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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

General health

DH has an oesophageal tumour...

30 replies

Inaminutenow · 22/02/2013 21:54

DH is only 51, we've got two DS 6 and 3 and he has two grown up kids 20 and 23. He'd developed problems with swallowing and lost a considerable amount of weight. Has now been diagnosed, undergoing further tests to see the extent of it all - I'm terrified. Overall general prognosis doesn't seem very good. Have you any experience of this?

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goingmadinthecountry · 22/02/2013 23:05

Sorry, not a clue but wishing you well and hopefully bumping for you.

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FernandoIsFaster · 22/02/2013 23:17

My grandad had this, and survived for 5 years after op to remove the tumour, and he didn't actually die from cancer so was doing well in that respect. He did have to have voice box removed, but that was only due to the location of his particular tumour and not par for the course.

I hope that they have found it early and that you are getting lots of rl support.

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Delayingtactic · 22/02/2013 23:27

Ok it's early days yet. Information will probably come in really hectic fast bursts followed by agonisingly long waits before the next burst of info. I take it he's awaiting further imaging? Was the diagnosis from a tissue sample taken at a camera (endoscopy) test? If not then that'll need to be done.

All the information will be gathered and then discussed at the next MDT for oesophageal cancer - when all the specialists get together either once a week or every other week to discuss what the best plan of action is. It might be chemotherapy or radiotherapy, surgery to remove it or a stent to help with his swallowing. Everything depends what on what the tissue sample showed and the images show. Don't try and second guess what they are going to say - but ask for the number of the specialist nurse. They are absolutely amazing at hand holding and talking you through the process.

Take time to look after yourselves, talk to each other and remember that you both might get irritationally angry or upset at really minor things. Maybe GP or good friends can have your little ones for a wee while just before or after the final meeting with the consultant just so you have a bit of breathing room to talk things through?

Good luck

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Inaminutenow · 22/02/2013 23:28

Thanks both. We're in limbo while we're waiting for the tests and test results... Hoping that it hasn't spread! It's terrifying.

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Inaminutenow · 22/02/2013 23:30

Thanks Delaying, it's hard not to think the worst.

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Flojobunny · 22/02/2013 23:32

Don't know anything about this buy offering a unmumsnetty hug

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Inaminutenow · 22/02/2013 23:32

Yes, biopsy taken, CT scan on Mon, will have another endoscopy with ultrasound and then MDT.

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Twosugarsplease · 22/02/2013 23:39

Can I just say I'm here ! Dh currently waiting for operation for highly suspicious growth in thyroid, op is in 2 weeks, I've been terrified and a bag of nerves since November, we have 4 dc's youngest is 3.
Feel free to sound off x

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gingeroots · 23/02/2013 09:29

Have just seen this thread OP ,so sorry you're going through this .

My brother had cancer at the back of his tongue and had surgery 2 years ago .
He's good now - speech and eating 99% restored .

His was spotted by dentist and presented as a mouth ulcer that wouldn't heal .

Delayingtactic's post gives good advice - the specialist nurses seem to have always been the ones to give most help .

I don't know if this www.mumsnet.com/Talk/general_health/1647229-chat-and-hand-holding-for-those-of-us-supporting-a-DH-with-cancer-new-thread-for-the-new-year?pg=1 thread would help .
Maybe not to read but to vent on ,lots of people at the early investigative stages .

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MummyDoIt · 23/02/2013 09:48

I'm hesitating about whether to post here because I have a lot of experience of this but not with a good outcome, I'm afraid. However, I always preferred to know the facts and what I was dealing with so I'll be frank. If you'd rather not read on, I understand.

My dad was diagnosed with oesophageal cancer in July 2002 and we were told not to expect him to be there at Christmas. Against the odds, he reacted incredibly well to the first round of chemo and went into remission for four years. Unfortunately, it did come back and he started chemo again.

