Diagnosed and devastated

Hi I was diagnosed in Feb have had chemotherapy and radiotherapy luckily no bad effects after treatment felt great could eat anything also put on weight had surgery on 25/7 spent 9days in hospital after 10 more days had stables removed surgeon came in to c me and after all biopsys done during operation was now 100% cancer free just recovering. now from op c surgeon next week am now looking to book holiday for Oct good luck for the future hope everything goes as smoothly for 

John

Thanks John - May I ask where you were treated and what your diagnosis was?  Regardless, it is good to hear your story and especially that you're 100% cancer free. Wish you lots of luck in your recovery and thank you so much for your message.  

Hi Hani I had stage 3 oesophagus cancer with a 4 cm tumour luckily it had not spread or broke through the wall seen by the scans I was treated at Aintree hospital Liverpool who were brilliant don't read the internet for mortality rates I done all that it doesn't give u any hope my nurse at anitree told me only read NHS website all the best for the future

John

The standard chemotherapy regime used to be ECX 

• epirubicin (also called Pharmorubicin)
• cisplatin
• capecitabine (also called Xeloda)

but it now there is a move to FLOT which has been found to have better outcomes but is more aggressive with more side effects.

All chemo is poison, but the dose is adjusted so that it doesn’t actually kill the patient, just the tumour. 

I had ECX preoperatively, which I tolerated quite well. Actually Cisplatin is quite ototoxic (can cause hearing loss) and as I am severely deaf this was switched to Carboplatin, a very similar drug of the same class of drugs. It didn’t affect my hearing at all.

The good news is it did shrink the tumour, the not so good news was that I didn’t tolerate the post op chemo at all and it had to be stopped after three days! However over five years later I am doing well with no sign of recurrence.

I was lucky that my cancer was found early enough for mr to have surgery. Someone I know was diagnosed about the same time as me but couldn’t have surgery. I still see him at the occasional dance and he is doing well; his mets have disappeared and he is enjoying a good quality of life - five years on. He is such a positive person, with a a wicked sense of humour and great fun.

So yes it is devastating but it is not the death sentence that many people think it is. Don’t worry about statistics, they are out of date and cannot be applied to an individual. With a positive attitude, especially as your husband is feeling well, you have to believe you can beat this together - as a team. I can see that you haven’t given up and you are very much on his side, so you have every chance of a continued good life together. Do remember that there is still a life to be enjoyed so make the most of every day!

Hello Yani

Sorry to hear of your hubbys diagnosis

I was T3N2M0 pre op Chemo and then T2N1M0 pre op - like Brent I had ECX for 9 weeks Pre though could only manage 8 weeks post as it's a tad more difficult - well I found it that way.

Here's a link to my Blog that's just been updated by my daughter . It's an A-Z that hopefully could help you and others out as you navigate your journey .

myoesophagealcancerjourney.wordpress.com/

Very Best Wishes

Ask anything anytime - you have a great bunch of people here only to willing to help 

Peter 

Dear  Yani10, 

So sorry to hear about your husband. What other organs has his cancer metastasised to?

Your husband should be a candidate for clinical trials. You should ask your oncologist about this. Some of these can be successful in curing cancer and I think that there has been some success with Car-T cell therapy in treating Oesophageal cancer?

Thank you all so much for your replies, I really appreciate it.  

John - am definitely keeping the hope - hope you have a fab holiday

Brett - Really appreciate the info, and thank you for your support.  Especially pleased to know about your friend 5 years on - long may it continue.  

Peter - love your blog, lots of info there and might get the book you recommend! Very well done putting it together with your daughter.

Anon - we were told there is a lesion on the lung, and it has possibly also spread to the liver (there was no need to do an mri we were told as this doesn't change things). 

As an update to all, he was tested HER2 positive (which I think means that the tumor grows/spreads faster) so the chemo now will be HCX... starting in a couple of days.  Whilst this whole thing has been such huge blow and such a hard time, we are trying to stay positive.  For the moment have been trying to increase his weight ahead of chemo, so far working well.  Taking it all one day at a time, scared but strong

Sending love and positivity to all