My husband has been diagnosed with cancer of the oesophagus

Please forgive me writing when I fall outside your parameters, but I just wanted you to know that it won't be long before someone will be able to answer your question. I hope that you will get a lot of support from What Now. There are many good-hearted people on here, and there is a Chat Room. If you have any probs getting access, just look for who is online and private message them for instructions. You can just say Hi and then watch if you find it too much of a madhouse in there. Anyway (brain not thinking very consisely at 3.07am), I just want to wish you and your husband all the best. I'm sure the chemo and surgery will necessitate some changes, but you are being positive and determined. Please ask any other questions as they come up, as it may well be that certain things like side effects from chemo are common to many cancers. xxxx Penny

Dear June,

I'm really sorry to hear that your husband has been affected by this awful disease. My husband, aged 52, also has it - he was diagnosed in January. They said it was inoperable, and were generally very negative, which caused us lots of problems. But then the treatment began - in March - and after 28 radiotherapy sessions and 10 days of chemotherapy, things are looking better. My husband may be a candidate for surgery because the tumour is only visible as a red mark. We'll know more after seeing the doctors on 21 May.
Do you know what kind of cancer it is, and where it is? My husband has squameous cell cancer of the upper oesophagus. He also had a portacath fitted so that he didn't have problems with his veins during chemo, and it was a real godsend. He also has a PEG feeding tube in his stomach, but he doesn't want to use it as long as he can swallow. So he drinks the liquid food he should get through the tube. But we're glad it's there.

I'd be really happy to communicate with you - but we're in Austria, so it's easiest through this site. There's also an email system which we could use if you'd like (My Stuff on the profile page).

I use the name Pusspins on here because I use it on other sites where there are thousands of people with my name (pat) and I could never remember the other names I gave myself. And I like cats.
Hope to hear from you - all the very best on this massive journey

P

P

Hello June,

So sorry to hear that your husband has too been diagnosed with oesophageal cancer. My hubby was diagnosed with it on 13th March this year. He has Adenocarcinoma of the oesophagus, 13cm down. My hubby has enlarged glands in the back of his stomach too and is having chemo first before an operation to shrink those hopefully in order to operate. Also, we have been told that having chemo before surgery also is the best known way (according to research) to try to reduce the chances of this particular cancer returning after treatment. So the plan so far with my hubby is chemo first, he just has had his second lot, now a wait for a ct scan to see results of that and then we will know if they will operate, or he has to undergo more chemo..

We haven't been down this road much longer than you and your husband June, but if I can answer any questions for you, I will try my best. I am sure you also feel like your whole world has turned upside down and inside out with the shock of all this, I know I did and still do feel that way, so you need to take care of yourself too as well as your hubby.

Hello June,

So sorry to hear that your husband has too been diagnosed with oesophageal cancer. My hubby was diagnosed with it on 13th March this year. He has Adenocarcinoma of the oesophagus, 13cm down. My hubby has enlarged glands in the back of his stomach too and is having chemo first before an operation to shrink those hopefully in order to operate. Also, we have been told that having chemo before surgery also is the best known way (according to research) to try to reduce the chances of this particular cancer returning after treatment. So the plan so far with my hubby is chemo first, he just has had his second lot, now a wait for a ct scan to see results of that and then we will know if they will operate, or he has to undergo more chemo..

We haven't been down this road much longer than you and your husband June, but if I can answer any questions for you, I will try my best. I am sure you also feel like your whole world has turned upside down and inside out with the shock of all this, I know I did and still do feel that way, so you need to take care of yourself too as well as your hubby.

It was good to hear from someone in almost the exact same situation as myself. My husband John also has adenocarcinoma at the lower end of his oesophagus, and like you the diagnosis just turned our whole world upside down. He is due to start his chemo on 21st May but goes to have his PICC line inserted on Tuesday. What chemo treatment is your husband getting and does he have a PICC line? I would be interested to know how he is coping with the treatment.

John is feeling really tired just now and that's before the chemo even starts. Did your husband feel this?

I hope husband's CT results are positive. Please let me know.

