Hi , I’ve just been diagnosed with stage 4 cancer if gullet , my first app is Wednesday, I’m so scared , dt know much more really , I know I cart have op but need too start chemo , I have kids and I dt know if stage 4 means there no hope ,

My first response to you as I’m in pretty much same boat, is get your positive head on, get as many positive and supportive people around you and get your first appointment and ask all the questions.

plenty of support on here as well

Thankyou I will

do that xx 

And I wish you all the best in your journey xx  

Hi Maca1973 

Sorry to hear about your diagnosis - it must be a lot to take in but this is a very supportive community. 

My dad was diagnosed with stage 4 oesophageal cancer in March of this year & was told they were hoping to treat it to give him more time but it wasn’t curable. However - their stance on this soon changed & they said their aim was cure. 

He underwent flot chemo over 9 weeks (was 8 but he missed a week due to an infection) & this worked well & dramatically shrunk the tumour. This meant he was then eligible for surgery & last Monday he went in for surgery (Ivor Lewis) to remove the tumour which was successful & he is now recovering in hospital. Next step will be mop up chemo in a few months. 

What I have learnt is that things can change so quickly and treatment is continuing to improve & as things change there is more they can do, so please do not give up hope.

Please keep us posted on how you get on & wishing you all the best. 

Hi Maca1973

I am sorry to read of your diagnosis, I know how much of a shock this would have been to you and your family,  but I want to Welcome you to the forum, I know, that it is not the place that you would really want to be but in my opinion, it is one of the best places under the circumstances. You have had some good responses so far, and I second what has been said already, Stay Positive (as best as you can, easier said than done maybe, but truly try and believe that You will get through this)

Different people react in different ways to treatment, and actually in the past 15 months I have found myself amazed at the many different treatments given for this type of cancer.

I don't know how much you have read, or what else you know about your type of tumour, there is information provided by Macmillan HERE if you have not already had a chance to look at it.

There is also financial benefits and support available for you, more information is HERE but happy to discuss further if you would like too, often it is the furthest from your mind, but sometimes getting these things sorted out whilst waiting on treatment options etc could be of great benefit, especially blue badge, for parking for appointments etc. 

My husband was diagnosed in May 2020, not given a great prognosis, with, or without treatment but, with treatment he has been doing really well.. 15 months on, still having treatment, and back to working from home 3 days a week.

There is always hope, and once you know exactly what you are up against, you will be able to fight it with everything you have. And if you need to chat, we will be here.

Also, the Macmillan helpline are here for you, their phone number and opening times are in my signature below, please reach out to them, they are experts in their field. 

Good Luck.

Lowe'

Let me give you some reassurance.

Three years ago, in September 2018, I was diagnosed with stage 4 Oesophageal (gullet)  cancer. It was inoperable. My treatment was   4 cycles of chemotherapy followed by chemoradio therapy.

It wasn’t the best of experiences but I have now had 3 clear scans, am eating more or less normally and have only minor residual side effects from the treatment.

1. So, take heart and be positive. There is lots of help out there. We found that  the staff and resources at the Macmillan centre at the hospital (UCLH) especially useful.   

Hi, I hope you have had more information and you are now getting treatment or at least you know what your options are.

In July 2008 my husband was diagnosed with OC and he was told 6 months was probable and 2 years would be very good. The oncologist decided on 6 cycles of ECX chemo and this worked well so he recommended 2 more cycles.  At the next scan we had a call from the radiologist to say that the tumour had virtually disappeared and the engorged lymph nodes were back to normal. 

The surgeon who had to refuse surgery initially due to the risk reviewed the case and said he would operate, my husband had a full oesophagectomy in June 2009 and he is now living a normal life.  (He has the very occasional problem with food sticking a bit due to scar tissue but that’s about it).

There are positive stories and I feel they need to be told, I know we are very fortunate that things went so well but we never take anything for granted and we are grateful every day for the outcome.

Let us know how you are getting on and take care.

J x

Hi,I want to join this group please. Maca, I have been there and understand your fears. Believe and you can get through this. In 2019 I was diagnosed with it and had two months of "flot" chemotherap to shrink the tuma, then a break for a few weeks. I had it removed plus part of my stomach in a lengthy opp at st Thomas's in london. Followed by another "mopping up" of chemotherap. I reached out to my nearest McMillan nurses and they have been fantastic with support and advice.. Trust me when I say this country has the best cancer treatment and consulting people you'll find... You have got to trust your team and don't be worried to ask any questions. I was very lucky. I had and still have great people seeing me through this. 

Wish you the very best. 

Hi Bondy

Thank you for joining the group, your experience and support will be invaluable.

Lowe'

Hi maca, just seen your post and was wondering his you were doing. Not sure if you could have the opp or not. It sounds similar to what I went through.