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 13 years ago in reply to crystalclear

Good morning all

I have been to the oncologist yesterday and my surgeon. They have come to the conclusion that its a fluid build up or a large blood clot. So they will be operating to remove it on Monday. Its a simple procedure that i will have a general for and be home the same night, but I am very relieved that after the scan and all the poking and proding its only that. PHEW!

crystalclear over 13 years ago in reply to FormerMember

Hi Chandigunda

This is such good news and I can imagine it’s a huge relief to you. We all empathised with you because each and every little problem has us wondering and worrying what it could be, so this outcome is really good! In fact’ I’ll do a little dance.

Good luck on Monday and let me know how you get on after the op.

Love

Crystal xx

FormerMember over 13 years ago in reply to crystalclear

Hi all, Dad is in the operating theatre as we speak....he's undergoing a laparotomy to see whether the cancer has gone into his stomach.

I've haven't slept and I'm very, very tired....so I apologise in advance....here we go....

I didn't know that the procedure would be done under general anasthetic (because I'm a donkey) so Mom is on her own in the hospital. I feel vile because I didn't ask for time off work to go with her.

She was told the procedure would be 45 minutes. He's so far been in there 3 hours. So, I'm sitting here worrying myself to death about what they are doing / finding. I can't get to Mom and I'm looking on the internet (which I said I would never do again!).

Grr. It's one step forward and another two back all of the time.

We were also told Dad would be allowed home within an hour.....again.....not sure how 'right' this was or whether we will be visiting him tonight.

Sorry to not be all positive, I'm just incredibly tired at the moment. Hopefully, Dad will be home later on and all will be well.

He's being referred to an oncologist next week so we are keeping everything crossed that he can start some sort of treatment.

Sorry, I know I'm worrying without knowing the full facts but I just feel a bit lost at the moment. God!! If this is the beginning of the journey, I'll be completely grey in a few weeks time!

On a plus side, Dad is still taking it all in his stride and was painting the living room ceiling yesterday - he's pretty amazing!

Love to you all but I can't send you any 'thoughts' as I've got no room in my head today!! xxxxx

FormerMember over 13 years ago in reply to FormerMember

Sarah

Don't feel bad, the laparotomy is a vital part of the staging process, I was very saw afterwards but still went home the same day, I have known others stay over night, it all depends on how you feel afterwards.

Stop beating yourself up and keep off those damn medical sites!

Steve x

FormerMember over 13 years ago in reply to FormerMember

Hi Sarah,

My Dad is in the same situation as yours and hopefully I can put your mind at ease a bit. My Dad had a laparotomy about three weeks ago. Basically they make incisions in his abdomen and insert a camera to have a good look around and see if the cancer has spread any further than just the gullet. The op is quite intricate as they have to work round the stomach and bowel without causing any damage to any organs. I wouldn’t worry about the length of time he has been in the operating theatre as we were told they will take as long as needed to make sure they cover all angles.

The recovery process takes a few hours. My Dad had his op at 4pm returned back to his room at 6pm and left hospital at about 9pm. They have to make sure he is fit and able to leave and the wounds are not bleeding and various other safety checks, which unfortunatley all take time.

The surgeon may tell you the outcome of the op the same day or it will be referred to a later appointment. The Oncologist will run through what treatment you father is going to have and for how long etc... Treatment normally starts a short while after that consultation. My father had his consultation with the Oncologist last week and starts Chemo on Monday.

It‘s good to hear that your Dad is taking it in his stride. The side effects before and during Chemo can be very diverse. Unfortunately you, like myself and family are in for a rather long Rollercoaster ride over the next few months. But I would highly recommend getting in touch with your local Macmillan unit, probably at the hospital your Dad is at, they are amazing people and will bend over backwards to help and most importantly listen to you. You need to be at your strongest for your Dad as he is going to need your support once treatment starts.

I wish you all the best and please keep in touch as we are both kind of at the same point in the treatment process and we can hopefully help each other out with help and advice.

All the best and take care.

Andy. xx

FormerMember over 13 years ago in reply to FormerMember

Hello,

I haven't been on this site for a while but thought I'd give an update on how we have coped since diagnosis, particularly for the newly diagnosed so forgive me if I'm in the wrong place.

Arthur seemed fit and well but in dec. 2010 had an internal bleed and was diagnosed with a 'massive' tumour in the gullet. Surgery was not an option- he's 87 and has AF( irregular heartbeat) a hiatus hernia ant the wretched tumour is perilously close to his aorta. We were told to expect pain and trouble swallowing and that he could expect months rather than years. Chemo would only be given if he experienced pain.

Well -and this is the good bit- 18 months on we've had no pain no trouble swallowing. Arthur has led a fairly normal life ( for such an old chap!) and is only now beginning to feel excessively weak and tired, not much appetite but no weight loss.

We have support and regular examinations from the local mediacal team but otherwise it's pretty much--carry on. He has medication to inhibit stomach bleeds and a daily injection ( administered by me-I don't feel a thing!)

I just thought I'd share this with anyone who's feeling apprehensive.

Oh, and we've just celebrated our Diamond Wedding Anniversary which in the beginning thought we never would.

FormerMember over 13 years ago in reply to FormerMember

To Andy & Steve - thank you so much for your kind replies.

Dad is now home! The procedure took 3 hours. He's very sore and Mom had to drive them home (which is probably more scary than the laparotomy).

Progress update - Dad is 'green'. Again, better than when he went totally jaundiced - orange is SO not a good look! and is wobbling around due to the anasthetic.

He's hoofed it around to my Nan's house to get a shopping list (Dad does Nan's shopping on a Thursday), so he's not exaclty 'resting'. I said I'll drive over and do the shopping....honestly, trying to keep him down is a full time job.

Thank you so much again - I'm a born worrier and that and a lack of sleep, well, I was nearly hallucinating with the stress this morning.

I've made a decision - no more internet sites - only the Macmillan site. It's the only place to get helpful, positive information.

Thanks to all of you. Steve, I read your blog and you are quite a man!!

I am so grateful to you all. If I post a 'worry' again, please feel free to tell me to shut up!

You are all brilliant xxxxx

crystalclear over 13 years ago in reply to FormerMember

Hi Andy

It’s good for your dad that the waiting is almost over and he can start treatment very soon. It’s unclear from what you write what the results of his tests were and whether or not he’s been offered surgery. Anyway, I wish you and your dad all the very best and hope that the chemo does its job well by reducing the tumour and bringing it under control.

Let us know how he gets on.

Love

Crystal xx

crystalclear over 13 years ago in reply to crystalclear

Hi Jaydee

Many congratulations on your Diamond wedding anniversary and I hope that you and your husband may share a few more years yet. At the rate he’s doing this could be a distinct possibility. Keep sticking those needles in, they are doing him good obviously, and like you say – they don’t hurt you!

Thanks for posting here because it’s experiences such as yours that are so uplifting to hear and encouraging for everyone.

I send you both very best wishes and hope that Arthur continues to do well for a long time yet.

Love

Crystal xx

crystalclear over 13 years ago in reply to crystalclear

Hi Sarah

I’m glad to hear that the laproscopy went well and that your dad is up and about running errands so soon Lol. You’re right, there is no keeping him down! Remind him to rest up later though, just to get some sleep or something. If his shoulders start to ache slightly, this is a peculiar side effect of this op, which arises from the air that they pump in to the body cavity when they insert the tiny camera. Any discomfort though doesn’t last long.

Now it’s more waiting for results, but fingers crossed that all is good.

Love

Crystal xx

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