Surviving Oesophageal Cancer

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Hi , I’m new to this site but wanted to share my experience of living with oesophageal cancer. I realise that I’m one of the lucky ones in that my cancer was caught relatively early and was therefore operable.

I was diagnosed with cancer of the oesophagus in February 2007 and after many tests and two sessions of chemotherapy I underwent an Ivor Lewis operation, which is major surgery to remove the cancer, and lasted around seven hours. I responded well throughout and remained only five days in intensive care before being moved to a general ward and released a week later.

Since then, I’ve continued to do well but suffer from dumping syndrome as a result of the surgery. This is an unpleasant side-effect that causes fatigue, sweating and nausea after eating. Also, I now have to have vitamin B12 injections every three months as my body can no longer process this essential vitamin.

All in all, I feel ok and have remained positive all the way through. I realise I’m extremely lucky and count my blessings every day.

I’ve read so many negative reports about this type of cancer so I felt I had to share something positive for those of you who have, or know someone with, Oesophageal cancer.

All the best

Crystal

FormerMember over 15 years ago

Sorry to "butt in" on this thread, but based on the subject line, I hope this is an appropriate place.

Does anyone know/have experience of inoperable oesophageal cancer? A relative has been diagnosed with this. The position of the tumour means they're not going to be able to operate, and treatment will be radiotherapy and chemotherapy instead.

Has anyone heard of this before? Everything I find online talks either about removing the oesophagus, or giving radio/chemotherapy to alleviate symptoms in the terminal stages.

I know the best thing would be to speak to the medical team, but I'm not in a position to do this.

crystalclear over 15 years ago

Hello Ellie
I’m so sorry that you find yourself here and hope that you can find the information and support that you’re looking for.
Generally speaking, there are various treatments for oesophageal cancer, these being surgery, chemotherapy and radiotherapy or a combination of these, and these are dependant upon the stage of cancer, its location and size and also on the general health of the patient. The surgery is mostly performed with a view to hopefully securing a ‘cure’ of the cancer and usually this means the removal of the oesophagus, or a large part of it. Sometimes, if the tumour has spread to nearby organs or major blood vessels it can be deemed inoperable, in which case the treatment plan is a chemo regimen, sometimes combined with radiotherapy. The following link from the Macmillan site will give you far more details than I can provide and I hope that this will be helpful to you:
http://www.cancerbackup.org.uk/Cancertype/Gulletoesophagus

There is also plenty of info available on the links below, with the Oesophageal Patients Association being a good source of support.
http://www.canceractive.com/page.php?n=168

http://www.opa.org.uk/

There are quite a few other people on this forum who’ve also had experience, or been associated with this type of cancer and you can find these threads by selecting the appropriate tag to the left of this page.

I see that you joined this site in August 2008 Ellie so it might be helpful if you filled in your profile so that people will be able to help you better, although it’s not necessary to give any details if you prefer not to.

I hope this helps answer some of your questions and if you need further help I’ll try to help or point you in the right direction.
Very best wishes
Crystal

FormerMember over 15 years ago

Hi Ellie

My mother had duodenal ulcers and they decided to operate to remove part of the stomach (this was 15 years ago). When they opened her up they closed again and told us she was terminal ... she lasted 9 months and the macmillan nurses were brilliant with her. Since then cancer research has come on leaps and bounds ... I have a collegue whose grandfather has gone through radio and chemo therapy as his was inoperable, apart from sickness and loosing his hair he is still the head of the family 18 months down the line.
Jane

Hi Crystal

Nick recons that once the scars have heald he is having them tattooed with London underground stations! that is his typical dry humour coming through. The water retention has started to move from his legs since the GP increased his furocimide ... scars are healing well and his blood results were fine ... energy levels come and go but he feels he can cope with me going back to school next wednesday. As yet he has not had the acid burn but does rather well on the burping front! He is still finding it easier to sleep 'propped up' but is getting more mobile day by day. He has been very encouraged by knowing people on here are alive and kicking years down the line from surgery as he is determined to get well and stay well. Keep smiling!

Jane x

FormerMember over 15 years ago

Hello All,

Ellie when I was in hospital having chemo, there was a program on TV about Oesophageal Cancer and a top specialist in Newcastle. He had two patients one a 60 year old and one 30 year old both male. The 60 yo had an Ivor Lewis procedure and survived, the younger one, because the tumour stretched from hois gullet into his stomach was refused the operation. He was given a 1 to 2 % cahnce of a 1 year survival. with chemo. His tumour reduced to almost nothing by the time they had finished filming (a period of about 6 months) and they were ecstatic. I have tried to find it in the archives of the BBC but it may have been on ITV. It was in 2005 August when it was broadcast.