Take care

June

Thanks for responding Pat and I hope things go ok for your husbnd on 21st May. That is the date when my husband John starts his chemotherapy. John has adenocarcinoma at the lower end of the oesophagus and thankfully the laparoscopy and CT scan which were carried out just after his diagnosis indicates that there is no further spread, so he is a candidate for surgery.

Is your husband having real problems with swallowing at the moment? John is having some trouble but can still manage certain solid foods.

I would be happy to use the e-mail system if you could point me in the right direction as to how to use it.

Take care.

June

Thank you for responding Penny. I take it from your response that you are in a different position from me. Are you a carer or is it yourself who is the cancer sufferer? As you know this site is new to me so bear with me. I will give the chat room a try.

It's good to talk to other peopele living with cancer in their lives.

Hope you are well.

June

Hi June,

My hubby has a GROSCHONE line in for the chemo (having to look on paperwork for name!), it stays in all the time. He has five days of chemo at a time. One day in the hospital all day, then home in the evening, after flushing out and one type of chemo given, then four days at home with a pump attached giving him the second type of chemo, then the pump is taken off on the fifth day, which the nurse comes and does. He is on cisplatin and fluorouracil chemo.

He has a few side effects with the chemo, mainly with tiredness. Other side effects are ringing in the ears occasionally, mouth ulcers sometimes, aching down his right arm and chest (the side the line is in), sometimes constipation (he'll be mad at me for telling that lol!) but I make him eat soft fruit reguarly now and that combats it! The second lot of chemo has affected him more than the first lot, but it is really the tiredness that has got worse. He was getting tired before chemo started like your hubby is, but it has since increased a lot. He normally just goes and lies down whenever he feels tired, we have found that he has to, his body lets him know when it is time to rest, otherwise he can fall asleep in strange places, such as under his computer desk!

Hi June,

If you go to 'my profile', click on 'my stuff' and look at 'my inbox' I hope you'll find I've sent you an e-mail. If not, please let me know!

Hello, Supporting wife, it's nice to hear from you and hear that hubby's doing OK. Mine had much the same symptoms as yours after chemo (it's the same chemotherapy, cisplatin and 5-fluorouracil)but he got the trots after the second session - he tried to side step the constipation by taking a gentle laxative during the second session, but the effect was devastating. The mouth problem were not so bad after the second session, and we got some lip salve to keep his lips from getting dry and painful. But actually having the chemotherapy wasn't as bad as expected.

All the best

P

I suffered from this as side effect of anti-sickness drug Ondanseton, and the nurse recommended Prune Juice. Yes, it did work, and not violently so! It is available at a lot of supermarkets now, not just health food shops. Yes, cancer is certainly something which gets the unmentionable right out into the open! xxx Penny

trust you penny, but joking apart hospitals have a thing about bums
thay are obsessed with them, at the hospice where i was a nurseit
was the topic of conversation, i used to feel sorry for all the lovely
people that came in to spend time with us, mind you thay say wheres
theres you know what theres money, i should be a rich lady by now.
love linda.xxxxx

pusspins and June,

Thinking of you both, how are things going? Sending positive thoughts your way...

MY DAD WAS DIAGNOSED WITH THIS CANCER 2 AND A HALF YEARS AGO HE WAS A VERY HEAVY SMOKER! HE WAS DIAGNOSED TO LATE AND DIED LAST OCTOBER. BUT KNOW I FIGHT IN HE`S HONOUR BY TRYING TO RAISE MONEY FOR CANCER RESEARCH UK, I COMPLETED THE RACE FOR LIFE ON SUNDAY WHICH WAS SO REWARDING AND THIS FRIDAY I AM RUNNING THE CANCER RESEARCH UK BIG BREAKFAST!! I HOPE THAT YOUR DEAR HUSBAND WILL BE OK AND WITH A CARING WIFE I`M SURE HE WILL ALL THE BEST TO YOU BOTH

Thanks for the positive thoughts.
We were at the hospital today for the discussion of last weeks results and further treatment. Well, not much in the way of results, and no further treatment. Can't say there was a discussion, either. There is an improvement, we were told - but not really what improvement. There are probably still cancer cells in the oesophagus, according to the oncologists . Removing the lymph nodes just increases stress to the body, and any further chemotherapy at present could be fatal. Better leave it till later, when it will be needed. Next appointment for ultrasound and blood tests in 8 weeks. Unless we feel we have to go earlier.

