Have not been on for a while, but I can now say after surgery and post surgery chemo, I am a survivor. The oncologist is happy all scans since chemo stopped have been clear. Still involved in Rugby League refereeing. Although 15 months since surgery still getting stretch but I eat every thing now in small doses. Lost 40 kilos after surgery, now starting to put it on again. Doing a lot of work in the garden.

Great to hear you are doing well.. i was wondering how you were were doing... you lost 40 kilos? thats alot! So gald you are a survivor, take care

Hi, not been on here for a while but need some more help, advice, support really. Dad was diagnosed with Cancer of the Oesophagus in June. He has had all the tests done and received results. The tumour is about 6cm long and two thirds of the way down his gullet. They have also found a small amount of cancer behind his aorta, which seems to have put a spanner in the works, so I think anyway.

He will be receiving daily medication and then once a month will have a day visit to Maidstone Hospital for intravenous treatment. What concerns me the most is the percentages we have been given for the success of treatment and operating afterwards. The original plan was for three months Chemo and after that time if the tumour has shrunk enough they will operate to remove. Then further treatment after as required.

But, since finding the additional cancer behind the aorta we have been told that if the Chemo doesn’t remove this extra cancer they will not operate to remove the tumour. But what is more confusing is that they have also said that even if the treatment is successful there is only a 25% chance of operating anyway. If they don’t operate the survival rate is only 10%. The overall success rate of the treatment is 50%.

Can anybody shed any light on this? I know each persons treatment is specific to them but was hoping someone might be able to advise on this.

hi andy,

     this seems to be the general diagnosis of this condition. I was told exactly the same thing, no operation offered due to spread, 4 cycles of chemo to reduce the tumor then more staging tests, with only a less than 10% chance of operation after that.

     Also don't look to the statics my friend it will depress you more, you need to wait for the results after chemo. If he is offered an operation and post op chemo all the better,but everyone handles it differently.

     I know this isn't much help but i think we're all in the same boat with O C, best wishes to your dad and all your family, checkout the blogs on the oc part of mac world and you will see people who have been through this and come out the other side.

  best wishes joe.

(((Lou)))

How great to hear from you.  You’ve been in my thoughts from time to time and I just knew you were doing well!  You certainly lost a lot of weight but I imagine that with the rugby refereeing you’re building up muscle and more importantly, getting those lungs back into normal function again.  Just don’t overdo things too much as it’s so easy to get tired very quickly, like suddenly running into a brick wall.  One day, those stretches will probably be unnecessary, the main thing right now is to eat well, little and often, as you said.

All the very best to you and keep doing what you’re doing as it all sounds good.

Love

Crystal xx

Hi Andy

I remember replying to you a few weeks ago when you were waiting for results, so I’m really sorry to hear that another tumour has been discovered near the aorta.  Whilst this must have come as a bad shock to you all, because I know the hope is always that there has been no spread, it doesn’t mean it isn’t treatable all of a sudden.  As for statistics, I personally take no notice of them for various reasons:

We are all individual and our responses to treatment vary, so it’s my belief that we have a chance that the statistics just don’t show.  The stats are based upon large numbers of people of different ages and variable health status so aren’t consistent in my view.

Stats are demoralising and can diminish focus.

Stats are based upon figures taken from research a few years ago and since then, treatments improve all the time.

I realise of course that the doctors are highly skilled and well informed, but if they start delivering stats to their patients I don’t feel this serves any useful purpose.   In your dad’s case hopefully, the chemo will do its job and shrink the tumours enough for surgery.  If that isn’t possible, then other treatments can control the cancer for a long time, and there are people on the Mac site who are proof of this.

I really recommend that you or your dad give the Oesophageal Patients Association (OPA) a call.  This organisation has expert information on everything associated with this cancer, and they are also very sympathetic and supportive and will be able to advise the best course of action.  And remember too, that if you are not happy with the diagnosis, treatment or prognosis, then your dad is entitled to another opinion and this could be discussed with the OPA.

Good luck and I’ll keep fingers crossed that all goes very well for your dad.

Love

Crystal xx

Hi Joe

Welcome, although I’m really sorry to learn that you were told that surgery wasn’t viable.  Having read your profile it seems that you would have been an ideal candidate for surgery, so I hope that this might yet become a possibility.  I’ve also just noticed on your Home Page that you’ve posted some blogs, which I haven’t noticed before as it’s a page I don't visit often, so I’ll catch up there., and having just read your poem, it’s absolutely beautiful.

Good luck with your treatment and I hope it all goes really well for you.

Love

Crystal xx

Thank you Crystal for your kind reply, all still going well.  Can't believe how far he has come in less than a year.  Early diagnosis was lucky and certainly helped.  We attended recent meeting of Cancer Support group at DRI, was ok, may go again.

Hols start Sat - can't wait.

Hope to catch u again, be nice for u and hub to swap tales and glad you going on ok too.

Lots of love all on here and especially to you Crystal for all the support and kind words.

xxxxxxxxxxxx

Hi Maiseibird

Yes, you’ve come a long way, it’s such a long journey yet time moves swiftly somehow and then we look back and are amazed at how far we’ve come and what has been achieved.  Early diagnosis is imperative, but unfortunately it seems to rely on a certain amount of luck, as symptoms don’t often appear early on.  I was lucky because I just happened to have steak twice close together and after swallowing, each piece just popped right back out again.  That was so bizarre that I went to the docs right away.  Not everyone unfortunately, is that lucky.

Anyway, onto much nicer things.  Have a lovely relaxing holiday and a very special day renewing your vows.  I wish you both an enduring marriage in a long and happy life together.

Hope to meet up when you get back.

Love

Crystal xx

Love and Best wishes to All looking in.  Hoping your day is a good one. xx

Thanks again crystal, we will I am sure have a great time.  Husband is glad to be here to be able to do fun stuff.  

His diagnosis was purely by accident whilst being investigated for other things, no symptoms of OC at all.  

We feel he is one of the lucky ones and are so greatful fot it.

Love to you and everyine else on here.

Back in couple weeks xxx