Stage 4 bowel cancer

Polly 1

Hoping for liver and lung ops now

We still havnt heard that Stoke have agreed the lung met is resectable but yesterday in the post (1st class special delivery before 1pm) we received oral contrast for a Birmingham liver CT scan next week so thought at least things are moving.

This morning online I note pre-op assessment & anaesthetist appointments at Birmingham for 9th February and liver op 'offer' appointment 4 March 6pm.

So I think hubby needs to make a few calls this morning to find out what's happening!!

Hopefully it means Stoke are happy that the lung met will eventually be done and maybe the last folfiri/cetuximab due 7 Feb should be cancelled!!

He had chemo number 11 Wednesday this week so its about 5.5 weeks to the possible liver op date 4 March so need to check that too as I think they said 6 weeks minimum, hopefully a few days dont make a difference.

Being stuck in the middle of 3 hospitals is difficult. We asked at the chemo hospital on Wednesday if they had heard anything further from the other two hospitals about what's happening and they said no. We rang Birmingham on Tuesday to ask if he should still have chemo at our local hospital this week and they said yes so hopefully all will be OK.

Wouldnt it be great if someone could ring a patient and just explain what they should do and what is going on? I think the phone will be busy at 9am when hubby starts ringing round!

Polly 1

Thanks @mem @Baxter2 well it was a busy morning but we managed it - just. We sat down in the lung clinic dead on 10am.

The Oncologist didnt know any more than we did. He pointed out if C stops chemo now he can never have Cetuximab again so to make very sure the liver op is going ahead on 5th March otherwise if delayed/postponed to get in touch to have another couple of treatments while we wait. I suppose if they say definately no to surgery we will need it.

As I pointed out that would mean that it would be another 6 weeks after any delay before he could have a liver op. Vicious circle isnt it. Knowing @Seashells has had a few liver resection cancellations at Birmingham as well dosnt help.

Anyway we decided to leave the picc line in until after we had seen the lung surgeon. Surely he would have a plan of action.....er no. He asked if a CT scan had been done by the Oncologist - no but we had a CT with contrast at Birmingham yesterday for their liver team. Pelvis and abdomen only not thorax. "Oh no - why do they do that! Well you will have to have another emergency CT now for the lung"

....what did I say yesterday????

What he did do was look at the CT scan from November and couldnt even see the lung met on that. The Nov CT was done after 5 x Folfiri/Cetux - well he was still attached to the pump from no 6 so not counting that - and he has had 11 now. So fingers crossed its been 'melted' in the words of the lung surgeon.

If it is still there and suitable position etc he suggests ablation if possible although this would apparantly be done at a 5th hospital, one we havnt been to before.

So now we are waiting for the lung CT appointment then the results. Hopefully still OK and no others appear otherwise they wont do the liver op. He said a lung op dosnt need a minimum break from chemo so they could possibly fit it in before the liver op.

I dont know much about ablation. How long does the procedure take and what does it involve, do you have to stay overnight or a few days? How long until you can drive afterwards? etc

The lung surgeon was very positive. The oncologist on the other hand wasnt. "You do understand the chemo is palliative and as the cancer has already come back once it will come back again". "Yes". "So take that into account in your decision."

Very helpful

Daffodil

Good grief @Polly 1 , talk about complicated!
Good luck with all your deliberations. Love :x::x:

mem

Blooming eck a 5th hospital @Polly 1! It is so frustrating they didn't do the 'full' scan at the time. It would have saved you both yet another trip. This happens to me on occasions too and I still don't fully understand why? You're in the blooming machine anyway!
If all goes to plan RFA is a straightforward procedure in comparison to what C has already experienced. He could be home after a couple of days. He may feel a little bruised and tired, but this does get better in a reasonable time. Like every procedure, there are risks and complications when it comes to ablation, I did suffer from a pneumothorax on my first ablation and had chest drain for 3 weeks. However, my second was a lot more straightforward. I was told by my radiologist, the more nodules that need to be ablated the higher the risk of a pneumothorax. I suppose you would have to be guided by your radiologist (If you need to see one that is!) as you both have a lot more to consider than I did.
I personally do think RFA is a positive procedure, I just hope C won't need it in the first place and there has been some melting going on?? :x::x:

Clancy

Hi@Polly 1, really annoying when they don't pull together. I am sure it is cost, but it's false economy when you then have to attend for thorax CT. I am under 3 separate hospitals and it took 2 MDT none starter meetings for my oncologist to start jumping up and down. I suggested if I could have all my scans at the Christie and they said yes, amazed. I was mentally becoming Trip Advisor in my head weighing up the pluses and shortcomings of scan organisation. Good luck, you have 5 hospitals to deal with.:x::x:

