Dad diagnosed as inoperable – should we try to get a second opinion?
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Thanks to you for your replies. I really appreciate your kind thoughts and suggestions. I really hope that Mum and Dad will decide to push and ask some more questions about his other options, but I can’t force them to do this and can only do it for them if they want me to help. It’s a difficult situation.
GAvin – yes, they have offered chemo, but my understanding is that chemo is not hugely effective against CC. Hopefully it’s better than nothing at all but I guess that depends how ill it makes him feel.
Anyway, as you all say we have to keep positive and make the most of the time that we have, and we’ll surely try to do that.
K
Hello MSKSQUARED and welcome to our wonderful family. You have already been given some great advise here I would just like to add that for Cyber Knife the tumor must be under 7cm and not metastsized. My only other suggestion is to get another opinion if you can. We are strong believers in multiple opinions until it all feels right to you. Best of luck and please keep us posted.
Hi Mark,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your dad, but you have come to the right place here as you will get a ton of support from all of us. And please feel free to ask any questions and we will do what we can to help in answering them.
I too am from Scotland and live in Dundee. My dad was diagnosed back in 2008 at Ninewells here in Dundee with inoperable CC. He was treated with PDT in Ninewells but I am not sure if they do that procedure here now. His CC was deemed inoperable as it was too close to the portal artery. I can’t really add anything to what Marion has said to you about why your dad may not qualify for a resection.
As far as getting a second opinion for your dad goes, how does he feel about getting one? It may be the case as you say that your dad might not want to go througth the stress and waiting etc involved in getting one. If your dad did want to go down that road then I think your dads GP or specialist from the hospital would be able to help there, or you could try contacting someone yourself. My dad never sought a second opinion so I have no personal experience to share here.
Yes Cyberknife is available here in the UK but it is not widely used, and as far as I am aware there are only a handfull of centres in the UK that offer cyberknife, all of them based in London. Out of the few centres in London that do this, most of them are private clinics and I believe that the cost of the procedure is around
Hello msksquared and welcome to our site. I am sorry for you having to find us but am happy to see you here.
It is my opinion for diagnoses of Cholangiocarcinoma to warrant the opinion of several specialists. This is where our UK members will your best resource.
Additionally this link established by our members may be of help to you:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126The AMMF foundation in the UK also provides a listing of specialists.
http://www.ammf.org.uk/cholangiocarcinoma/specialists/The liver must have enough remaining healthy tissue for normal function after the diseased parts are removed. With few exceptions have we seen a resection in excess of 70%. Tumors located near important blood vessels will exclude resection of the diseased portion. This may very well be the explanation as to why your Dad does not qualify for a resection.
Cyberknife is one of several stereotactic devices used for the treatment of tumors. Other devices used are linear accelerators, the gamma knife, computers and laser beams. Depending on the institution one or the other devices may be used.
Please, stay hopeful and optimistic as responses to treatment are individually based. We have numerous success stories on this site and being that your Dad is otherwise healthy he may very well prove to be just that.
All my best wishes,
MarionHello.
My Dad – 72 and otherwise very fit – had his CC diagnosed as inoperable by the team at Edinburgh Royal yesterday.
I am having trouble understanding the exact reasons why. My mum said the doctors told them it’s because the tumour is located in both branches of the ducts and they’d have to remove too much of the liver to be viable. But I thought that a lot of liver can be removed and still be viable. The doctor also didn’t mention the liver transplant option, for example, and I wonder if they simply don’t make all possible efforts for older patients (although I don’t think 72 is old).
I know that the team at Edinburgh is supposed to be very good, one of the best in the UK, so I wonder whether we should simply accept the diagnosis, or whether we should ask about a second opinion? I don’t want my dad to go through additional waiting and stress – getting to this point has already taken two months.
I don’t actually know how you get a second opinion in the UK, but I am sure that some of the UK patients out there can help advise me on this.
I also see mention of something called ‘cyberknife’ on here. Is it something that surgeons in the UK use?
Thanks for any advice, and wishing everyone on here the best.
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