chemo in September of IV cisplatin every 3 weeks and twice daily capecticbine at hind for 21 days, he finished the chemo last week and has a CT scan  booked for tomorrow and results on the 8th feb to see if the chemo has done anything. The most important thing to do is to stay positive and try to ensure he eats well. I've sort a second opinion as well myself with regards to the treatment they offered Stu, just to see if NHS was the same as private which it was. Stu also sees a nutritionist Jane Clark via zoom every 2 weeks which has helped him no end. Hope this helps we are all in this together but keeping positive and believing it can be controlled will help, if we look back they say AIDS isn't curable however these days it's treatable, and this is what we have to aim for with their diagnosis, I'm also looking into THC oil at the moment as as from this week Stu will not be on any treatment at all only his pain relief and from looking at research THC oil can actually shrink some cancers and in some cases kill cancer cells, expect a long road with many ups and downs but this is perfectly normal with what you are going through, please keep in touch and fix bless 

Claire 

Hello Claire, 

As you mentioned that you are looking into THC at the moment, I thought I should mention that cannabis oil containing THC is illegal in the UK without a prescription and is currently only available on a case by case basis to relieve symptoms for those with epilepsy, adults with vomiting or nausea caused by chemotherapy or people with muscle stiffness and spasms caused by multiple sclerosis (MS). You can read more about this on the NHS website just here. There is more information on cannabis and cancer in our blog.

It's completely understandable you want to do all you can for Stu but any alternative therapies being considered or used should really be discussed with a medical professional first.

Our cancer nurses are available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m if you'd like to discuss this with them.

Kind regards, 

Lucie, Cancer Chat Moderator

Hi Lucie, 

Thanks for that information:-) 

Hi Claire, 

Thank you so much for taking the time to reply. I’m so sorry that you are having to go through this as well. We are also seeking a second opinion. Thank you so much for the advice on the nutritionalist and words of encouragement to stay positive. 

I wholeheartedly hope the CT scans show the chemotherapy has been effective in reducing your partners tumours

I will keep in touch x

No problem at all, I'll be honest the private nutritionist we've used has been fab and really helped with his medication as well such as suggesting for Stu to stay on dexemethasone at 4mg to help increase his appetite and also use the anti inflammatory effect, his oncologist agreed with this however we had to suggest it to him. The dietitian through his hospital has been Crap really and was just happy for Stu to remain on soft food and fortisips !! It's hard during this pandemic I don't know about your dad but Stu hadn't still had any face to face appointment with his GP even after he was diagnosed, the Macmillan nurse who' is also the the upper GI specialist nurse has also been useless little contact at all to be honest, so I've now bypassed then and referred Stu myself to his local hospice, it's not end of life care by any means but they are far more helpful on the phone 24-/7 for support if it's needed and they also take care of Stu meds now. The only thing I would say is make sure you are on it with everything and don't be frightend to ask for things from your oncologist, unfortunately your dad and Stu are just a number and unless we push things for them especially in this pandemic things get left. I'm lucky I work in healthcare so work along GP's who I've also asked for advice on things with regards to this cancer. Keep your fighting spirit on and remember statictis about prognosis  are exactly that, and they don't take into account people age, background, and people own positive mental attitude, I really believe in keeping positive as if the brain gives up everything else will follow that too xx 

we got a second opinion from a professor Stebbing via zoom at Harley street, one Stu had had his first CT scan after 3 months of chemo, he charged £400 for half and hour but certainly well worth it for piece of mind and to be aware of any other treatments if applicable, he is the one who also suggested the nutritionist as well, 

keep strong xx

Claire I cannot thank you enough for all this information, help and advice. We only received the diagnosis on the 20th a few days ago and start of chemo has not yet been set out to us. But even in the diagnosis appointment itself we felt like a number, given devastating news and then ushered out. I cannot help but feel really upset that we will get no more hope even with a second opinion. 
We are trying all we can to keep my Dad positive Xx

Don't give up hope there is always hope with anything I life, it's a massive curve ball we've been thrown that's all, and we have to play the cards we are dealt. I think you need time to take it all in.  Have you another appointment booked to see the consultant at all to discuss your dads treatment options ?? If not don't be frightened to phone and pester them one as that's what I had to do, initially it took a little longer as they had to look at Stu CT results at MDT and discuss what they feel was the best option for him. When we did see the oncologist to discuss treatment I asked for a foundation one test to be carried out on the biopsies that they took as this looks at the cancer cells to see if they over express certain proteins which can then reflect what immunotherapy drugs can be used if required at a later date after chemo. At first the oncologist kept saying No as it's not going to Change the route of treatment they go down, however I insisted on this being done and in the end he agreed and done this test for me, with all the pandemic going on I'd rather be infront and get this done so it's there as and when needed.  I also forwarded this foundation one test onto a professor who understands cancer genetics and advised different treatment options for Stu further down the Line. I would definitely ask the oncologist for a HER 2 test on your dads biopsies, and if they refuse be persistent and it's your right to have one done anyway, but again unless you know these things who wouldn't have a Clue. 
It's a lot to take in and I'm thinking of you all your journey is just beginning but stay strong and positive in your mind set xx

Hi Rosemary, 

welcome to the ever growing ' Oesophageal club', one you'd no doubt rather not be a member of. I only joined in late July after we got a shock diagnosis. My 56 yr old husband went for an endoscopy for reflux symptoms and bingo this diagnosis. It make me wonder if this type is 'catching' there are so many of us on here!! All with diagnoses out of the blue. Look at my previous posts to join the board we post on.

There is one guy on here who had a similar diagnosis as you guys and I think he is 7 years post diagnosis.

Mine has had chemo - with a very good effect, the tumour had shrunk down a stage,and is now post op. We go tomorrow to find out if more treatment needed at this time.

As for 'private' services. I have to say when the chips are down NHS seems to be the best. The private sector will cater for anything you desire - for cash that is, so I would stick to one stream/team.

Although services differ area to area our NHS MDT have been utterly incredible- talk about life saving. I find it difficult to even articulate what I feel for them all (all good stuff).

i could blather on for hours about our 'journey'. Ask away, but I can only be an 'expert' in what has happened to us.

best wishes

Hi Hilts 

Thank you so much for taking the time to reply. I think o know the guy your taking about and I think there diagnosis was very similar, T3N3M1 and it has been a huge source of hope. 

Its also really good to hear that the chemo has had a positive effect on your husband. Please may I ask which chemotherapy combination your partner was on? 
 

We are being given our treatment plan today-just want to give my Dad a fighting chance.

Xx