Diagnosis and what to expect

[spanner16]

Hi. I'm 27 and female and recently (a week ago) had an endoscopy because I've been having difficulty swallowing solid food. The doctor that performed it said that he saw a growth down there and took biopsies. Since then things have gone crazy, I've had a full body CT scan and on Wednesday (two days from now) I'm meeting back up with my doctor for the results. Basically I'm terrified and I'm just wanting to know what to expect and my likelyhood of surviving this - I see there are a few people who have had the operation and seem to be ok - is this a reasonable prognosis for me? I'm generally fit, I recently took part in a two mile open water swim, I go to the gym most nights after work and also take two dance classes a week too - that's got to count for something right?

[Hidden]

Dont panic yet.It depends on staging.I had op 16 months ago and doing ok as many of us are.Have a look on Macmillan site and go into gullet cancer forum and you can read peoples profiles of diagnosis ,treatment surgery etc.Have look at mine my site name is leggy.Also O.P.A. is a valuable source of info and you may consider giving them a call.By what you have said reference age,fitness you should be ok and get through this although its a tough old ride.I was diagnosed Sep 2010 and thought that was the end but still here to tell the tale.Do you get the results from your GP or Doctors (consultants from hospital) If from hospital may take time which does worry you but they meet as a multi disiplinary team to decide the best form of treatment.When diagnosed myself I waited 3 weeks from endoscopy (was told on day of endoscopy I had OC !) then I had laporoscopy,2x ct scans,chemo November 10 for 9 weeks then surgery march 2011.I was fit,reasonably young (53) which all helps.You must stay positive too as that can help very much.Keep in touch with your progress on this site or the macmillan site

Griff

[spanner16 in reply to Hidden]

Griff thanks for that I know it depends on the staging of the cancer (which I'm still hoping isn't cancer at all - I've been told there's a tumour there but I'll get my biopsy results on Wednesday)

Like I said before I've had the endoscopy and 1 CT scan and I'm meeting at the hospital on Wednesday to find out what they've found, I'm hoping it's good news either in terms of benign tumour or an early stage cancer that can be treated. To be honest this website has been great because I'd read the statistics and thought I was a gonner but reading people's stories on here of having the op and getting through it has given me the hope I need!!

In the mean time is there anything I should be doing that you can think of? Eating certain things, exercising, drinks? Absolutely anything!!

[Hidden in reply to spanner16]

Its sounds to me it could be benign or early stage.If it was advanced you can be assured it would be very difficult to eat! Yes things to do is carry on eating well.exersise to keep yourself in good shape which you already do.Drinks? depends if your eating ok and not losing weight?Sure it will not be as bad as you think.Mine was a late stage and I was happy when they told me they would treat me aggressively due to my age and couple of young lads and they believed that curative surgery and chemo was the best as initially they only gave me 12 to 18th months to live at the outside!! How goods that?

Keep us informed

Griff.Will be thinking of you wednesday

[spanner16 in reply to Hidden]

I think I'm doing ok with regards to my eating - I can't eat solid foods but have managed pasta in sauce (eating one penne bit at a time) porridge, soups, cottage pie and smoothies - I'm trying to pack in as much nutrients in as possible and I think the minute I stopped trying to 'force' things down I stopped losing weight (I've just spent two years trying to lose over four stone through healthy eating and exercise so not focus on not losing weight was tough!!)

I drink lots of fruit juice for the sugar and vitamins and I make my own soup and today for lunch I managed half a tuna mayo wrap and soup without much trouble.

I doubt I'll get a treatment plan on wednesday will I? This will be the results of my CT scan and my biopsies so from what I've read that will just lead to more tests to stage my cancer (if that's what it is) is that right?

I have to say though - a big thank you to you because I was feeling very lost before having seen some of the statistics and thats what spurred me to go and buy the tuna wrap and soup for lunch (before I might have had a cup of tea because I quite frankly thought all was lost) after I read your biog - so I know we have never met and I've only 'known' you for less than a day but thank you already.

I'll make sure I update on my results and whatever they say

[Hidden in reply to spanner16]

Very well done then for today.Yes it may be that they may say wednesday the scan confirms and may tell you that a team gets together to discuss treatment.They may tell you more if they can be sure of what they have found without more tests.I needed help and advice when I found out and did for a long while and still do sometimes and this site and macmillan site has been a godsend.Its so nice to do some payback to new sufferers as it helped me greatly and have found many great inspirational people who have become friends.After all we are all in the same boat.

Good luck

Griff

Statistics by the way are usually 10 years old!!!! things have improved.The internet can be a scary place so get the info from us who have or had the disease.

[Hidden]

I know quite a few young women who have had similar experiences and are alive and well to tell the tale.

People do often regard this period of uncertainty before diagnosis of what actually is wrong as the worst of times. It is natural to feel worried and scared. But, if it does turn out to cancer, there are a lot of people who are successfully treated. The treatment and its success do depend on how early the cancer is diagnosed. Yes, it is a good thing to be fit because you may well need a lot of resilience to cope with the treatment.

