Post Colonoscopy Awaiting Results - Told Tumour and Cancer

Don't knock denial, it's a powerful coping mechanism. It's hard to take in something like this and denial allows your mind to take rest breaks. And with you being so young, I'm so sorry!

Most of the folks doing colonoscopies have gotten really good at recognizing cancer vs normal polyps and such. So there's a high probability that it's cancer. The only definitive diagnosis comes from the biopsy. 

There will be a whirlwind period of scans and an MDT meeting before you get your treatment plan. This is the worst period of all. The anxiety is off the charts. 

Once you get a treatment plan, things will get better. You will have things to do and be able to plan a little. You'll also get information specific to your situation. You are not a statistic so stay off Dr Google. 

In the interim, try to stay busy and keep your mind off of it. You won't do this perfectly, it will creep back into your thoughts no matter what you do. 

I hope you'll let us know how its going. Sending virtual hugs. 

Thank you Susan13 for your lovely reassuring reply! It has really meant a lot - thank you so much for taking your time to read and reply with your advice.

Yes, you are right maybe denial is my method to allow my mind some respite whilst waiting for the results along with next steps and appointments etc. For sure I need to stay of Dr Google - I’ve tried to stay busy in the day but at night my mind is swirling with questions and thinking of every possibility then the googling starts. I am so glad I have come onto here and had the courage to post something and had someone so kindly respond whom has had experience and understands (so thanks so much again).

Yes, I will be sure to post how I am getting on and the next stage :) 

Hi JWar293b858d and a warm welcome to the board from me. You’ve had a brilliant reply from Susan and, as she says, the people doing the colonoscopies have a good idea of what they’re seeing - they told me straight after that they were 99% sure it was cancer. 

Once the results of the biopsy and scan are back then your team will meet and discuss a treatment plan for you and once this is in place then things will honestly feel a bit better. Bowel cancer is notoriously slow growing but very treatable and there are lots of success stories on here.

Please stay away from google - it can be out of date and can take you down rabbit holes to all sort of places - stay on here and the bowel cancer uk board and ask anything you like.

The same goes for looking at stats - you are an individual not a statistic and things like 5 year survival rates are already out of date. I’ve been on this board for 9 years and I’ve seen treatment change and improve over my time so it’s constantly evolving. 

I’ve attached a link to a booklet that I was given at my first meeting which may help with terminology, potential treatment etc.

https://bcuk.adidocdn.dev/Publications/Bowel_Cancer_UK_Your_Pathway_V10.1.pdf

We’re all at different stages of treatment and recovery and happy to help and support you through yours so please keep posting and ask anything you like - there’s nothing too daft or embarrassing on here!

Take care

Karen x

Hi Karen,

Thank you for your warm welcome and reassuring advice it means a lot. Also thanks for the attachment of the leaflet it is very informative and I’m sure along the journey I will refer too it lots in order to understand each stage of the process.

Thank you so much again - and for reassuring me nothing is daft or embarrassing. I will be sure to try and stay off google and come onto here for all my information x 

Hi so sorry you are dealing with this at such a young age. There's no right or wrong way to behave. Denial has its place as Susan said. It can be so consuming, particularly these early diagnosis days.

I saw my tumour on the screen and was told they were 99.9% sure it was cancer. Tbh when I met the surgeon to get biopsy results to confirm it, and get the treatment plan, I felt so much calmer. Something around being in the care of specialists who treat people with bowel cancer every day. It honestly does get better but I remember so well the sheer anxiety is overwhelming. 

Sending a big hug xx

Hi Arial88, thank you so much for your message. Yes I am slowly learning there is no right or wrong way to handle it and everyday is a rollercoaster of emotions.

I can relate as I saw mine as well as I awake during the colonscopy. I think that is where my denial is still playing as I saw the tumor bleeding and its appearance and they took 10 biopsies. But as the lovely staff act so calmly I was trying to convince myself everything was okay. Funny what tricks the mind does. 

Had a call from my designated bowel specialist nurse from the hospital today and she chatted and she did confirm it and explained they are very sure it is but biopsies help further diagnosis and staging. Should get my CT scan booked in the next day or two. 

Yes I can imagine it must feel so much calmer when you have full news and plan in place. Thank you so much for sharing your story with me as it helps hearing from others and I hope you are all okay too x 

Hi,

Just wanted to update after all the lovely messages and kind support from the above people and whoever might be reading it now or in the future whom may be in a similar position.

As expected the biopsies confirmed cancer which didn’t come as a shock because I was told mostly likely it is - so surprisingly I felt quite calm and prepare when told that news today.

Told the CT scan showed something on the liver which they are not sure if it is cancer or something else - so need MRI and PET scan. So another step to find the whole picture before meeting oncologist for full treatment plan. So still more time to wait to understand the whole picture but have been told I will need chemo before any surgery as need to shrink the bulky tumour. 

As said by others I feel a bit less erratic and anxious and calmer knowing I am closer to finding out all the answers to what is to come. 

Sending love and support to anyone going through anything similar x

Hi my husband has had similar diagnoses though his was rectal.

his tumour required shrinking first and are awaiting results from latest Scans to see how the treatment has done.

my husband felt calm having his treatment and saw it as a positive to shrinking the tumour using different words than that. He would say come on “let’s shrink the ……” 

he has found having only a small amount of knowledge helped him so being pretty ignorant to it just taking each step at a time and not looking to far ahead this worked for him.

even any further treatment he is waiting for the oncologists to tell him.

there is power in denial as he has remained pretty much the same, positive and took the treatment in his stride. 
wishing u well and ask here if need support 

one day at a time is if can be achieved the best for you 

take care x 

Hi BradleyJ 

I hope yourself and your husband are doing well. I hope his latest scans shows his treatment has worked and has shrunk. Yes I completely agree with you and think yourself and husband have a great mindset. Definitely gives you more empowerment and control saying let’s shrink it. Especially when everything else seems out of control.

I feel myself I try and use light humour to make it feel less daunting. My sister said I should give my tumor a name - so brain storming names so I will be following your husband mindset and say let’s shrink (l unknown name haha). 

Thank you for your great advice and yes certainly taking it step by step. I hope you’re doing well as I understand it must be a lot to help support your husband, but it sounds like you are a great team. Wishing your husband the best and please let me know how you are both getting on. 

Best Wishes, J x 

Thank you we will and glad you got the dotted word

have some fun picking a name for the tumour