Hi Nicole, this must have been an awful shock, am so sorry. My husband is being treated for same cancer, diagnosed in November. His original tumor was 4cms, but PET scan revealed spread to lung and lymph nodes. Your mums scan will help them check for any spread, and decide the best way forward for her treatment plan. Although its easily said, try not to be too scared yet, there are lots of positive stories here of people who have successfully batttled this cancer even when they were told they wouldnt. It is wonderful that you are such a caring devoted daughter, and clearly putting mums needs first, just don't forget it is important to take care of yourself too, its not an easy situation to deal with. We are always here if you need any support, wishing you both the very best of luck going forward x

As you know yourself a very big shock and currently finding it difficult to deal with but I think it's because it's still new. I see thanks for explaining that for me, so after the PET they decide the treatment plan, if you don't mind me asking what was the plan for your husband? Yes I certainly am trying to remain positive but very scared of losing my mum it's heartbreaking and with everything at the moment with COVID it's very hard. I will look after myself too , been trying to remain well for her and to be able to care and support her throughout the tough road ahead. Thank you for your response I really appreciate speaking to someone in the same situation xx

Of course I dont mind. They have put my husband on EOX chemotherapy, and this is every three weeks, so far its been a mixed bag, first cycle was not too bad, second one, he got very tired, and upset tummy. 
They also tested his tumor for HER2, and his was positive so he can have a targeted theraoy alongside his chemo, that will hopefully delay the spread (Herceptin) only one in five people have the gene. 
He is not able to have an operation due to the spread, but had it not spread they would have operated and that is a common outcome for this type of cancer. (Oesophagotamy) 

He was struggling to eat during the first cycle, but the second round shifted something, and at the moment he is eating well! He is a fit 63 year old. 
We have found all the medical staff so kind and helpful so far. Dont be tricked by google, there are many many people living many years with cancer these days. I was totally overwhelmed to being with, but am already feeling more informed, and more positive. I am sure other people will be able to contribute much more than I can, as I am a newbie too! Sending you a big hug. Take each day as it comes x

Thank you so much, you already have given me hope which Google as you said doesn't really provide lol. I think as time goes on you sort of have to deal with it but it's the unknown at the moment but fingers crossed . Best wishes to you and your husband, keep in touch and I hope he recovers soon xx

Sending lots of luck to your mum for her tests, if you need any help understanding her results please don't hesitate to ask here. 

Hi Nicole,

Daisy’s response covered almost everything I was going to say. 

The only thing I can add is make sure someone is with your Mum when she discusses the options for her treatment plan with her oncologist. Some people don’t expect to be given options so it is best to be prepared for that. Don’t be afraid to write down any questions you have before the consultation and write the answers down as research shows most patients forget about 60% of what they are told when they are stressed - we often even forget to ask questions which are important to us. 

We all get scared by Dr Google as there is a lot of outdated data and misinformation out there. Each patient and each cancer is subtly different from the next and responds subtly differently to treatment. My own side effects from chemo were relatively mild with little hair loss and I was lucky enough to have a better than normal outcome. It’s a bit of a lottery and agreeing to start treatment is like buying a lottery ticket, no chance of winning without one.

A loss of hope prevents many people from choosing to start treatment, which is why it so important to help out loved ones remain hopeful.

I do hope things go well for your Mum.

Good luck

Dave

Hi Nicole,

How're you doing? I'm so sorry to hear about your mums diagnosis. I can't answer your specific questions, it's probably best to speak with your mums doctors and nurses, but if you're not already I recommend having a pen and paper with you for all appointments/calls with the doctors as it can be a lot of information to assimilate and digest. I'm 28 years old and back in September 2020 my dad was diagnosed with Stage 4 Esophagus cancer, he's 64 and otherwise very healthy. My dad had a couple of scans to determine the extent of the cancer and the best course of treatment. Unfortunately it was too far gone for an operation, there were some further tests to determine certain proteins that he had to see what type of treatment he could have. My mum was is primary carer and is doing a wonderful job of it which i am sure you will to. Your mum is very lucky to have such a caring and thoughtful daughter by her side to go through this with her. I hope you too have family and friends to prop you up along the way. There will probably be a lot going through your mind right now,  but everything you feel is valid. Every body is different and our experiences will all be different but know you are not alone and what ever comes next there will be people around to support you (a pen pal stranger such as myself :) ). It's very good to talk. No doubt it all feels incredibly scary right now but someone gently told me when my dad was diagnosed,  that while there is pain, fear and so much unknown, there are also special moments to come. With my Dad being stage 4 (it had spread to his lymph nodes and liver) and going by how he was pre chemo (not eating much, food getting stuck, losing weight, weak and fatigue) we weren't sure on our timeline. I am delighted to say, as of this week, following his first cycle of Folfox chemo his cancers have shrunk and he's back to eating normally (he loves his food so this was a big relief for us and a special moment). The cancers shrinking was unexpected and the fight still goes on and he will continue to have chemo but I wanted to share a positive story to let you know that they do exist. From what you have said your mum has options for treatment which is a good starting position to be in. From our experience my mum did a lot of research about types of chemotherapy and nutrition which helped a lot (although, be careful google doesn't always tell the truth and stats aren't always up to date). If you'd like any recommendations on nutrition I'm happy to ask her. Again, every one is different but it may give you some ideas to try. 

There is no instruction manual on how to deal with such situation, no right or wrong emotion to feel. Take time for yourself and be patient with yourself. Sending you and your family lots of love. Izzy xxx 

Mum is currently having the operation to remove her cancer on the 28th of June so ver nervous at the moment. Sorry I have not been on it's been a crazy few months. Thank you so much for the lovely message, I hope your dad is doing well xx

Hi Nicola, 

I would regard me & husband 'world experts' on this whole affair.

There are a lot of 'oesophageals' on here, growing literally by the day! Many of us are on another 'board' a board started by RayB called 'oesophageal cancer diagnosis' people joining all the time, mostly joining in the throws of the diagnosis. the youngest about 37!!!

Your Mum's presentation/symptoms are seemingly what most present with.
A stage 4 + spread guy has just joined, he was diagnosed about 2 yr ago. where his chemo and immunotherapy was sooooo effective he is now having the op- Daisy take heart xxx Good to see you.

So Nicola- my 56 yr old husband was diagnosed totally out of the blue, last August. He is now post everything and back at work. Cancer free. Back on beer and pies grrr. Working on rebuilding muscle mass. It took 9 months. There are about 6 others that are post op and just finishing post op chemo- what a delight that is! The emotional stuff - well , that that last longer. We still look at each other and say 'what just happened'

For us, this diagnosis period was the absolutely the worst worst bit. Once the 'verdict' and plan was in it felt better.

Do not read google , on line stuff -although we all do (: -it is a horror show, nothing like the 'experience' we have had.

So, know you are not alone x

Best wishes

Hilts