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 16 years ago

Hi Mick

Thanks for your response, yes I too am not exactly suprised but am alarmed and confused as to him strill having Barretts, his consultant is Dmitrewski at Russells Hall and we are seeing him on 28th of this month for the post op consultation and I have questions I want answering, as I explained to the oncologist tuesday by taking lanzaprazole this will mask any symptons, I am quite confused to be honest, it sounds as though not enough of the oesphogus was removed as the consultant said prior to the operation that it would clear the barretts. We are going to the OPA meeting the end of the month in Brum so I hope i can get answers there also. I keep telling myself that the 21 lymph nodes removed were not cancerous so be positive but am so scared of the damage barretts can do but am determined to get the answers and best care for him. Hope you are alright and feeling good, speak to you soon, take care
Love Sal
xx

FormerMember over 16 years ago

P.S just noticed the time you posted.........do you sleep? lol xx

crystalclear over 16 years ago

Hi to Everybody

Sally, what great news that there was no spread to the lymph glands, but I’m sorry to hear that you are depressed. Probably, with everything that’s happened and with roller coaster emotions, you’re now in the dip, and tiredness and depression are taking the place of being highly tensed up and rushing around. I hope it soon passes and that you’ll be feeling more like your usual self. Like Mick, I too am so surprised that John still has Barretts as I thought this wouldn’t be possible after the op. I’m sure you’ll be discussing this with the consultant on the 28^th. Anyway, John sounds as though he’s doing really well and I shouldn’t worry too much about the niggling cough. I too had one that lasted for a few weeks, possibly caused by the scar tissue healing. Take care of yourself Sally, big hugs to you both. xx

Michael, I’ve been thinking a lot about you and Frank lately and would love to hear from you soon, as people in our situation get a bit jumpy if we don’t hear from our fellow troopers Lol. I hope that Frank’s recovery continues to go well and I also hope that he managed to get over the depression he was feeling. You’re a fantastic support for him and I’m sure he appreciates all that you do for him. Just remember to have time for yourself too. xx

Mick - I hope you're very well and feeling good, as you are our inspiration. xx

Love Crystal xx

FormerMember over 16 years ago

I'm ok Crystal. Thanks, hope you are.

Sal, don't worry about the Lansaprezole it reduces the amount of acid the stomach makes so is ok. It's stuff like Gaviscon that just neutralises the acid AFTER it has done the damage that is not good long term.

There is another procedure for Oesophageal cancer that they do if the lesion is higher up, there was a post here a while ago that mentioned it. I that case it may be that they didn't resection the stomach so he could still have Barretts. Severe Barretts is High Grade Dysplacia and that is what I had, but it was not cancerous. There was a separate lesion as well. So I had a BOGOF done the Barretts and Tumor in one.

Has John got scars on his abdomen, around belly button level ? If not then he probably had the other procedure, not Ivor Lewis. I'll try and find the post.

Fingers crossed
Mick

FormerMember over 16 years ago

Thank you for posting this Crystal,

My mom is 57, and we're just in the early stages of finding more about her oesophageal cancer. She has been told that it's caught early, and that it's small, but we went to see a thorasic surgeon today and he mentioned removing the entire oesophagus! From what I have read on the Internet, I thought they only removed the cancerous part....so confused right now. These specialists are appearing from out of nowhere and they pretty much say different things. She's getting a PET scan soon and yet another endoscopy. It's been 3 months since she's been diagnosed and we just want things to start moving along.

I really appreciate your post because it give me more hope. It is such a relief to hear - you're right there is a lot of negative reports out there. Take care, I look forward to reading more of your posts.

Rooibus

crystalclear over 16 years ago

Hi Rooibus

Thank you Rooibus for your comments and you are welcome here, although I realise that this is the last place you would rather be. However, you will find people here who have been, or are going through similar, so I hope this will be of some support to you.

It's very good that the tumour appears to have been caught early and I'm sure that once all the tests are finished a treatment plan will be started very soon. I can't really comment on the surgeon stating that the entire oesophagus will be removed but I would suggest you clarify the matter with him. Your mum should have been assigned an Upper GI nurse so you might raise this point with her also.

The internet can be a scary place so I suggest that as well as this site, you look at the following links to sites which provide reliable info and good support:

Oesophageal Patients Association
http://www.opa.org.uk/

Cancer Backup (oesophageal cancer page)
http://www.cancerbackup.org.uk/Cancertype/Gulletoesophagus

Has your mum started chemo yet as you haven't mentioned it?

I do hope everything goes well for you and your mum and please let us know how she's doing and when her treatment starts.

Love and best wishes - Crystal xx

FormerMember over 15 years ago

Hi everyone

I have not been around for a while as there has been so much going on. We went to see the consultant surgeon last friday who informed us John DOES NOT have barretts anymore and the biopsy report showed there was no further trace of cancer so you can imagine our feelings after the oncologist told us differently and yes we have seen the report now so in future we are insisting on seeing our own oncologist and not his understudy as we have done so many times before. John will still have endoscopies as he is at high risk of contracting barretts again and will be seen again in 3 months time. We have had so many emotions going on in our heads but can hopefully move on now. We went to an OPA meeting on Saturday and that was really beneficial and everyone there was lovely. Anyhow, hope you are all doing well and looking forward to xmas it seems to come along quicker each year. Has anyone heard how Frank is doing? Crystal, Mick hope you are both well, John is doing well recovering steadily although still has this irritating cough which we have been told is normal and is now off the pain killers which is great. Well short and sweet but loads to do but will pop back in soon, take care
Love always
Sal xxx

FormerMember over 15 years ago

Hi i am new to this even tho my husband had oesogherial cancer 5 yrs ago. He has recovered but it has left him with severe stomach pain,which is worse after eating. he has only just had a blood test for B 12 deficiency which we are waiting for results. He has a constant battle with keeping his weight up. we go for a yearly hospital visit but they don`t do any tests, just weigh him and ask a few questions, he always tells them of the pain he is in but they don`t do anything. I would be grateful if anyone has any experiances they can share.

FormerMember over 15 years ago

Hi Annie
I'm sorry I can't answer your question but I think it's great that your husband is still doing OK 5 years on - did he have surgery? I'm sure someone will post soon who knows more - my husband is still having treatment for his OC.
Best wishes to you both.
Judy xx

FormerMember over 15 years ago

Hello Annie, I'm 39 months post op but don't have any problems maintaining weight - exactly the opposite. I was told that I wouldn't be able to eat enough to survive without supplements which proved far from the actuality. I eat and drink as I did before the op and my stomach was reduced by 1/3 rd. I don't have stomach pains either, but do have soreness and tenderness from the scar tissue. I suffer 'Dumping Syndrome' now and again but in general it isn't a problem.

Your husbands check-ups sound similar to mine, weight, chat and a quick feel around the stomach. Which hospital is he at ? I'm at the University Hospital Queen Elizabeth Birmingham.

I know there are others on this site who are post op and suffering similar effects to your husband. Hopefully they will respond with some advice. I was diagnosed with V B12 deficiency in August last year and was told that the body stores up to 4 or 5 years worth so it can be a while before it becomes apparent. I have to go back at the end of February for my next one.

I hope that helps.

SALLY.................great news.
Mick

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