Topic: General info

I am new to all this, as you may have read. As I sit and type, my Mum is, at long last, having surgery. I will return to the hospital in a few hours, and just hope the op is a success.
A couple of things I wanted to ask......I read a couple of threads about people suffering from having fluid inside them after surgery. What's all that about? Can someone explain? Just wondering what to expect.
Also, I am interested to know all about follow up treatment, like chemo/radiotherapy. Now, I read on a few sites, that radiotherapy/chemotherapy, have no proven effect on this particular type of cancer. Yet I keep reading stuff on here about people having said treatments. Any comments on that?
My Mum has type 1 tumour I believe, and understand that it means that it confined, as far as they can tell, purely to the bile duct itself. The surgeon was most optimistic that he can get the tumour out...............I guess I'll know later today!
Also, reading on the net, it seems that EVEN if they can cut out the tumour, life expectancy is still fairly compromised, 1-5 years? Why is that? Is it because the tumours grow back/spread?
Sorry for the barrage of questions, any answers would be much appreciated.
By the way, I am in Greece! My Mum lives here, hence the operation is here, as she didn't want to come back to England, she's lived here 17 years! But it is really so different to UK etc.....hard to get info out of the docs, partly a language problem, as I don't speak Greek, but also, I get the impression, that people just let the docs get on with it, and don't ask much. Which is why I'm asking you lot!!!! My Mum spaeks Greek, but is essentially Greek in mentality now, and is really not concerned with details!! She just trusts and lets them get on with it!!

Re: General info

Kate,

Please keep us updated on your mom's condition in the hospital there.  We hope things go well.  Just a couple of thoughts or things we have been told.  The problem with surgery (and you are lucky that the disease seems well defined in your moms case) is that they can only cut out what they can see.

All of the surgeons that we consulted with said - it's what you can't see that will kill you.  Sometimes they call it seeding or other things, but this is how the tumor spreads to other organs.  The problem is that you can't see the seeds, that's why chemotherapy (or systemic treatment) is so important it is the only way to kill the seeds.  Now that being said it doesn't always work, but it works about 30-40% of the time and that's pretty good when you are working with something you can't even see.

I can't speak to the fluid in the belly after surgery/resection but perhaps someone else can help with that.

Re: General info

Kate-

They told me that my fluid build-up after the surgery is not uncommon.  My oncologist looked for it on my 3 week check-up after surgery.  It did cause some pain on the side of my body where the surgery was  - on my side, in my armpit.

They drained two liters of fluid from me in a procedure that was mostly painless until the end, and then it hurt like heck for a brief period of time.  They said the pain was from lung reinflating.

I think the disease is so deadly because it causes tumors in the liver which are hard to treat.  And I've been told, because there's so much blood that flows through the liver, it's easy to grow tumors there, which has been the case for me.

Hope this helps,
Caroline

Re: General info

kate,

i agree with caroline, fluid build up is v common post op - my dad had lots of problems with it post resection.  he had fluid in the pleural cavity (in the space around the lung) and needed a chest drain and aspiration on the first op, post op second time round he had alot of probs with the wound healing and the fluid was pouring out - in the end they gave him a vac pack whcich basically is attached to the wound site - it is a machine which my dad carried around with him which sucked the fluid out into removable cannisters.  They told us that the surgery involves alot of distrubance to the organs in the abdomen and fluid build up is a normal reaction to this - the prob with fluid build up is that it creates a warm moist atmosphere for bugs to grow - at the time my dad was taking very strong broad spectrum antibiotics.

hope this helps and that your mum makes a speedy recovery - is she having chemo post op?

jules

Re: General info

Hi everyone, thanks for your replies!!
Well, had a nail biting day yesterday!! She was in surgery for nearly 9 hours!! Longest day of my life I reckon!! Well, after about 5 1/2 hours, the surgeons came out to tell me they had successfully removed the tumour!! They said it was really hard work, but they reckon they were successful!! They then said they had to go and do the 2nd op!! WHAT??!! Apparently they had reconstruction work to do!! So I had to wait another 3 hours, before they came out to tell me they were done!! They said her condition was stable, and she was being transferred to the ICU. I wasn't allowed to see her yesterday. However, I went to the hospital this morning, and was allowed to see her for half an hour!! She is fine!! Hooked up to a myriad of machines, tubes and wires everywhere!! Bless her heart, she thought it was still operation day, ie:Tuesday!! She didn't realize how long she'd been in there!! Anyway, it was a little hard for her to talk, her mouth was really dry, as she's not allowed food or drink till tomorrow. But the nurses said she was doing just fine, and she seemed fine. WHAT A RELIEF.........although I am aware that it may well not be plain sailing at this point...we'll take each day as it comes. She should be back on her general ward again tomorrow.
As for follow up treatment, I guess I'll find out about all that in the next few days? I assume they'll have taken the tumour away to do tests etc on? So, I will just have to wait and see what they have to say.
Thanks for the info, at least I have an idea of what may happen!
Love to you all, and hope your Dad is OK Jules!

Re: General info

kate,

glad to hear the surgery went well.  Did the surgeon tell you if he got clear margins? - my dad did not have chemo post op initially as the surgeon did not reccommend it - i advise you to get on oncologists opinion on this - they are bound to conflict, my dad has suffered a recurrance 5 months post op - we really were hoping for longer - i urge you to go for chemo - i wish now that my dad had. 

wishing your mum a speedy recovery.  Best wishes, jules

Re: General info

Thanks for that info Jules! I will bear that in mind over the next few days, as hopefully we'll get some more info on that kind of stuff.
I haven't seen the surgeon since the op day, but Mum said that he said it was "a good clean job" or something similar, so hopefully that is what you mean!!
She came out of ICU today, and is back on the general ward. I have just nipped in here to update family and friends via email, and will now go to the hostel and collect some stuff, as I'm going to stay with her tonight. She's really suffering, they won't even allow her to drink water...she's only allowed to suck on water soaked cotton wool right now....which isn't much fun. And she is in alot of pain. Just before I left they gave her an injection for the pain, which started to work quite quickly. Then she went into a doze, so I slipped away to collect my stuff! Still covered in tubes etc etc. Well, what did we expect really??!!
Anyway Jules, I best go now. Thanks for your support!! Again, hope things are better for your Dad! x