Waiting for Consultants appointment but I know it’s terminal after MRI and CT Scans

Hi Scared_Mummy. Please take a deep breath and don’t let your thoughts become facts. I’ve had 2 MRIs and 1 took a lot longer than the other and when I asked why he explained that my Bowel had been ‘jumping about’ so he took some more photos to make sure they were really clear. Maybe they couldn’t wait to get you out quick enough because they were running behind? I’ve also been told at a CT scan that they don’t know what they’re looking for, they just know what area they’re told to scan? If, and it is if at this point, there is some spread then it can still be treatable. There are people on here and the Bowel Cancer uk board who have had spread and are now ‘no evidence of disease’ or are having long term treatment and ‘living with cancer’ not dying from it.

Please give the nurses on here a ring on 0808 808 0000 and have a chat with them? You need to be fit and strong to deal with this and all the worrying and lack of sleep is going to wear you down. 

Sending you a big virtual hug

Take care

Karen x

1. Oh bless you, it’s just such an awful time and I know it’s easier said than done but please try not to read too much in to it all and second guess. 
   I have always been told please don’t ask them after the scan as the results really have to be looked at really carefully by all the professionals before results are given out. 
   As Karen said there is so much treatment available now, and new treatment all the time. I am having immunotherapy  myself which is pretty new treatment. 
   And also maybe they got you out quick because of Covid-19. ... I know they don’t want people hanging about. 
   
   Take care and keep safe xxx

Hi I was diagnosed 31st Dec with a colonoscopy.when I went in for all my scans no one told me anything , they just scan where they have been to , then goes to the oncologist, I was frightened too when they told me it took me time to get my head around it , but once I had my first meeting with my consultant she put me at ease , Told my teen daughters which was easier than first thought and made it easier for me. I have found speaking to people going through it in front of me as been a god send. I went for walks to clear my head and I am now in a positive place and start my chemo/radiotherapy in a couple of weeks . 

Hi Scared_Mummy

What a tough time you are having and who can blame you . The process to enable the correct treatment plan does involve the gathering of information and that creates anxiety !

I stopped counting at 35 scans that my mum has endured and I can assure you they do not give a glimmer of information as the others have said . In fact they would be sacked if they did before it’s formally reported . 
So I think the blank looks are more to do with feeling professionally compromised. I do understand though . I had a mammogram recently and as I was leaving the girl said to me as I left “ if you are called back to see the consultant it’s just down the corridor”. She had looked at the screen before walking me to the door . My mind went into overdrive . It was absolutely nothing .

Once I noticed a different procedure happened with my mum which did not happen in her other 34 scans and I knew then she had a recurrence. I never mention on here what it actually was . It is nothing like you have described.

My mum was always a stage 4 patient from diagnosis and despite it all she is here 11 1/2 years later so even a spread does not necessarily mean it’s inoperable or untreatable .

Hopefully they can put your mind a rest soon .

Court 

Dear Scaredmummy

Firstly it is unlikely the radiographers knew exactly why they were doing the scan, they often don't.   Also they often don't see the final images, they have alot of other things to do when performing a scan.   Bowel cancer,  according to my Dr wife, is quite a slow growing tumour.   You are justifiably worried, everyone who has received a cancer diagnosis is and you are desperate for accurate information.   Unfortunately none will come until after the MDT - and those are the people who matter, it is the surgeon & oncologist's opinion you need not a radiographer's.  

Treatments are varied and largely successful,  I hope you have a long & fulfilling life ahead of you, try not to let the doubts & fears overwhelm you and project fears onto all things.  I also hope the information you need so much is quick coming through.  Thinking of you

YNWA 

Mike

Hi Scared_Mummy

Your message made me cry. From your username I assume you're young with children. I'm a dad to two little boys. 

Your message made me cry. I remember those feelings so well. It's absolutely desperate, isn't it. Those first weeks, when you know you're sick but you don't know how badly. The thought of leaving your babies behind. For me they have been the hardest part of having cancer... The hardest thing I've ever experienced.

I was diagnosed with bowel cancer last June after years of misdiagnosed symptoms. I assumed I was going to die, too. Unfortunately, when I did get the scan results, it was worse than I expected. It had spread to 70% of my liver and some lymph nodes and the primary tumour in the bowel was really big. 

But, 8 months on, I'm still going strong. All of the tumours responded really well to chemo and we have a treatment plan that we believe may leave me cancer free. It's been hard and there's still a long way to go but we're all really hopeful. 

Don't lose heart. Survival rates have improved hugely over the last 10 years and the doctors are incredible. There's nothing to say your cancer has spread and, even if it has, all is not lost.

The waiting is hard but you'll get through it. I'll be thinking of you. 

Thank you for your kind reply, I’m sorry my message upset you, yes the thought of not seeing our children grow up is worse then any pain or cancer. I’m glad that you’re responding well to the chemo and have a treatment plan. Everyone keeps saying how much treatment has come on over the years and more and more people are getting cured. I pray for the day they find a cure and no one ever has to ever suffer our pain xx

Scared_Mummy i can truly relate to your feelings being a single parent to my 13 year old  daughter and my elderly mum’s carer.  The radiographers couldn’t share any information which is frustrating for you. Hope the wait for the scan result isn’t too long and take care, Jayne x 

Hi Scared_Mummy. How are you getting on? Have you had any scan results yet?

Karen x

Hi Karen,

Thanks for asking, soon after my scans I got a phone call from a nurse to go see my consultant that day, obviously my heart sank as you can imagine. I met with her that day and she said there’s no evidence of any spread thank goodness. I’m on her list for surgery ASAP but there’s a slight delay at the moment. It’s open surgery with a possibility of stoma. I don’t think it’s all sank in yet, it’s very overwhelming I only had the colonoscopy 2 weeks ago and not processed everything yet. I’m petrified of open surgery but I know I have to have it xx