Newly diagnosed Oesophagus cancer

Hello J , I am so sorry to hear this news ( we were briefly in touch in Sept /Oct) . He is so young and this is just a horrible disease and no one deserves to go through what you and many people on this site are going through . On the OPA site someone has posted this info "

"There is currently a new UK Drug Trial due to start with 200 patients and 2 of our local support group members have just signed up. They are both palliative and have not been able to have the operation The study mirrors a Japanese trial to compare results. There is no placebo so your husband if accepted would get the immunology drug called NIVOLUMAB. Please contact your oncologist or consultant to see if your husband would qualify for this new treatment " 

Maybe it is something worth looking into ? 

Also the Proton beam radiotherapy ? https://institut-curie.org/page/digestive-cancers

I know many will think this is clutching at straws but I would want to try anything and everything that could make a difference .

I am sending you a massive hug and cyber succour . 

Hi Diana and Eileen! 

Thankyou bothfor your replies.

Hope I didn’t mislead you about stents Eileen, first one worked really well for 3 months and enabled my husband to eat really well. It’s only since his last chemo that the problem has arisen. The problem is we are waiting for a CT scan to determine the success of the chemo. Not sure if the problem has arisen because chemo has worked and tumour has shrunk causing stent to slip or tumour has grown over top of stent. Once again the waiting game is the problem. Scan end of January. I am so strese3d because apart from not eating he is so tired and lethargic. Quality of life has really deteriorated which makes me think the chemo hasn’t worked.

Diana, great to hear from you again.....how are things progressing for you and your husband, been wondering where you have been! Hope it’s posi news? Thankyou for the suggestions will certainly look into them, very useful. As you say need to look into all options. Look forward to more news. Many thoughts.

Hi J , Really m crossing my fingers that chemo has shrunk the bastard and thats why stent has slipped ! He only finished the chemo in mid December and it does take its toll as everyone knows so the tiredness is very likely because of that . My view on the tiredness is that even whilst you sleep your body heals and is fighting ,so its not a bad thing . We are in these weird pre op days of trying to fatten up and get fit ( sadly I am in tune with the first option mostly ) Tim is doing well , eating and putting on weight ... he is walking the dog and being reasonably active but then some days he is wiped out and sleeps and sleeps . We both had a nasty cough cold thing during xmas and I am not sure he has bounced back fully from that yet ... Operation is scheduled for the 6th Febuary , lots of trepidation and fear although I know he is fortunate that it has been offered the surgery and I am awe of you and others coping with other scenarios , amazing courage and strength you have makes me feel guilty . I am sending you my best quality positivity and stay in touch .  

Dear Eileen

Had a similar experience - detailed the exact symptoms to the GP's (usual merry go around of different ones) who gave me tablets and more tablets. Finally on my insistence had gastroscope - it was botched. Finally picked up 6 months later with barium swallow.  There seems to be little training and awareness among GP's. There focus seems to be to minimise spend and fob most patients off.

Your gastroenterologist seems as incompetent as mine was - guesswork is hardly a substitute for real investigation.

You need to find out what type of oesophageal cancer she has and do all your research - there is a wealth of information online. Surgery is usually not an option until the tumour has shrunk so this is usually treated with chemotherapy first.

Cancer research and the American Cancer society in particular has extensive information on everything about it. It is worth your while to read into these. They explain everything about the cancer, how it's staged, treatment options, what to expect, etc.

All the best

Hi Diana,

So pleased that your husband is able to have the op, I know it’s going to be a long haul but at least you have some hope. Reading through the many posts there is a lot of positivity and staying active seems to be very important. I am finding life very difficult as we are unable to continue what was a very busy and active social life. Our lovely caravan hasn’t moved since August and our main hobbies of dancing and walking have also taken a massive hit.....I can assure you I am doing my best for ALUN and my family but i don’t deserve your admiration as I am a wreck inside. However we have to keep going and communicating with others who understand what we are going through helps. We have had an interesting day today discussing his progress and the hospital are quite happy with what he is eating so that has reassured me. This afternoon we finally met our Macmillan nurse who was very helpful and gave us some new strategies to try whilst waiting for the scan. I feel slightly more positive but know it’s only time we are buying. So depressing. Anyway no more winging . Are you still in France or are you being treated in the UK? We are in Cardiff and it’s very cold which also deters my husband from venturing out. He really suffers with cold since the chemo. Stay positive and active and fingers crossed for February. X

Hi J , Yes we are in France and having our treatment here . It is second to none and I cannot fault the follow up , care , and humanity every single health professional has given us from day 1.

I feel for you , I really do , there are days I  wake up and think " this is my life now , its all about the cancer , it sucks you up . But yes the operation is a good thing , we are lucky , I know that and I really am not complaining , its just a life changer that has blindsided me to be honest .

I am glad you had a good day , I find the practical stuff helps , it distracts and somehow you feel slightly less useless . 

Its warm here but then we are very far south ,almost in Spain,  but still it seems even warmer than usual for January and that is a bonus  , blue skies and sunshine are good for the body and soul .

