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Beating Bowel Cancer Community

Stage 4 bowel cancer

Polly 1

Lung/liver op???? Still waiting.....

....not sure where we are now really.

The liver team (Birmingham) said today that they now need a MRI to see if they can find the liver lesion (cant see it on 31 Jan CT).

The lung team (Stoke) need an up to date lung CT to see if they can find their nodule (no lung CT since November). We have been waiting two weeks for a lung CT scan after Bham only did abdomen/pelvis on 31 Jan.

If they find it the liver team wont operate unless the lung team say they can/dont need to operate.

The picc line is out and folfiri/cetuximab has stopped after 11 treatments (it will be 3 weeks on Wednesday since the last one)

If no operations at all the Oncologist said to keep Cetuximab funding C needs to be back on it after 6 weeks which is 3 weeks this Wednesday. Also he says he needs plenty of notice to order the chemo/Cetuximab in and fit him in.

Time is ticking by. We naively thought at least we would have a peaceful break of 6 weeks between chemo and liver op. We are spending our days near the phone either chasing or waiting for a call back. It is very stressful. It sounds like good news that they cant see anything on the CT scans but as our Oncologist is always saying 'just because you cant see it dosnt mean its not there'.

DianeS

So sorry when I read your update @Polly 1 you must be so stressed with everything that is going on. It is good news that nothing can be seen on the scans, but I do understand what your oncologist has said, as mine says exactly the same, and he is alternating between PET scans and CT scans. So hope this gets sorted out soon and your waiting is over. Fingers crossed for you both love D :x::x::x:

mem

This a so frustrating for you both @Polly 1. I am really not surprised it is causing you stress. It is so sad that you have been given a 'funding deadline' in the first place. Is there any 'leniency' for people in your position?
I think if it were me, I would have in mind to just go back on the chemo in 3wks. How realistic is it to get those results and a conclusive plan in 3 wks? If they are struggling to see lesions etc on the scans (which is great news) what are the chances of operations? Can RFA be done whilst on chemo if needs be? :x::x:
Sending love to you both :x::x:

Alan C

@Polly 1 as if things aren't stressful enough, you've got so many plates spinning you're not able to enjoy the chemo break. I hope things come together and you get answers from the hospitals to take things forward.

Keeping my fingers crossed for you both for a good outcome. :)

Baxter2

Oh @Polly 1, I can only imagine the huge stress and frustration you feel with all of this! It sounds like an awful situation to be in where you must feel that you just can’t win! As @mem has just commented, it may be worth trying to get the chemo restarted asap so the Cetuximab funding isn’t lost. It doesn’t sound like they are all ready to operate within the next 3 weeks especially as the scans are not yet done and reported. The good news has to be that the lesions are hard to find and measure which has to be a good thing? I really hope you get this all sorted out as it sounds so stressful indeed!

Sending all my very best wishes to you both!

K????❤️❤️

Mandy

Hope things improve and you get some swift action.Sending hugs :x::x:

Polly 1

Thanks @DianeS @mem @Baxter2 @Alan C @Mandy

We think you are right about chemo - we are going to ring the Oncologist's secretary tomorrow so we can let him know what's going on. I dont know how quickly he could arrange to get the picc line back in and folfiri/cetuximab restarted.

As you say they are unlikely to get the scan report done in time now are they? We havnt even got a date for the scans themselves yet. Both hospitals were supposed to ring back this afternoon with scan dates but they didnt.

At the moment C is still booked in for the Birmingham liver op on 5th March but this is dependent on the liver MRI result and the lung CT/op before then. Apparantly rather than our local hospital they now want us to travel to Stoke for the lung CT to try and get it done quicker so that sounds hopeful although annoying as it will mean another day travelling and waiting - not quite what we had in mind for the chemo break .

Part of us is very very pleased and happy about the liver CT result but if the lesion is too small to operate I presume we have to wait until it grows again??? Has anyone ever had a complete and permanent response from chemo?

Trinity

All the best @Polly 1 & C, seems very stressful, thinking of you both & take care :x::x:

Polly 1

Thank you @Trinity although we are stressed I realise its absolutely nothing really in the grand scheme of things and compared to the stress you and others are under.

I was hesitant to post... but just writing it down has got it straight in my mind and the 'expert' replies here help when you cant really talk it over with family etc.

C is very quiet tonight. He feels lost I think. He likes a plan and everything is up in the air. He wants to feel happy about the liver CT but hesitates as anything could show up on the liver MRI or lung CT and he will be back to square one. I dont think he will sleep very well tonight.

Trinity

Yeah I know what you mean about a plan ! I think we all feel more in control when there’s a plan in place, always post @Polly 1 that’s what we’re all here for to support each other in times of worry, and to enjoy good news when it comes around for people

Lots of love :x::x:

Polly 1

Thanks @Trinity :x::x:

mem

I'm really wishing this stressful period over for you both @Polly 1, so you can both move on with your lives rather than constantly toing, froing, ringing and waiting! You should never feel hesitant to post your feelings, this is relative to you and C, and I think we all very much feel your frustrations and the understandable stress it is causing you both.
I do hope you and C managed to get some sleep last night and I hope you hear today about the scan dates.
We are here for you both xx.