Hi ste62 just reading your posts I had PET scans when they were looking at liver so you may still have these to come, was also told the liver was my priority even though they had graded the bowel cancer (they told me mine was a grade 1 I think it was following the colonoscopy) I originally presumed it must be grade 4 to have spread but I think it’s more on the type of tumour rather than the grade as I had multiple mets in the liver from the primary in my bowel but these were all grade 1 when they took out and tested. 
we are all different though and our treatments do appear to be different it’s good they are shrinking primary first mine was small which I think is why I did not have chemo as it was easy to remove without. 
it’s not helpful but sadly a lot of waiting is involved but I wish you speedy treatment and a positive outcome xx 

wendy

Hello, Anne-Marie lives quite close to me and we’ve been chatting a lot about our experiences. 

I have never been told a stage either. I have a friend going through a similar journey to us who has same oncologist to me and he was told not to think about stages, it is really just for them to use in terms of what they are dealing with treatment plan wise, so I’ve never asked the question, I just know it would be classed as 4 because I’ve confirmed mets. 

I think with me they did the pet because there were areas of concern across both lobes and they wanted to be sure it hadn’t gone elsewhere. The areas of concern had been flagged on the first CT scan I had of the abdomen and pelvis.

The plan always was to do chemo first even after  they had confirmed the bowel and liver were operable. true oncologist said that although the pet confirmed no further spread it couldn’t pick up single cancer cells so best to blast with chemo first. She also didn’t want a delay so didn’t recommend I have the small tumour in the bowel operated on first incase there were any complications that would then delay the chemo starting. So much the same info as you.  

Thanks Wendy that’s really useful information x

Hello all

I hope you are all doing OK. I have my 2nd scan tomorrow (MRI, I think), and apparently my biopsies and ct scan results are back, but I don't know any details yet. I hope/think this means the MDT will dicuss my case next Friday. 

I think that means they'll have a plan/options/more detailed diagnosis soon?

Much as I feel 'ok' overall, and I certainly hate the waiting, I'm terrified to hear what exactly they've found, whether it's spread, and how hard the treatment will be.

So long as they can treat and cure (which was the initial comments of the surgeon who did the colonoscopy, and what I'm clinging to), I guess I have to accept anything else.

How is everyone else getting on with news and treatment?

Hi wishing you the best news looks like they are doing quickly so that’s a bonus x 

I started driving this week 8 weeks after surgery still in some pain but things are getting better, 

take care 

Wendy 

Hi James 

it’s probably the worst bit when you have everything and are just waiting for final discussion and plan from the consultant.

The MRI is the final bit and then you should get a date.

I have appointment next Friday to go through my chemo plan but it’s been another two weeks waiting.

looking at it overall it seems to be about two months with most and then they are on treatment or operation.

I just want to get started and I think once you do have the plan it will ease a lot of anxiety.

I bit unsure on Chemo and what this has been like for some people, so if anyone can share there experience it would be good 

In the meantime James just stay as positive as you can I go for walks now about an hour at a time just helps me clear my mind.

All the best 

Thank you, Ste62 

How has your appointment gone today?

I'm told the MDT should be discussing me today as they have my biopsies and 2 scan results.

The cancer nurse offered to call me later today with an update post- meeting.

I know lots of people say this waiting is the hardest part and it gets easier, mentally, once you have a plan. But I'm terrified what they'll tell me. Wish me luck.

Hi James ,

went for appointment and was told stage 4 but curable with chemotherapy.

still a bit of a shock as my consultant did not say anything about grade , had another doctor for this appointment who I never seen before.

basically I start chemo with having a  line fitted then 6 hours of chemo at hospital then a pump attached with slow release chemo over 48 hrs.

was also told lots of side effects and I would lose all my hair.

chemo for 3 months then re scan hopefully some shrinkage of tumour and then another 3months of chemo if req.

if the chemo works they will then cut it out and reconnect everything.

so hopefully chemo will do its job.

its been a wild 2months of ups and downs but they have said curable so I got to go with that.

hopefully yours will be ok I had a friend at work who had exact same last year but tumour had not spread so he just had op to cut it out and reconnect with no issues or chemo.

wishing you the best if you had everything should not be long for your meeting.

I have a look at the chemo threads but it does not sound great 

I keep you informed 

Hi Ste

Thanks for sharing. Great news that they're confirming it's curable.

Sounds like quite an intense amount of chemo (i don't know too much about that yet). I hope you have people around you for support, and we are all here for you. 

I hope they're able to firm up plans soon for you. Its all quite daunting, isn't it? But we are so fortunate they have treatments and cures now. I'm so inspired by people's stories on here and elsewhere

I posted in another thread on mine: they had said it hasn't spread to other organs (great). They want a PET scan next to check a couple of lymphs and decide if a bit of chemo or straight to surgery. I'm fearful, but taking the win that it likely hasnt spread for me, and that they've said they can ultimately sort it out.

Take care. Thinking of you.