The usual curative treatment for oesophageal cancer is chemotherapy, to shrink the tumour, and then surgery, to remove it. Chemotherapy affects people in different ways and there probably is not any way of predicting how you as an individual will be affected. Some people tolerate it very well - the tumour reduces in size better than expected without having their hair fall out or all the other stories you may hear about; and other people have much more of a rough time.

It is scary, and nobody would choose to have to go through it all, but people can and do cope with it, and there is no reason why you should not be able to do so as well.

Until you know exactly what your diagnosis is, the one thing that might be most important is to get your head round your situation. You may feel like talking to somebody who is trained in dealing with people who may have cancer. You could ring the OPA helpline on 0121 704 9860 or find out whether the hospital has links to a unit like a Maggie's Centre.

Take the opportunity to be really kind to yourself, and if you have a really good friend, talk things over with them. It is good to have somebody who might be prepared to go with you to the hospital and to listen to what the doctors are saying to you. It is very easy to miss things, and the whole process is emotional as well as medical. Sometimes it is good to write down the questions beforehand. You will find specialist nurses very helpful.

We give you our very best wishes for your next session with the doctors.

[lizthebob in reply to Hidden]

Hiya,

Just to say I'm thinking of you and know what you are going through. I was diagnosed two years ago. They found a small tumour but staged it at a 3 becuase it had gone a bit deeper than expected. I had chemo which I unfortunately had a very severe and rare side effect from and ended up in ITU for 6 weeks and hospital for 6 months. HOWEVER, it did its job coz when they operated the tumour was barely palpable and had no cancer cells left in it at pathology and no nodes were involved.

So although it was not an easy time, I have come through, having thought I was a definite gonner. It amzes me every day how the body adapts with half a stomach and half an oesophagus. Let's just say, now I am better I am still on a diet!!

I am a relatiuvely young(41) woman and never smoked or drunk.

As others have said be careful with statistics. I think with my situation I had a very little percent chance of making two years and hear I am fit and healthy and back at work.

And yes, despite being so desperately ill after chemo, I think the hardest bit was all the tests and scans at the beginning. Once I knew what I was dealiung with it was somehow easier.

Take care and take heart.

[spanner16 in reply to lizthebob]

Thanks for that - I'm beginning to understand that this is probably going to be one of the hardest things I'm going to go through but whereas before with the statistics available to me I honestly thought there was no hope for me so why bother, reading all these stories gives me a flicker of hope and a reason to fight. I'll make sure to update on what I hear on Wednesday and throughout this journey of mine.

[medway]

I cannot really add anything to the comments above other than to say, the fitter you are, the better you will be IF you have surgery

[Kiks]

Hi

If you are unlucky and it turns out not to be benign then just remember It isn't a death sentence, especially at your age and level of fitness.

I had the op 10 tears ago at the age of 48, no chemo but had radiotherapy after the oesophagectomy. Yes it was tough at times but I am leading a pretty normal life now and very happy and in many ways I appreciate things so much more now.

I know of many people who have had the op and are now living good lives, so please don't despair if the news isn't good. Remember you are not alone and any worries you have then please ask because people on this site will have probably experienced the same and might be able to help.

Good luck

love

Krysia

[Bernadette]

Be sure to let us know how you get on, of course not all tumours are cancer..good luck, we will be thinking of you.

[spanner16]

Update - Its been confirmed that I have cancer and I have been for a PET scan to help determine the stage of the cancer however from initial scans it seems that the cancer hasn't spread to other organs or my lymph nodes and at the moment isn't showing on the outside wall of my gullet so I'm very hopeful that a course of chemotherapy and an operation will sort this - after all I have to be positive, it's all I can do at the moment!!

[rayw55 in reply to spanner16]

Hi, Sounds like you are going to join us - a band of 'lucky B's' starnge to say but we really are the lucky ones whi have been found early before this nasty disease gets its hooks into every nook and cranny. As has been said so many times, the road is a long one but it isnt a farm track- its a motorway that so many have journeyed on before. My advice (for what it is worth) is stay focused, set yourself little goals and vow that this little B will not get you! .

I had my IL operation 8 years ago almost (2 Dec 99) and have returned to work, led a great full life with a few adaptations, the best investment I personally made was a reclining chair before my operation, this allowed me to stay comfortable when i got out of hospital and indeed was where i slept for a couple of weeks, this is a long distance run and not a sprint so do not let minor things get you down- remember LIFE IS GOOD!

all the best RAy

[Mick]

Hi, as you can see from all the replies there are plenty of us out there that have gone through a similar situation. I was diagnosed on 20th Dec 2011 ( early stages, T1 and was very small and had not gone through the wall or affected the lymph nodes) I was operated on 1st Feb 2012.

Yes I`ve had a few ups and down, its easy to say but try not ot panic and think the worse, stay positive and take each day as it comes.

7 months after my op, I have just come back from a 7 day cruise, I did have good days and off days but only for a few hours at a time. I think that was due to different eating habits while away, and the amount I ate, these are the problems I am learning to live with.

Take each day as it comes and stay positive, best wishes.