And that's it. And that's it? We're not quite sure how to take this information, but I think we'll take a leaf out of Penny's book, look at healthy living and how to strengthen the immune system - and just get on with enjoying life as well as possible.

Feeling insecure and left alone after the last hospital appointment, I went to a cancer information centre - a charity - here. they got me an appointment with a retired consultant oncologist who gives his time and experience to this group. He looked at the results, and said - well,there is considerable improvement, nothing really to be seen that's identifiable as cancer.The cancer has stopped for the present; the effects of chemotherapy and radiotherapy continue for six to eight weeks afterwards. There are no signs of metastases; we can feel relieved for the moment.There is no treatment at the moment because there is no need for treatment; chemotherapy at this stage could endanger the life of the patient if they've had a serious infection ( as M has had).
Why couldn't the last doctor have said that?

Thank goodness you went and got that second opinion Pat - what marvellous news for you and Markus after all you have been through! This charitable organisation sounds an excellent idea - hope they spread to UK! xxx Penny

pusspins,

Well that is a relief! I couldn't quite understand before when you said it had almost dissapeared and your husband had been told he may be a candidate for surgery, then the news that there was nothing else they could do, it is scary how things can change so quick, so am now relieved for you both that there is nothing to be done at the moment because there's nothing identifiable as cancer! That's excellent. Im glad you went for a second opinion. If only some consultants made things a little clearer and explained things properly so that we can understand them better. Fingers crossed things continue to improve.

hello well were do we begin our world has just collasped we are waiting for a ct scan to see if it,s confined to the one area just need to talk to someone going through this as we are scared i,m am 42 my wife margaret is 52 she is been having trougle swallowing since april just told now on all the sites we have been looking at it,s the time that counts,we just dont know what to expect thanks ross got to go now cant c for tears will be back thanks ross and margaret

Hi june,

new to this site my husband was diagnosed with oesophageal cancer in april he is 49 years old it was a big shock as he as always been fit and healthy,just had a couple of problems swallowing went for endoscopy told he had a tumour.Said they thought they could operate then told us they couldnt. Spread to his cealic gland started chemo.After second lot suffered a full stroke and then got blood clot on his lung told the chemo caused the stroke so consultant stopped everything.Thats the hardest thing as that bit of hope is taken away now i feel as if my whole life as been turned upside down theres nothing we can do im sorry to sound so miserable but i just needed somebody outside the family to listen.I hope everything goes well for you my husband was just very unfortunte with the chemo.Godbless hope we can stay intouch.
lots love zita

hope

My husband has recently under gone the camera down his throat as he was suffering from not being able to eat anything due to a blockage. he was then told by the doctors he has a abnormal growth in the gullet. hes now very scared and not sure what to expect as he now has to await a CT scan on tuesday 14th Oct as they dont know what they are yet dealing with. has anybody experienced similar symptoms.
Im having to blend all his meals as he cant manage anything unless its like baby food.

my grandfather has cancer of the gullet. initially this was treatable but after 2 long years of treatment, he is receiving only pallative care now. i have only just joined this site as i need to realise i am not the only person facing this uncertainty. i have been told i have depression and that i must over come this but it is pointless saying that to someone when i think about cancer 24/7. i find that the postings on here can offer support and encouragement to people in similar situations and i really appreciate having access to this

i found that when my grandad had problems eating, we had to be really original with soup!! all kinds of weird and wonderful ingredients but they would just slip down. he also found that having soft white fish in sauces or boiled milk also went down really well. now he is relying really heavily on Ensure drinks, which are like thick milkshakes full of vitamins and proteins and available on his prescription

hi my name is jo and my husband is awaiting the c t scan after being told he may have cancer. since last week he cannot eat solids anymore and liquids are getting difficult for him but until his scan next week i can only hope he will be alright