At the same time, my DH was diagnosed with the same thing. I couldn't believe fate could be so cruel but there you go. Dad's tumour was high in the oesophagus, DH's was at the bottom, spreading into his stomach. Dad didn't have too much trouble swallowing until the very end and, as a result, didn't lose a lot of weight. In fact, Mum put him on a high-calorie diet and he gained weight. DH lost weight rapidly as his swallowing was badly affected from the beginning and we struggled to get food into him. However, given that Dad had done so well with his first round of chemo, we were optimistic about DH but his first course only bought him six months before the tumours started to grow again. They tried two more courses, plus radiotherapy, but it didn't work. We lost Dad in November 2007 and DH died in August 2008.

In both cases, the cancer had already spread to the liver and lymph nodes at the time it was diagnosed. Unfortunately, this is quite often the case as oesphageal cancer doesn't show symptoms until it's already quite advanced. Our consultant's words were "if you're going to have cancer, this is one of the ones you don't want to have." Because of the secondary tumours, they ruled out operating on the oesophageal tumours in both cases.

I'm so sorry you are going through this and I wish I could give you something more positive. Please do remember that my experience was some years ago and things move rapidly so there will almost certainly be more options and treatments available to you now. I will also leave you with a positive outcome. My mum has a neighbour, well into her 70s, who had oesophageal cancer many, many years ago. She had her tumour (and part of the oesophagus) removed surgically and has been cancer-free ever since.

If there is anything at all I can do for you - advice, a shoulder to cry on, someone to rant with about the unfairness of it all - please, please PM me. Sending much love your way.

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digerd · 23/02/2013 11:59

Cancer is always unfair. It all depends on what type of cancer, the stage it's at and, if spread, to which organs. Also where it is in the particular organ(s) Some people are lucky and others not.
I lost my DM - not from cancer, she was 83- and DH within 8 months of eachother. DH from cancer. He also went into remission for his, but it came out somewhere else just a year later. He was told with the original that 5 years at the most before it would come back. Sadly he died just under 3 years after his 1st diagnosis and 2 x 6 months cycles of Chemo during that time. His was also inoperable due to having spread.
Wishing your DH all the best of LUCK in the world for his CT scan and successful treatment OP.

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MrsMorton · 23/02/2013 18:27

My grandmother had this and had an oesophageal stent and radiotherapy. She did really well for about 18months and then I think she just got tired (she was 86) and slipped away. If it had been 10years earlier and my grandfather had still been alive I think she would have been more proactive but she wanted minimal intervention.

She had "heart burn" for years which turned into barrets oesophagus.

So sorry for you, I have no proper information but just wanted to share my experience.

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crazymare20 · 23/02/2013 21:01

I also have experience of this but unfortunatatly not a good outcome. It was the op that went wrong with my dad. All I will say is if he has to have an op please be on your guard for any sign of slight detioration. Don't be fobbed off by the hospital an if in doubt take him back to hospital.

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Inaminutenow · 23/02/2013 21:30

Thanks all for your posts, it means a lot that people who don't know me take their time to respond! Tumour is at the bottom of the oesophagus, 6cm approx. I've told a few friends who are also really supportive. I'm worried though as I'm not from the UK originally and all my family are abroad, but we'll cope, we'll have to. Whatever comes back from the CT scan, I'm also really worried about telling the children (6 and 3), because this will have a huge impact on the family. Why oh why? I'm just so angry as well...

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Inaminutenow · 26/02/2013 23:26

There is hope! CT scan apparently indicates no spread to the liver, looks more of a stomach cancer that's gone upwards into the oesophagus ... Slightly relieved that something can be done, and I know it'll be bloody hard re chemo and surgery to remove part of the stomach and oesophagus, but it's much better then the dark few days we've had since the initial diagnosis.

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gingeroots · 27/02/2013 07:02

Thank you for updating .

So glad to read your news ,thinking of you both x

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MummyDoIt · 27/02/2013 07:03

That is great news. I won't pretend that your DH (and you) aren't in for a hard time but at least there's a light at the end of the tunnel. Wishing your DH a good recovery.

