Helpline
Speak to a member of our Information Support Team
(Call-back service – 24h answer machine)

020 8973 0011

or email nurse@beatingbowelcancer.org
Beating Bowel Cancer Community

New to the forum?

Jo

Any one else get a first diagnosis as T4, N2, M1?

I f so - any good advice, top tips etc would be gratefully received.

tigercub

Hi Jo .try to keep positive thinking going not always easy . waiting for results is always hard .don't be surprised if docs tell you things have changed that seems be pretty normal .my meetings with oncologist differ every time and go off a different path .bit usually I don't feel ill or in pain so it's hard to believe what they tell me .but treatments are so good .good luck chin up

charleyb

No but my hubby was T3c/T4 N1 M1, check out his story in my profile. Stay strong @Jo there are some really great treatments out there, and more coming along. This first bit when you are just diagnosed is the worst part, once a plan is in place it will get a little easier. Big Hugs :x::x::x:

kerry

My dad was initially diagnosed as T3 N1/2 M1 and he has just had radiotherapy to shrink, then an operation to remove the tumour and lymph nodes from his bowel. The pathology report should be returned by the end of next week and things might change then.

sophia

Hi jo. Yes me! Sorry to hear you’ve foun yourself here but it’s a great forum with some wonderful people who are all on hand to help where we can.
I have seen from your profile where your cancer is. Im certainly no expert but I would say it’s likely they will give you chemo to shrink and then reassess and maybe then resect.
Few questions, where has it spread to? Assume they have done a biopsy so try to find out what mutations (if any) you have.
Please feel free to private message me any time if you have any questions or message me here. Always happy to help where I can!
This initial part is the worst as you try to wrap your head around everything but once you have a plan in place it does get easier. :x::x::x:

Jo

Hi @sophia
My cancer has spread to my liver and possibly my lungs but hopefully not. They have done biopsies but i haven't had any feedback yet. Thanks so much for responding to me - it means a great deal to me. :x::x::x:

Elmac

Hi @Jo - best bit of advice I was given, was to record any consultations, telephone calls etc with Dr's, oncologists, nurses etc - I downloaded an app for 99p to my iPad and iPhone - Audio Memos - works well and it means that you can listen to it later and take in all the things that was said. Just ask them / let them know and you will find that they are in total agreement as it means they don't have to keep repeating things.

Baxter2

Good morning @Jo and a very warm welcome to the forum! I'm pretty sure you'll soon get to know us all and benefit from the shared experiences, information and advice offered here!

My initial diagnosis was not the same as yours however, I did progress to take 4 withinn the first 5 months. 😩

This early period of limbo can really mess with our heads as there are usually far more questions than answers whirring around your head, especially at nights! There are some good factsheets you may want to look at in preparation for consultation with oncologist/surgeon. Maybe use this time to jot down all your questions beforehand and make sure you take a useful other pair of ears as it can be so difficult to retain all the information shared when anxieties are raised. I do like @Elmac's idea of recording conversations with agreement obviously!

Hope you're having an ok Sunday and hope to see you on the forum as often as you wish! You'll find a great crowd here who all absolutely 'get it'!

Sending all my very best wishes,

K💛💜💙💚❤️

sophia

No problem @Jo. Best thing is to wait for all the info from your oncologist. Some great tips already on how to prepare for that meeting.
Best of luck :x::x::x:

mem

Hi and a warm welcome from me too @jo.
I am sorry to hear about your diagnosis, but I'm so glad you have found us at no doubt a very distressing time for you and your family.
I was T3, N2, M1 at diagnosis and that was nearly 4 1/2 years ago now. I'm still having a few 'inconveniences 😉' with the M1 bit, but doing really well. A lot easier said than done I know, but please try to remain hopeful, there are a lot of positive and encouraging stage 4 experiences on the forum and we will all be right here, to provide you with support and understanding, whenever you need.
Sending a huge hug and love your way and best wishes for your ongoing investigations :x::x:

Jo

Thanks @Elmac. My hospital has signs up encouraging everyone to record their discussions, so I did and it is a great idea. Plus I am taking a third pair of ears (other than me and my lovely husband) to listen and question. My son did this for me last week and it really helped. What a great bunch of people on this forum. It makes a lot of difference to know there is so much support out there - thank you again

Quote from @Elmac:
Hi @Jo - best bit of advice I was given, was to record any consultations, telephone calls etc with Dr's, oncologists, nurses etc - I downloaded an app for 99p to my iPad and iPhone - Audio Memos - works well and it means that you can listen to it later and take in all the things that was said. Just ask them / let them know and you will find that they are in total agreement as it means they don't have to keep repeating things.

Jo

Thank you @mem for your hug, best wishes and support - it means a great deal. XxX

Quote from @mem:
Hi and a warm welcome from me too @jo.
I am sorry to hear about your diagnosis, but I'm so glad you have found us at no doubt a very distressing time for you and your family.
I was T3, N2, M1 at diagnosis and that was nearly 4 1/2 years ago now. I'm still having a few 'inconveniences 😉' with the M1 bit, but doing really well. A lot easier said than done I know, but please try to remain hopeful, there are a lot of positive and encouraging stage 4 experiences on the forum and we will all be right here for you, to provide support and understanding, whenever you need.
Sending a huge hug and love your way and best wishes for your ongoing investigations

WendySue

Hi @Jo just want to give my good wishes and give encouragement as I was diagnosed T4b N1 (8 LN with cancer) and Mx meaning metastasis was suspected due to suspicious lung nodules and later confirmed as M1. That was nearly 5 years ago and I am still pursuing options. I have found the information and support on this forum to be fantastic and sometimes draw on it in discussions with my medical team!
Wendy :x::x: