A New Place

Hi and a warm welcome to the board from me although I’m sorry to hear that you find yourself here. Yes it’s a horrible shock and coffee/tea and biscuits are a necessity. So what would you like to know? Some people like to research things as much as possible whereas others are happy to just be told what they need to know by the medical team. I’m happy to link some booklets in if you want so just let me know if that’s the case.

My first advice would be do not google! The information is out of date, misleading and downright scary in places - stay on here and the bowel Cancer uk Board. Once you’ve had your scans then the mdt (multi-disciplinary team) will meet and discuss your treatment plan. The waiting for scan results and meetings is one of the worst parts but once you have a plan in place then things will feel a little better - honest! Once you have your plan then break it into stages and focus on each stage at a time - don’t start worrying about things like chemo etc. until you know if you’ll need any. 

In the meantime try and stay as fit and healthy as you can. If you want to read about other people’s treatment paths then you can click on their names and it will take you to their profile page. You can ask anything you like on here - there is nothing too daft or embarrassing!

Take care

Karen x

Hi,

So sorry you have found yourself having to join our group. I had my diagnosis last summer so I know how you must be feeling, especially if you haven't got the full picture yet.  This period of waiting is very stressful as your mind can tend to wander, and you come up with all kinds of scenarios, mostly of the worst case variety. 

You will feel much better once you know what you are facing and have a treatment plan in place to deal with it. The positive news is that there are many members of this group who are survivors who are living long and happy lives, so even if you do get bad news when you get the scan results, you can be assured that bowel cancer has a good track record for survival compared with other cancers. .

So good luck with the scans and the results and look forward to hearing how you are getting on in a few weeks or so,

regards Sean 

I was in your position after a colonoscopy on 1 Feb. Any help I can give please ask, see my profile. Yes the initial period I liken to a rabbit in headlights, and rather surreal. Once you have had your tests and waited for the MDT meeting things will probably move quite fast. I am one who must know what's what, so I did research as much as I could, but only on imminent things. Others differ, but knowledge to my mind helps, it helped me process it all.

All the best for your unexpected journey.

Hi wayfollower and welcome to the forum , I know you would rather not be here, I guess none of us would, you have been given excellent advise from Karen, she and others told me the same thing when we joined the forum in May when my husband age 68 was in the almost exactly same place, although he never got the promised tea and biscuits!

ask away at questions thoughts you may have, it is right once you have a plan it does strangely feel better.

i will leave it there for now but sure others will be along to welcome you too, keep posting and all the best.

Evening Wayfollower

I left a long post on "Supporting partner with bowel cancer," I think some of it may be of use to you and your husband.

I hope all goes as well as possible.

YNWA

Mike

Hi

BIG thank you to all the responses - all much appreciated 

Things moved quickly......................

Had the CT scan Thursday - Hospital team meeting Friday and by 4 o clock I had an update and REALLY pleased to hear the cancer has not spread - By 5 o clock I had an appointment booked with surgeon (on Tuesday 7th) to understand what is to be offered / considered 

So any links to booklets would be gratefully recieved

Any thoughts on any questions I should raise (I have started this list but being in "A New place" - I happy to recieve anything that has been gleaned from others experience)

Thank you again to everyone 

Regards

Hi and good news that there is no spread. Presumably this preliminary meeting with the surgeon will be to discuss the next steps forward. Depending on the size and location of the tumour they may recommend chemoradiotherapy before surgery which can shrink the tumour allowing them to ensure they get clear margins (ie. remove the tumour and some of the surrounding clear area around it). There is then a 6-10 week wait while the radio carries on working then another scan. So you might like to ask 

Will I be having chemoradiotherapy before the operation?

Will I need a stoma before or after the op? Would this be temporary or permanent?

Do you hope to perform keyhole or open surgery?

I would recommend taking someone with you as 2 pairs of ears are better than 1 and a pen and paper to jot things down. I’ve heard of people recording their meeting on their phone but you’d have to check that the surgeon was ok with this.

Ive attached a couple of booklets below so hope they help

https://bowelcancerorguk.s3.amazonaws.com/Publications/YourPathway

_BowelCancerUK.pdf

https://bowelcancerorguk.s3.amazonaws.com/Publications/YourOperation_BowelCancerUK.pdf

Take care

Karen x

bowelcancerorguk.s3.amazonaws.com/.../YourPathway_BowelCancerUK.pdf

Karen

Thank you so much for all your support and help 

I have followed the second link OK and started o read that but the first link comes with an erroe message - is there perhaps another way I can get that ?

Today I have an afternoon of preparing for my appointment with the surgeon tomorrow afternoon and then I am sure at some point there will be more questions - I will be in touch 

Thank you again for everything 

Hi

Yes I saw it hadn’t come through properly so popped it in a post below on its own so you should be able to access both My Pathway and My Operation.

If it’s still a problem let me know and I’ll have another go

Karen x