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

crystalclear over 15 years ago

Hi Rumbler
I empathise with you about impatience. I too was very active before surgery, enjoying hiking, swimming, dancing, and travelling, as well as more academic persuits. Happily, I’m just about able to do most of these things again, albeit with less staying power as I get tired more easily. With your fitness levels and good recovery rate you’ll be shipshape in no time at all. In the meantime, enjoy the sleeping as it’s a good part of the recovery process.
Rib aching is par for the course I’m afraid, as at least one rib is cut during surgery, although I believe in Mick’s case his ribs were stretched apart. Also, your back will ache quite badly because the major muscles have had a bit of trauma. As for the physio, I take my hat off to you for doing that so soon after surgery, so I hope it won’t be too painful for you. I could never have managed anything like that so soon. I’d be interested to hear how you get on with that because it’ll be a first. Are you able to eat ok, with no problems?

One of these days you’ll have to tell us what you do when you’re making hay Lol.
Take care.
Love Crystal xx

Hi Netty
Welcome to this thread and I hope you find lots of support here.
It’s natural before such surgery to feel overwhelmed and not knowing what to do first. Just take a deep breath and then do some light exercise, which will not only make you feel loads better by calming nerves, but will help your body to get fit. It’s never too late to start the exercises as even three weeks worth will be very beneficial to you. Try to ensure that it’s an aerobic type of exercise which concentrates on the breathing. The chemo has probably left you feeling weak so don't overdo it, but as days go by the exercise will make you feel stronger. As well as brisk walking and lifting light weights, I used to tread up and down on the stairs, just two steps. (step exercise). You’ll be surprised how good you start to feel if you keep this up every day and increase your time by a few minutes each day.
We’re all behind you, so any time you need help, want to chat or ask questions, we’ll be around to help you.
Love Crystal xx

Lynnal
Hi ((((hugs to you both)))). How great to hear from you again. I’ve often thought about you so I’m really pleased that you’ve dropped by.
Yes, as you say there are some good bits after the surgery, and I’m glad to hear that you’re doing well.
Take good care of Lynn. I’ll send you a message later.
Love Crystal xx

FormerMember over 15 years ago

Hi Chrystal,
thanks for the info.
Went to physio yesterday and neither the undergraduate nor the tutor (our public hospital is also a teaching/university hospital) had ever seen or heard of an Ivor Lewis procedure and after a good looksee at my scars they are off looking at the internet! This could be interesting for all of us.
From discussions with them to date my aches and pains maybe a result of me trying to do too much too soon. I have asked them to look at exercises that will help the muscles without overworking them - will keep you advised.
Yes I do have a few eating problems, my throat /oesophagus just seems to close up after just a couple of well chewed mouthfuls and I just gag and end up vomiting. Sometimes I get the hiccups as well and sometimes I can resume eating after the vomiting but not always.No rhyme nor reason as to the type of food it can happen with anything! Most annoying when you have decided to have a meal at a nice restaurant. Our oncologist thought it may be due to a flap at where the join has been made. waiting for appointment with the surgeon and will ask him as well about it.

I had a chest xray yesterday to check on a persistent cough (which does nothing for the ribs)
Sounds like I am a moaning minnie doesn't it? My main concern is not being able to put weight back on but I am getting around pretty well and life is great!!
Time to make more (of my secret recipe) hay.
Cheers. Ben

FormerMember over 15 years ago

Hi Netty,
Just read your entry and Crystal's reply and it dawned on me that my comments might be putting you off!
As I said life is good and I get around very well.
The op itself is already a vague memory and compared to the alternative it really was a doddle!
It obviously helps if you are fit and active which it sounds like you are.
All the best with your treatment.
Thinking of you from down under.
Cheers Ben.

FormerMember over 15 years ago

Hello All
Just wanted to let you know how it went with my visit to the surgeon yesterday. I was in with him for quite a time while he explained the procedure in detail and outlined the various risks involved with the Ivor Lewis. He was very direct and very honest. That said, he was also very positive and encouraging too. He has put the op back a week as he thinks three weeks is not enough time to get over the chemo, so I have a new date - 25th March - another week to do some more exercise and get my stamina up. I am still pretty much bowled over by what he said about the risks though. I know all surgery carries some degree of risk, but Ivor Lewis sounds like a real bogey man! Someone told me that oesophagectomy can be done by keyhole surgery - apparently recovery time is much quicker - does anyone know anything about that?

HI Crystal
Sorry for sending such a moany message - I'm sure I'll have my brave hat back on before too long!
Netty x

Hi Rumbler
Please don't worry - your comments dont put me off at all, You come across as very positive and determined.
Netty x

FormerMember over 15 years ago

Hi Netty and all,
I am due to have the op as well, though i don't have a firm date but approx 8 weeks away. My surgeon wants 6 to 8 weeks after my last Chemo cycle.
I personally am terrified at the thoght of this op, (even though i have had major surgery before).
My surgeon said when we discussing the treatment cycle etc. that "You need to put weight back on and regain your fitness level to survive the operation".
Now i did ask for the truth but with hindsight it was just bravado on my part.
Please keep in touch as It may be that for me the more I know the easier it will be to cope with.
Sorry if that sounds selfish
Allen

crystalclear over 15 years ago

Hi Netty & Allen
My first instinctive response to you both is to breath a big sigh of relief for you, because you can go ahead and have the surgery, and it tells me that you’re fit enough and that there is no spread. I think all this is good news. My second response to you is to give you a great big hug each, because I know what you heard about this surgery terrified you. ((((((Netty))))) & (((((Allen))))). Please try not to worry too much!! The surgeon has to tell you all the risks or he wouldn’t be doing his job properly and he needs you to be aware of them. To my mind, the benefits speak for themselves though. Just remember this, the doctors that perform this surgery are The Most Qualified in the land. They are highly skilled professionals second to none. The anaesthetist will be the highest trained especially for this type of surgery, so you’ll have a team of experts around you at all times. This is very reassuring isn’t it?

With regard to keyhole surgery, I know of two people who had this procedure, both successfully, as was the case with all the Ivor Lewis procedures as well. I believe that only certain health trusts perform keyhole surgery on account of surgeons being trained for it. From the people I’ve spoken to, the operation still took many hours with similar risks, but initial recovery was quicker. Other than that, the various side effects were all very similar to those of the conventional surgery. More than that, I don’t know enough about it to offer further comments. You would need to find a surgeon that performs the keyhole technique and have your consultant refer you to him. It would be best to speak to your Mac nurse about this.

I think you’re each very brave even if you don’t feel you are. Carry on with the weight gain or loss as the case may be, do wonderful things and soon you’ll be
just like all the rest of us moaning about the cost of living LOL.

I'll be here for you.
Love Crystal xx

crystalclear over 15 years ago

Hi Ben
Well, I’m so surprised that the physio people in a training hospital had never heard of an Ivor Lewis! Is that where you had the surgery? I just hope your surgeon had heard of one, Rofl. Mind you, it does sound like something to do with boxing or baseball doesn’t it? I’m thinking that it’s probably as well that you’re not doing the physio yet as it might be too soon for the scar tissue and the underlying muscle. Best to get advice from your doc first. We don’t want you coming unzipped!

Regarding the eating problems. I too, and several others I can think of, had this problem of the oesophagus seeming to close up and even food sticking again. That’s why I asked you if you had any probs because most people do. It’s usually just down to the healing process and the scar tissue being swollen and thickening in the healing. It gets a lot easier later on. Anyhow, it’s good that you’re having the surgeon check it out.

Also, I had the coughing fits and again it’s quite normal. I think it’s to do with having a lung deflated and then its subsequent recovery which leaves you with a husky cough. I hope your xrays are good and show the lung fully inflated again. Just eat what you can when you can, and on a good day just do it more. It will take time though before you’ll see weight gain.

You’re not a moaning minnie at all and nobody would think that. All these side-effects are new and unique to everyone, often causing concern, so it’s natural to want to find out what others have experienced

You just make sure you’re having lots of fun making 'secret recipe' hay LOL. This will drive me crazy now wondering what it is you do. Anyhow, whatever it is I hope it’s healthy, happy and hilarious LOL.
Let us know how you get on.
Love Crystal xx

FormerMember over 15 years ago

Thanks Crystal, your feedback is very helpful for an impatient young fella like me.
Not so surprising that Ivor Lewis is not known here when you take into account that we only have a total population in NZ of 4m there are not a lot of cases every year (about 280 according to our surgeon - who fortunately has carried out more than 20 and is reputedly one of the best in the deep south!) To give you some idea , my daughter's GP when told I had EC was most surprised to hear about an Ivor Lewis procedure and told her he thought EC was an automatic death sentence!!!! She soon straightened him out!

Have taken on board your advice about being careful with the physio and will keep you informed. Have had a bad day today in the lotto eating stakes with being unable to get anything down or to stay down no matter what I try. Talk about hungry! Ah well tomorrow is another day in hay-making paradise --- speaking of which it's time to make more.
Cheers.

crystalclear over 15 years ago

Hi Ben
How are you feeling today? I was concerned when you said that you couldn’t get anything down or to stay down and if this is still the case today you should see your doctor. As I mentioned before, sometimes during recovery the scar tissue thickens and so food can stick or become painful. However, if you find you’re not able to eat at all, you’ll become dehydrated and malnourished. I’m sure it’s nothing serious but will need checking out. It’s around three months since your surgery isn’t it? So it must be time for the three-monthly check-up with your consultant. I hope all is well otherwise, just get this checked out and then we’ll breathe a sigh of relief and you can go off and make some nice hay Lol.
Let us know how you get on.
Love Crystal xx

FormerMember over 15 years ago

Hi Crystal,
Thanks for your response which was spot on!!
I woke up the morning after my last posting and still couldn't swallow and had lost 1.5kg so phoned my Dr. and he got me into A&E (which was the quickest way to get me in for a Gastrsoscopy.
4 hrs later I had the look see -- I choose to stay awake as I am a nosey sod -- and there it was -- a constriction which looked like a large ö"ring inside my oesophagus made up of scar tissue. Booked in for 12.10 friday to have it ""reamed"out but he wont let me

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