Mum - Stage 3 Diagnosis (Awaiting further CT)

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I feel like I'm living in a nightmare so I'm not sure how my poor Mum feels but I'm hoping I'll be able to get some more information and maybe support from those going through the same horrific situation.

On the 29th August my Mum went into A&E with awful pain, no other symptoms, they said it was gallstones/gallbladder infection but had seen something on the scan. Fast forward to the Monday when they were operating they saw a tumour and rang Leeds St James for advice who advised to close her back up.

The Thursday she had an MRI then we were back to wait for Leeds to ring us. Fast forward another 2 weeks for a PET scan. Another 2 weeks to confirm they'd had a meeting to discuss her case. And then now a meeting with 2 specialist surgeons and a Macmillan nurse.

They confirmed stage 3 and that it was large, it was on the wall of the liver and in other areas around (possibly bile duct/lymph nodes) the meeting still feels like a complete mind screw so I feel as though I've missed some bits and bobs.

Apparently none of the scans have given them the clearest picture of what is going on apparently having them so soon after surgery can cause problems and show shadow's etc. where it could be cancer or inflammation. so now have booked her in for another CT scan this Friday. Again an even longer wait and then another 2 weeks for more information on the plan.

From my research it's aggressive and the mortality is low as its such a rare cancer. Should she be waiting this long. Are they making sure via another CT because it may not be operable. In that case is it just living with it and continuing with other treatment options? I have no clue.

From also reading online stage 3 is saying its not curable but it's manageable, is that correct?

I have so many questions and no where to go for answers, I was going to ring my Mum's Macmillan nurse but I didn't want to bombard her straight away.

My Mum has also been adamant she doesn't want to know much other than when the hell can they get it out of her and how soon.

Until you're in this situation you can never really understand the pain and torment. Waiting weeks upon weeks. I want to be a supportive daughter but it's so hard when your emotions are so strong and come in waves.

So sorry for going on I'm just so scared, she's all I've got!

Smiffy_69 5 months ago

Hi EllieClaire,

My name is Colette and I just wanted to reach out. I just saw your post. I'm so sorry you're mum is going through the torturous wait for scan results and tests and MDT meetings and meeting specialists and nurses... It's very overwhelming but take a big breath, (easy for me to say I know). I'm this total stranger commenting on your post and telling you to breathe.

I only say this from a place of experience, I have stage 4 incurable gallbladder cancer. Mine was found in 2016 aged 46, (I am now 55). Mine spread from the gallbladder to different places in my body, to my bowel, to my peritoneal cavity, to my abdomen, even next to my actual bladder, as well as the liver and gallbladder bed but I'm still alive. Yes the statistics are dismal and quite frankly terrifying, but every single person with cancer will tell you each of our bodies are different and therefore cancer acts and is also different in every single body. Don't get freaked out by statistics.

My advice right now is to make that call to your mums specialist, you won't be bothering them, you won't be a nuisance, don't feel like that at all, that is what they are there for because the information overload is way too much and i promise most people miss a lot of what is said, trust me even now after nearly 9 years and countless surgeries and chemotherapies I miss half of what they tell me.

Try and breakdown each day into manageable bites if you can, it's a little less daunting.

You're not alone, these community pages are usually a great source of comfort and more importantly knowledge.

Take care and reach out anytime

Colette

cgr 5 months ago

Hi EllieClaire,

I'm going through something similar with my partner at the moment - one thing I can agree is that it's all very scary, especially the unknowns!! We also went through stages where we were just waiting for results and it's torture. Getting a diagnosis and a plan in place has helped, but the not knowing of how the treatment will work is still difficult to process some days. All I can say is try to remain hopeful, and like Colette says, take each day as it comes in manageable bits - it really does help.

Macmillan are there to help you - they're really lovely and they won't mind you getting in touch at all!

Cadi x

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