If I find it I'll let you know.

Hiya Crystal xxx

That acid burns eh ? Sorry to hear that your still having problems with dumping. I do as well, but usually on a Sunday after eating too much.

It's interesting to hear about the breathlessness as I assumed mine was due to the stomach sharing the lung cavity rather than it not being fully inflated. People seem a bit surprised when I tell them that my stomach is in my chest and the usual resort is "you can't tell from the outside" or "what's that thing there then ?" \;0)...I didn't get the ribs removed or broken but where they separated them hurts more now than it did then.

Hope all of you are bearing up, it does get better, it takes a long time and all operations hurt ! It seems to be a bit of trial and error. I was very lucky, as soon as I was on solids I was having 3 meals a day and refused the blended stuff they gave me. My first meal at home 25 days post op was a full English breakfast with toast.

Recently on a trip I was eating in a restaurant with a woman who's husband had died from cancer after having the Ivor Lewis procedure for Oesophageal cancer, sadly it had spread. We were chatting about it and I suddenly realised that she was saying how little he was able to eat and there was I tucking into a huge steak ! We are all different and I was told I wouldn't be able to eat enough to maintain 11 stone and they gave me loads of supplements. I lost half a stone in total ! Up until now they have left me alone but at my last checkup they said that I need to thonk about losing weight.

Good luck to you all
Mick

FormerMember over 15 years ago

Hi Mick

Channel 4 only human did a piece on chemotherapy ... programme was called "Bollocks to cancer" ... could this be what you were thinking of?

Jane

FormerMember over 15 years ago

Hiya Jane,

No, it was about Oesophageal cancer and I was going to watch it in hospital but chickened out ! I'm not sure if my family recorded it. They may have a copy. I'll ask.

I wondered if they would do a follow up on it.

Mick

crystalclear over 15 years ago

Hi Jane
It’s good to hear that Nick has this humour. My scars look like my old teddy bear only worse. He’ll probably find that his energy levels fluctuate a lot at first and he’ll fall asleep at the drop of a hat. It sounds like he’s doing great. Rock on Nick!

Hi Mick xx
Yes, I still have the dumping but I’m able to work around it. And if I eat less chocolate that helps a bit LOL. The acid really does burn but fortunately it doesn’t happen very often at all now. Otherwise, I feel fine but don’t have the energy I had 20 years ago for some reason. I do manage to dance and swim again though. Sounds like you’re doing well too so I’m really pleased. Also, would you mind dropping in on the thread of Netty's called Oesophageal cancer - Between a Rock and a Hard Place, as I think Netty could use a bit of our support and I mentioned you there. xx

Love to All
Crystal xx

FormerMember over 15 years ago

Hi everybody, i am going through the chemo at the moment having t3 oesphageal c,my second session starts wednesday ,and am heartened by survivers guides through this most traumatic of times.One of the symptoms which i and it seems nearly everybody gets is acid reflux ,i have been taking a teaspoon of apple cider vinigar in a half pint of water(sipping slowly over a couple of hours) and this has certainly helped me not take any other supposed antiacids ,has any other peoples tried this? also taking linwoods milled superfoods as these can be added to any foods and are easily digested-has anyone other suggestions please for extra good stuff to eat?
any superior knowledge would be most appreciated -thanx love from woody

crystalclear over 15 years ago

Hi Woody
Thanks for the tip about apple cider vinegar. I haven’t tried it myself, but I hope that anyone who suffers acid reflux regularly might give it a go. Linwoods milled superfoods are excellent. I used to use Linwoods Flaxseed with berries on cereal and I don’t know why I stopped doing that.

I’ve never mentioned this before so now seems an appropriate time. There is only one food that never, ever gives me dumping and also can stop me feeling nauseous, and I can happily eat these all day, as they taste fantastic. These are Eat Natural cereal bars, especially the one in the purple packet. They are great and easy to carry round. No other cereal bar can match this product in my opinion, (Sainsbury & Tesco).

http://www.eatnatural.co.uk/View-Products.aspx?Category=EatNaturalBars

Good luck with your next session of chemo on Wednesday Woody, how many sessions are you having?
Keep in touch to let us know how you’re doing.
Best wishes
Love Crystal xx

FormerMember over 15 years ago

Hello Crystal,

Are you sure you haven't developed a lactose and/or gluten intolerance ? Hust seems strange that specific stuff brings on dumping rather than time and quantity.

Woody, have a word with your doc about acid suppressants, e.g Ezaprasol. This will reduce your production of stomach acid before it burns your oesophagus.

Mick

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