My lovely sister

Lalupes,
Welcome to the site. We are a great bunch of people and are very supportive. You will probably find that we become your second family as you face this cancer.

The difference in opinion is something that happens regularly. If the portel vein is involved, it is usually a no-go on surgery. That said, a couple of our members have had surgery even though there was portal vein involvment, but it required having a heart surgeon and liver surgeon work in conjunction and finding agreeing doctors could be difficult.

This is a very confiusing disease, and to be frank, in a country the size of the UK, a cc specialist still will not see a large amount of patients. I have the same problem in Sweden. We are a small group. I had my original surgery in Edinburgh and loved my surgeon, Prof. Garden. I know that here in Sweden, I can request my records be forwarded to several hospitals..kind of like shopping around for a willing surgeon. Perhaps you could do that too? Some doctors are more daring and more willing to work with other specialists.

We have the same data protection laws going on,so my husband (luckily a lawyer) designed a document for me to sign that allowed him to do and find out everything for me…sort of like power of attorney in the US. This has been very helpful, not only in letting him get information,but it also allows him to do my banking when I am in the hospital and pick up my medicines. You might want to look into something similar.

And dont worry about the panicking. I do it all the time. The truth is this is a very scary disease. The outlook isnt good, BUT anything is possible. We had one member, Jeff, who survived with this disease for almost 10 years. I think of that as a challenge. I can do it too and who knows what is around the corner? Although I would love for my cancer to go into remission or have it surgically removed, it most likely wont. Instead, I think the way to approach this disease is to hang on. The answers and cure isnt here yet, but it might be in 5 years. I know that I am “terminal” now, but that doesnt mean I will be later. It is that hope that keeps me going. The only thing we know about the future is that we dont know about the future.

We have some current UK members that I am sure will chime in soon. But to get you started, you may want to do an author search for Gavin. His dad has cc and underwent pdt therapy and has had pretty good results. You also might want to ask about cyberknife radiation. It is new in the UK (I think there is only one machine in the country), so your sisters doctor might not be familiar with it.

Kris