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Inaminutenow · 27/02/2013 21:53

Thanks both, it is a relief, although by no means out of the woods, but up until yesterday all that was going around in my head was 'what if it has spread and they can't do anything'... At least now something can be done. Endoscopy with ultrasound on Friday and most probably laparoscopy as well sometime soon. Dr has mentioned surgery and chemo, but wasn't able to tell yet which will be done first. Keep your fingers crossed for us.

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Rowlers · 27/02/2013 22:01

Absolutely got my fingers crossed for you and DH. X

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FairPhyllis · 28/02/2013 16:08

Hi OP

My granny had this - she'd had decades of heartburn and developed a tumour at the entrance to her stomach. She couldn't have surgery because of her age (86) but she actually tolerated the chemo very well and didn't lose any weight on the diet my mum devised for her. Sadly she died about 11 months after she was diagnosed, but this was not due to the cancer - the chemo was working - she picked up an infection in her nursing home.

I would have thought your DH would be young and fit enough to have surgery and deal with chemo/radio if those can be offered to him, so he is in a relatively good position on that score. Figuring out the best way to get as many calories into him as possible given what he can swallow will make a huge difference - Grandma had those high energy drink things prescribed for her by the hospital, and we kept an eye out for things she could eat that were high calorie. She was a particular fan of the little trifles in a pot that M&S do. You should get a chance to speak to a dietician/nutritionist at some point, but do ask if nobody mentions it.

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Inaminutenow · 28/02/2013 20:34

Thanks!
Fair - DH's cousin is a nurse and has already given him some Complan chicken soup; he's making an effort eating food throughout the day. Dr has also made a point about him having to eat to have enough energy for the treatment etc. I'll have a look for other bits and bobs, including high energy drinks and trifles!

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FairPhyllis · 28/02/2013 21:12

Oh yeah - it was Complan that she had. But anything you can do to load food up with calories is good - full fat milk and sugar in tea etc. Custard was also good for my granny, plus creamy soups, and if he can swallow things like mashed potato then make it up with butter and milk. I think we also used to give her little sponge and chocolate sauce pudding pots that you heat up in a microwave - you can get them in Sainsburys I think.

The chemo nurses were astonished that my granny didn't lose any weight during chemo, but it is possible if you spend some time thinking about how to make everything as calorific as possible. Oh and the chemo she had was mostly in tablet form, so if he does have chemo it will not necessarily involve being on a drip in hospital all the time. But it will depend on the treatment plan they decide for him.

The other thing to watch out for with oesophageal cancer is that because of the swallowing difficulties you can be prone to aspirating food - having bits of it go down the windpipe, which can cause infections. Am pretty sure this is how Grandma got pneumonia. So see a doc quickly for anything that looks like a respiratory infection.

Wishing you all the best.

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gingeroots · 28/02/2013 21:30

Smoothies ?
I had a delicious vanilla bean and maple syrup one from M&S yesterday .

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Inaminutenow · 02/03/2013 20:55

Endoscopic ultrasound seems to show that lymph nodes (?) in the area are involved, so now booked in for a PET scan, hopefully sometime next week. So the issue of whether anything has spread or not is still hanging over us... As far as I understand, if there is 'distant spread', there won't be a cure?
It's only been just over two weeks since the initial diagnosis, but it seems this has been going on for ages, I just want to have a final picture of where things are at and for some kind of treatment to start! DH has now been told he needs to try to put some weight ON, when 6-8 months ago he was obese. He joking about having bingo wings, but I don't really know how he's feeling inside. I'm rubbish at talking to him, not sure how to support him at all.

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plim · 02/03/2013 21:11

Hi my auntie had an oesophagus tumour, was very high up and she had secondaries in her lung. They looked at surgery, a stent and chemotherapy but she was too weak (had Los a lot of weight), she had a feeding tube into the stomach through belly and lived for 6 weeks from diagnosis. She was 72, frail and very thin and the main problem was the height if the tumour. If lower they can do quite a bit I think. Good luck and hug xxxxxx