Hopefully it will warm up for you Cardiff  and the first signs of Spring will start soon and the scan will be better news than you are thinking , I really , really hope so . 

I will let you know how things go . 

Aside from copious red wine consumption I am reading lots of thriller novels ( the un put down able sort ) it helps a bit to escape  ....x

My first visit to the doctor for swallowing difficulties was a joke. I was 57 and he said that it's down to muscles getting weaker as I was getting older. He proceeded to draw small squares of an inch reminding me to cut meat into squares that size and chew 30 times before swallowing ! I saw another doctor a couple of weeks later who immediately arranged for me to have an endoscopy. It was done a couple of weeks later and within 40 minutes I was told that I had a tumour. I declined the chemo and radiotherapy and went for the surgery. That's just over 15 months ago and I am still here and enjoying and adapting to my new life. Kind regards Frank

Wow....I am so jealous! we love France and have spent so many wonderful holidays in our caravan over there.  We often travelled down to the Bay of Roses passing through Milau and sitting in jams on the bridge! We loved Barcelona,  Carcasson and of course the Pyrannes. Also visited Royan, Bordeaux Dordogne and the Vendee. Even spent our honeymoon in Paris. It is a beautiful,crisp sunny day here so am hoping to get out for a short walk in the sun if I can motivate my husband! Enjoy the red wine while we eat our Welsh cakes! 

Hi running lady 

Im sorry your family has to go through this but im also glad yours mams cancer is only contained in her osphegus.

If i rewind my life back to this time last year my dad was also struggling to swollow food and after all the tests chemo ect my dad finally had his operation in Aug 2017  at the RVI in Newcastle which was a very long day for all of the family...... basically what im trying to say its going to be a tough yr but really there is light at the end of the tunnel for your mam. 

My dad is 5 month post op and is now walking 2 miles per day , eating , drinking normally and enjoying the occassional pint of beer. 

I really send my good wishes to you your family and to your precious mam. But keep positive and keep looking at the positive stories on here and read them to your mam.....she will get through this ❤❤❤

Dear Running lady

Been thinking about your mother. I was offline as I had to have hip replacement surgery (I am 54) to remove the mets from my pelvis and I ended up in terrible pain due to excruciating sciatica. The surgery gave me 2 herniated discs (weren't that way before) and then I had to start radiotherapy to mop up any left over cancer as it just debulks the tumour. It set off such terrible nerve pain, I cried and cried - it was agony. They put me under pain management and it's helped. I previously went through 8 chemo,  25 chemoradiations, an oesophagectomy in Sept 2016  (I had grade 3 neuropathy during chemo and every side effect going and mucuositis, more nerve problems etc during radiotherapy and more side effects) and although I had minimally invasive oesphagectomy and recovered fast the first two months I was in such pain I begged to die every day (needless to say I had nerve pain from where my lung wouldn't reinflate and my halved stomach rests on my lung, they also find a skip lesion during surgery meaning I was under for 12 hours, had to do a neck join and damaged my nerve for my vocal chord). i have been through the mill to try to beat this cancer and just as I was given the all clear it was found it had moved into my pelvis. I did so well after my surgery I was skiing within 5 months. I will never ski again. I'll be lucky just to get a few years now. All my hopes were dashed. It sounds from your last post yours were too. I am so sorry.

I don't think 5 days of radiotherapy could possibly kill off the cancer considering what I went through and it still managed to bypass the surgeons scalpel the chemo and the radiation. But at the same time I wouldn't wish the pain and agony I went through to try and survive for the sake of my 12 year old son and my husband. I had a tough time of it physically even though the doctors said I was the most mentally tough patient they've ever had. They could barely believe all I've been through. I am now pretty frail and my spirit is nearly broken. I think if I was older like your mum I would probably not only not have tolerated all of it but wouldn't have chosen to do so.

The type of cancer (whether SCC or AC) determines what treatment you are given as well as your state of health. No surgeon would have operated on mine due to the very complicated location my tumour was in and even then only two surgeons would take it on (probably the two best out there). I think it is sad they just did 5 days of radiotherapy - so pointless (usually this is a pain killing dose)and have not fitted her with a stent or done anything to try and help. Without chemo (the main purpose of which is to debulk the tumour) I don't see how they could possibly expect her to survive. I am so perplexed by the behaviour of many GP's (mine cost me 6 months) and oncologists (seems too many of them don't really care that much and can do whatever they want with no accountability.

I fear to hear how your mother is and how sad this whole business is. I keep thinking about her and how she just seems to have been wasting away. I know how I struggled (and I am very petite) with my weight and how hard I battled to keep my weight within living range. I cannot imagine what state she must be in. All I know is I would not wish on her what I and many others have suffered. 

Some are lucky and seem to breeze through treatments and despite unhealthy lifestyles and being overweight and drinking and smoking survive. Others like me (the epitome of clean living) - well there is no explanation. The sad thing is that this cancer is just so random and so is whether you survive. Some tumours respond well as do some bodies, others don't! Some get lucky and most don't.

Enjoy every precious moment with your mother ....