Tumour

Sorry to hear your news Emma - it’s about the worst moment of your life when they tell you that news. I’ve had it twice & I’m still here!

Little bit of advice - stay well clear of google. It’s not your friend at this time. Nothing good will come of looking on there unless you stick to the NHS & Macmillan sites.

You can get all the support & advice you need here.

I was diagnosed February 2018. Had my treatment & was given the all clear in Sept 2018.

Now 12 months later I’m still all clear & doing well.

So stay positive, this can be beaten & there are plenty people on here who prove that fact.

All the best.

Gus

Thank you so much for your message Gus, I’m so sorry you’ve been in this position twice but  it fills me with some hope that you are currently all clear.

I’ve stopped Googling, this weekend has been the longest of our lives, I think I’ll find it easier to come to terms with once I know what’s happening and a plan.

Thank you again for your time Gus.

Best wishes,

Emma

Hi Emma, sorry to hear about your results. I went for an endoscopy and told my wife I would go myself as it would probably be a week or so before I got the results. How wrong was I, 45 minutes after the endoscopy I was told I had a tumour. The doctor said I didn't seem surprised, I told her I wasn't as I had been a smoker for 45 years. She said it was most likely caused by acid reflux, which I had been bothered with for about 30 years. Anyway, that was in July 2016 and I had the Ivor Lewis surgery on the 3rd October 2016, I've just celebrated being all clear for 3 years. You are probably still coming to terms with it and it does take time. Hopefully after you phone you will get an appointment quickly and start the ball rolling with the staging and scans. Once that is done you will be offered a treatment plan hopefully with a cure being the outcome. There is nothing wrong with doing a bit of research as long as you have the sense not to get caught up on statistics and not to believe everything you read. I found it better for me to have done that rather than blindly doing what I was told, I had information and was able to ask questions. As hard as it may sound having a positive attitude really does help. Take time to write down questions to take to any appointments and pen and paper to take notes. Also preferably have someone with you. Please post any questions you may have and someone will answer you. Good luck and kind regards Frank.

Yes, it’s a complete surprise, not to say shock when they tell you that it’s almost certainly cancer. My endoscopy was six years ago, and I got the same news given to me in the same way!

Gus gave to some good advice, stay away from Google. All you need to know is found on the Macmillan site.

Your specialist nurse will become your new best friend. They don’t sugar coat things and they won’t talk statistics to you as they know that you can’t apply statistics to an individual. They will be able to tell you what tests and investigations need to be done and how long it’s likely to take. It’s a horrible horrible time waiting to start your treatment.

So good luck with your talk with the specialist nurse. Keep a journal to record what was said, by whom, and questions you want to ask at your next appointment. Don’t be afraid to ask others for help and support when you need it.

We had to cancel our first trip to Australia just a few weeks before we were due to leave because of my diagnosis. We have since been to Australia twice and have travelled extensively in the last five years. So there is still life to be had. It makes you appreciate that. I’m happier and fitter now than I’ve ever been, 2063 days cancer free.

Thank you both, it is reassuring to know that the outcome isn’t always bad. I spoke with my specialist nurse this morning, I have been referred for an urgent CT scan to see if it has spread, she said that it takes between 5-10 days for biopsy results and the will discuss my case at their big meeting on Wednesday if the biopsy results are back, if not it will not be until next Wednesday.

Brent, I hope we also make to it Australia one day, I’m so please you did (twice).

best wishes,

Emma

Just thought I’d give an update.

I had a Ct scan on the 10th and a meeting to discuss results of CT scan. Staging of Tumour is T3 N1 M0. The tumour is in the oesophageal junction so in both oesophageal and top of stomach. Tumour size 6cms and is Adenocarsinoma.

Stayed at a London hospital from Sunday until today for tests. I had a Pet CT scan and endoscopic ultrasound on Monday, Endoscopy and staging laparoscopy booked for Tuesday but had today due to issues with theatre.

I was discussed at the MDT meeting this morning and met with surgeon to discuss the plan of action. I will have 4 cycles of FLOT, 6-8 weeks break before surgery, they’ll remove a large section of my oesophagus and as much stomach as needed as well as affect lymp nodes and those in the area of the cancer.

The surgeon said it was unusual to have this type of cancer at 39 but my age may also be beneficial for the surgery. I feel surprisingly relaxed at the moment, I’m sure this is because I have a plan. I know it’s going to be a long challenging road through, I’ve been reading blogs and journeys on this site but this has also give me hope. So thank you.

i have signed up to be a participant into an oesophagual cancer research/study. This will hopefully help to positively change the way it is diagnosed/treated in the future.

Best wishes,

Emma

Emma,

You are on a good treatment pathway, one that many of us here have travelled. 
I didn’t have FLOT as it’s relatively new, I had ecx, but I had the same surgery (the Ivor Lewis) more than five years ago. It’s a slow recovery, but as you say your young age is in your favour. Keep as fit and active as you can during and after treatment. 
Ask questions and keep yourself informed. Become an expert in your condition so you can understand what your body is going through, so you can be kind to it!

I wish you a safe journey!

Thank you Brent, I already feel like I know quite a lot from the research I have done on this site and reading through other people’s experiences. I have stayed away from Google and this has help with the stress/anxiety of the situation.

i really am so greatful  for what I have read and the knowledge I have gained on this forum. It certainly has made the conversation with the surgeon less overwhelming. 

Im sure I’ll have some questions during my journey and hopefully as time goes by I’ll be able to offer support to others.

Hi Emma,

I am sorry to hear about your diagnosis. I would like to wish you all the best for the excellent treatment plan they have laid out for you.

Just like you, my husband has been diagnosed with the same condition at the age of 39 this May and now after 7 cycles of FLOT and surgery, he is on the path to recovery as cancer free.

Try to be patient and stay positive, and you will see that you will come out with victory on the other side. Being younger helps with the recovery and you will see that you will be able to tolerate the chemo far better.

feel free to reach out as necessary and as other recommend try to stay away from statistics and google.

It is okay to ask questions and be demanding of your medical team as your life and recovery depend on it.

best, 

Oya

Thank you Ora,

Im so please to hear that your husband is on the path to recovery as cancer free.

I’m sure the journey you’ve been on with your husband has been so tough on you also. I hope you’ve had plenty of support to.

Best wishes,

Emma