Newly diagnosed

Hi, so sorry to hear about your diagnosis. Please try to stay positive. My mum has just been through what you are beginning with and she is on the road to recovery.

From my experience and what I read it should take no longer than 28 days from diagnosis to treatment commencing, I think this is guidelines the NHS has to meet. The MDT team meet weekly so your diagnosis and plan will be discussed within 7 days and then you will be informed of the next steps but I imagine your PET Scan should be within the next 14 days.

Stay positive and I wish you all the very best, you can beat this.

Chris

Thank you for the information about timescales, it gives me a better idea of when to expect things to start happening.

I really just feel so desperate to get started on this journey, face it and get through it all. Glad your mum is on the road to recovery, hopefully that will be me in a few months time.

Shondon

Hi Shondon

Sorry to hear your diagnosis, though happy to welcome you to this forum.

I was diagnosed in April 2017...so next week is my 4 year Anniversary. Like many here , we enter a whole new world and chapter in our lives. I knew nothing of this condition nor what to expect. With the great help and support of my daughter , we tried to capture our journey and hopefully share to help anyone else who may need to take a similar path.

Here's my link

https://myoesophagealcancerjourney.wordpress.com/

Good luck with your Journey. Ask anything anytime. There's a great crowd of genuine support here - many who helped me along the way too.

Best Wishes

Pete

Hi Pete,

thanks for your reply and the link to your journey, it’s good to get a clear idea of what’s ahead.

I am a fit person anyway but have started doing more walking and exercise to get myself as ready as I can be to face the journey ahead. Positive attitude will be with me all the way if I can, I fully intend to get through this and still be here for my husband and son for years to come.

I have no doubt I will have many more questions along the way and feel reassured there are people like yourself on here

ready and willing to help.

Thanks again for the support

Shondon

Hello Shondon,

It's the waiting that gets your mind thinking negatively.

My mum was diagnosed on October 1st last year. 

Within 2 weeks she a CT scan, followed by a PET scan within the month. We had to travel to Stoke Uni. hospital as PET scan equipment isn't available in all hospitals, just too expensive to have in all hospitals.

These results give your oncologist the staging that is so important.

We had the staging, the treatment plan, & any questions we wanted answered in just 7 days. (After the PET scan.)

The treatment began at the start of December, Radical Radiotherapy. It was 20 doses over a 24 day period. Each dose lasted just 20 minutes & it did not & will not cause any pain.

Now, if you are for example a stage 2, you won't need as many or such potent doses. But that is just an example again.

Staging is 1 to 4 normally, so what I'd love for you is a stage 1 outcome.

Back to my mum for a moment. During the time between diagnosis & the treatment starting she had little things like advice on eating, the best painkiller's if you need them, & the biggest part, a Peg feeding tube inserted, & I'll be honest, PEG tubes are  not nice, fitting & the after effects. But you may not need one, it's only to help people who cannot swallow very well.

Please do not worry, & pester the relevant hospital departments for info. Or they may forget, they may even not communicate between each other. You should have a liaison, usually in endoscopy, they can tell you what you need to know, like the questions you've asked here. Again, be a pain, keep ringing them.

So in a nutshell, my mother was diagnosed, scanned, had her feed tube fitted, & finally had those 20 doses. 

Time span, Oct. 1st to Dec. 24th.

Last thing to say is that the different departments meet after hours on Tuesday evenings, to discuss individual cases. So if you had a scan on a Monday or Tuesday you'd have to wait until the Wednesday the following week. (Please note that this is how our hospital does things, yours may differ.)

I sincerely wish the best possible results for you, & do not worry until you have something to worry about, easy to say but please try your best.

Anything else you need to ask, I'm always looking to give advice if I have it. So don't feel you are alone, all the people on here are great & there are many pieces of advice that others can offer greater insight on.

My very best wishes Shondon,

Graeme.

Hi Shondon

Welcome to the friendliest forum in the world (slightly bias and possibly over-exaggerated ) as you can see from your responses so far.

Gosh, the waiting is terrible isn't it... Not long now though, you will start to get your answers. I won't give anymore guidelines but will offer an area of the site to visit that may be helpful if you have not found it already.

Here you will find the Macmillan information on Oesophageal cancer

Please keep in touch and let us know if you need us.

Thinking of you

Lowe'

Hi Graeme,

thank you so much for your reply and sharing your mums journey so far. I am feeling reassured now that I have a better idea of how long things will take to get started. I too am hoping for a stage 1 diagnosis, no harm in hoping. My very best wishes to you and your mum as she hopefully continues to recover.

shondon

Thanks Lowe x

Feel free to vent or ask for advice. It's almost like a family, people on here want to help, Just a very warm & friendly forum. 

Best wishes & my hope for a great result for you.

Graeme.

Hi Pete,

You put so much time & effort into your link. It's just so inspirational. My dad had the same treatment including the Ivor Lewis op way back in 2006. Those staples made me wince. The post op chemo was worse than the op itself, my dad 's quote. But 5 years later, hey presto, free of cancer.

A great read & a lovely smile to boot.

Just want to say thank you for making this diary.

Very best wishes to you & your family Pete.

PS: You are so right, you find out who your real friends are in times of need. And having real friends makes you a rich man.

Regards,

Graeme.