Hi Jo,
My mother is also having a ct scan on Oct 14th for her oesophageal cancer. It has already been confirmed that she has it, and the ct scan will give us a better idea of how far it has progressed. I just found out about her diagnosis a couple of days ago. It was very difficult for me to handle at first, but after finding this site and talking to a friend, I feel much better. I was feeling much stronger earlier today, but every now and then I've had some weak moments. I really wish that I could give you a hug right now - I could use one too. I will be thinking of you the next few days and I hope that we will both have some encouraging news soon. (((hugs))))

hi rooibus how kind you are,yes i wish i could give you a hug too i will be thinking off your mum on the 14th too please give her my love i do find i feel guilty eating when graham finds it so difficult ,blending the food is helping but the worrying that hes under he just isnt hungry, i hope the results will be given to us after the scan as the waiting of the diagnosis is unbearable keep your strength up as your dear mum needs you to, and i will have to too for grahams sake good luck for tuesday loads of hugs too

My husband was diagnosed in jan 2008.
he has done three months chemo and ivor lewis surgery and then 3 more months chemo.
I have no family where we live and it has been a really hard time.
His family does not live close and we only see them once a year and they told us to cheer up thru an e-mail!
Me working full time to support us and he being sick and all the travel to the hospital, we live rurally and it is 50 km to the hospital.
He was made redundant while doing last chemo and here we get no support when I work and if I do not work then it is a minimal support that would make him end up in hospice or elderly retired people flat and we would be separated.
He has been given all treatment they can (chemo + surgery) there is no rehab here where we live and I do not seriously know if ther is something for him.
what kind of rehab do you get in UK?
when going thrua ivor lewis surgery do you get a dietician? physio?
we got nothing and the surgeon told us that a dietcian can do nothing and there is no need for it.
he has pain in his body mainly because of big weigh loss and no muscle support and still pain in his ribs in his back where they did go in.
he gets dumping effects every time he eats.
(Ivor lewis is a double surgery, take out stomach thru the bellie and then turn around and open his back and pull intestine up and hook it up with his throath at same height as collarbone - can only eat 2-3 table spoons and often)
Now I worry that I will be sick so I can't work and also for him to get new cancer.

The sun is shining out door but is kind of not for us!
I feel as if I sit in the dentists waitingroom and the next bad is to happen. me sick or him getting sick again?

hi rooibus well i hope your mum s ct scan was successful unfortunately grahams broke down so couldnt have one, got another one next monday but whose to say that it wont break down again, we are hoping that if they get it fixed today the nurse said they will try to fit him in tomorrow as he also has a bad heart and we dont know if he will be strong enough to cope another week. why when cancer research has been going on for decades cant each hospital have at least 2 scanners in case one does break down good luck to your mum loads of hugs too

Hi Mrs, i read your entry on the stomach cancer forum and have posted a reply, not going to re write it as its long! Hope you and your hubby are doing a bit better - seems like you have had a really crap time. Sending some reiki with this to you - keep strong.

My husband was diagnosed in jun 2008.......just after his 2nd operation for bowel cancer..
he has done three months chemo and ivor lewis surgery spent two weeks in itu a week on a ward..then
they sent him home last thursday night....
I hope you are all doing well....
Big Hugz for you all (((((((((((HUGZ)))))))))))))))))
Cally xxxxxxxxxxx

My husband has been diagnosed with stage 4 cancer which has matastisized to the liver ,stomach and right lung. He has started chemo once every two weeks. We were told no surgery or radiation would help. Is there any hope out there? This has been devastating for my whole family. He has had one round of chemo - oxiliplatin and 5fu. Has anyone been through this?

Hi Jeano - I was scrolling through recent entries and came across yours about your husband. My partner has cancer of the oesophagus too, and has just started chemotherapy. After a CT scan we were told that it has spread to his liver. We don't know how things will work out either, but I would like to say hello, and to wish you all the best. Doublebass.

Although things looked better in my last post further up, my husband's oesophageal cancer has spread to the lungs, too. a futher course of chemotherapy has been suggested, I just hope he can keep well enough to have it. So hello, the boats are pretty leaky, but they're still floating. Let's keep them that way.

all the best,
Pat

IHi - I was glad to hear from you. I am sorry about your partner. Michael had his first round of Chemo. He is having the second one December 8th. He has developed a cough and fluid is accumulated in his right lung. He had it drained and seems a little better.
What a nightmare. He has not been given much hope and the uncertainty is really draining. Thanks for responding and please keep in touch. Hope your partner is doing well.