Polly 1

@Clancy C is thinking of doing an I-spy book of hospitals, what you can see/do in each! Shows his age I think

Polly 1

Thanks for the info about RFA @mem fingers crossed they cant see anything

Mandy

All sounds very positive, fingers crossed you manage to get everything coordinated without too much hassle.:x::x:

Polly 1

Reply to another post

Oh thank you for thinking of us @Swan

Still got to have urgent lung ct (hopefully this week) and see the Stoke lung surgeon again to check what he needs to do before the estimated liver op date of 5th March.

Had liver CT at Birmingham last week and they said they may have the results tomorrow if we ring. The liver op will not go ahead if they wont do anything with the lung (unless nothing to do) so all up in the air really.

In the meantime picc line coming out tomorrow as no more chemo before the liver op. No more Cetuximab once its been stopped 6 weeks. If no op we now have 5 more weeks until we have to go back on cetuximab/folfiri so picc line would need to go back in.

I dont like all the unknowns. I like a plan.

Polly 1

Thanks @Mandy yes fingers crossed :x:

Swan

Yes such a lot of unknowns @Polly 1, very hard to live with. And all the different hospitals sound exhausting. It does sound like are being very thorough so that's good. Hopefully you will be a be able to make the most of being PICC line free and the chemo break. I do keep up to date with your posts but don't often comment, but I'm often thinking of you both. :x::x:

Polly 1

Thank you @Swan :x::x::x::x::x::x:

angepange

Thinking of you @Polly 1 . It’s a right palava by the sound of things. You must be frustrated and exhausted. Lots of love. Angie :x::x:

Polly 1

Just back from the chemo unit. They took C's PICC line out now chemo is stopped in readiness for the possible operations.
When we saw the Oncologist last week I asked if C could have one more blood test before the line came out in case his Magnesium levels were still low. Good job I did as it was still slightly low so they gave him a one hour Magnesium drip first.
From now on now the chemo has stopped they say just food should do the trick (lots of nuts, seeds, etc).

Trinity

Thinking of you both @Polly 1 sending love :x:

Seashells

Hi @Polly 1 wow, I thought my life was complicated! Hopefully both Birmingham and Stoke will have cleared their backlog soon and C's treatments run smoothly. My mum was in Stoke for her breast cancer a couple of years ago so I've spent many hours there. Parking was a bit of a nightmare as I recall.
Keep us posted :x:

DianeS

Hi @Polly 1 just caught up on your posts, you are both really going through it at the mo, so hope all goes well with the operations. Thinking of you both and sending love and positivity D :x::x::x::x::x:

Clancy

Hope all goes well @Polly 1, sending hugs.:x::x:

Polly 1

Thanks everyone. C rang Birmingham this morning but they havnt got the liver CT results yet.

They rang us back late afternoon to ask if he has had the lung CT yet and to let them know as soon as he's had it so they can urgently access it online. At our local hospital one of the scanners has broken down and apparantly 'urgent' means within 2 weeks so not holding our breath!

I have been to see the lady on the scan desk pleading our case and explaining that we are available every day at short notice and only live a mile away so fingers crossed for a cancellation - but not Friday of course as we are back at Birmingham for pre-op assessment. Of course we have already 'guessed' for which day the appointment will come through..... ?

mem

Hi, @Polly 1. Not to be wishing yet another hospital on you both; I was just wondering if it would be possible to have C's scan done at another hospital if needs be? I've had to go elsewhere before today and as you know the scan info can be emailed.
Hopefully, there will not be a need ?? just thought I would mention just in case :x::x::x:

Polly 1

Thanks very much for thinking of that @mem x I think C needs to get on with his I-spy book of hospitals starting with how many (working) scanners are at each one!

The hospital where he goes for chemo is in the same trust so although we are booked at the local one the lady I spoke to said as it was 'urgent' they would contact us if a free appointment came at the other hospital as well.

If all else fails if Birmingham need to know before maybe they could fit us in on Friday while we are there for pre-op tests etc. ??? Yes I know ... no chance

The liver op hospital is the same one that @Seashells is booked into so I am wondering if they dont get a lung CT scan to look at soon they may 'bump' him to a later op date anyway as they are short of HDU beds.

All this would have been avoided if Birmingham had scanned the thorax as well as the abdomen and pelvis last Wednesday. I wish I had made a fuss about it now but I just presumed they all knew what they were doing.