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.

MERRY CHRISTMAS WOULD WELCOME SOME ADVICE PLEASE

freefaller
Posted by

Hello,

I am an occasional visitor here from the prostate cancer group to ask about my brother-in-law's cancer.  He had a huge operation on July 30th 2017 after having had a few rounds of chemo therapy before and then some more chemo after the op.  He is now losing weight again and looking very poorly, is very fatigued and our sister cannot talk about him without a tear in her eye.  Our sister keeps saying that there are no scans or anything to find out if his cancer has come back because of the trauma caused by the original huge operation.  My brother who lives away in South Africa is wondering if they should ask to see the consultant oncologist again and push to get something done?  Can someone tell me what they would advise in this situation.  Also is there any medication he should be on.  I think the GP has prescribed him protein drinks such as "Ensure".

Thank you.

Hope you all had a good Christmas and here's to a good New Year.

All the best

Des

latchbrook
Posted by

Hi Des and a merry Christmas to you too!

I'm afraid I can't help with your questions, not having had this type of cancer, but I noticed that your post hadn't had any responses. This could be because the person with the right experience hasn't seen it yet. By replying to you it will 'bump' your post back to the top of the first page where it'll be more visible.

You could also post your questions in ask a nurse and one of the specialist nurses will get back to you within 2 working days. However, they can't comment on treatment in other countries but perhaps could answer your concerns in a more general way.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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BrentS
Posted by

Hi Des. 
I’m assuming that your brother-in-law had oesophageal cancer and an Ivor Lewis op. Gaining weight and stamina after this surgery and the gruelling chemotherapy can be a real struggle.

Scans are more often than not thought to do more harm than good unless there are symptoms that would warrant them. So I asked what kind of symptoms? The upper GI specialist nurse said weight loss or fatigue. So it sounds as if your brother-in-law should contact his specialist nurse at the hospital for advice, rather than his GP. His symptoms may just be part of the recovery process which takes many months - up to a couple of years, in my case. But I’m sure they would be able to offer advice or further investigations if necessary.

I have always said that this journey is harder on friends and family than the patient, just because of the emotions involved. So often people want to fix a problem or retell anecdotal tales of unhelpful instances of success or failure. So be there for your sister and her husband with practical help, which people find so difficult to ask for. 
I do hope that your family were able to enjoy and relax during at least some of the Christmas holiday. I wish you all the best for the coming New Year.

Counting the days, making every day count.

Brent

Helen1624
Posted by

Hi Des just seen your post, i would advise he goes back to see his consultant as any changes need to be looked into it may something as simple as not getting the right vitamins due to lack of food, I have heard of people having vitamin D injections. Your sister is right they won’t scan patients on a regular basis unless there is any problems as they say if it has come back there is not a lot that can be done !!! Unfortunately we thought my husbands had gone for good but 2 years after the massive surgery he passed away after being well and off treatment for 18 months, it all happened very quickly from being well and enjoying our holidays to 7 weeks later a recurrence and passing away. Get checked out if it is anything it’s a way of extending time. I don’t like putting the full story on here not the time or place but feel free to contact me if anyone needs to. 
good luck  Helen xxxx

Zappaman
Posted by

Hi Des, sorry to hear about your brother in law. I didn't have chemotherapy so I can't comment on the effects of that. As Brent asks,did he have the Ivor Lewis surgery? Had he lost a lot of weight prior to the surgery? I know I had lost about 5 stones over a period of months before I had surgery. I found the advice leaflet I was given about diet when I left the hospital wasn't very helpful. Is he eating and what is he eating? Full fat milk fortified with marvel powdered milk for drinks, and other sources of fat and protein are essential for gaining weight after the surgery. Healthy eating won't help him gain weight and eating small amounts by having about 6 snack size meals a day is the norm. Did he have a feeding tube and food supplements pump when he was discharged from hospital? I was on the food supplements pump for about 3 months having an overnight feed to get nutrition into my body. Once my weight had stabilized I came off the food supplements for a month and didn't lose weight so I didn't need the food supplements anymore. Sorry for all the questions but it's difficult to give advice based on the information you have given. Please feel free to ask anything and people here will try and help. It can take a long time to recover from the surgery and treatment. Good luck to your brother in law and your sister. Kind regards Frank.

freefaller
Posted by

Thank you all.  Both our brother and I have told our sister that we are there when she needs us - she also has family nearer where she lives so I am sure she is getting all the help she needs.  Again when I phone her this week I shall make sure that she knows she can call me any time night or day and talk things through.  We realise there is nothing that can be done if the cancer has come back but sometimes we feel they are not pushy enough and don't ask enough questions of the right people to get things done.  As you say it can mean extending life - if only for a short while so should be done.  I have other  problems myself and also had a wisdom tooth out just before Christmas so am fully booked up with medical and dental appointments for the next 2 weeks but am going to make a big effort to go and visit my sister and brother in law as soon as I am free - may even pop down there between the last two appointments as there is a 4 day break and can go to my last appointment on my way from their place - we live about 3 hours traveling time apart .

Once again thank you for all your advice - it was pretty much what I thought I should say to them but wanted to check it out here first before persecuting them with my well meant advice.

Here's to a HAPPY AND HEALTHY NEW YEAR FOR US ALL.

Des