August 28, 2009 at 10:53 am #30957devoncatParticipant
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.
KrisAugust 28, 2009 at 10:10 am #2632lalupesParticipant
My sister went into hospital for what they thought was a violent reaction to penicillin. 4 weeks later they still haven’t given a proper diagnosis but they’ve found a “mass” in her bile ducts & are talking about CC. They’ve said, even if it isn’t CC, her ducts & portal vein are in a complete mess, although her liver is healthy.
Her hospital is supposed to be the best in the UK for bile ducts etc but as communicators they absolutely stink!! One doctor came to her bed on Monday night & casually said “it’s inoperable” & then came back on Tuesday morning & said they’d “had another think & maybe it isn’t inoperable after all”. They won’t tell the family anything because of the Data Protection Act, so she had to carry that alone until I went in on Tuesday (‘cos she wouldn’t tell me on the phone), by which time everything had changed again.
They did another MRI/MRC scan on Wednesday & said they’d be having a meeting to discuss the results next Monday – but next Monday is a Bank Holiday in England, so now they’ve said they won’t be having their meeting until Wednesday.
It’s tearing me apart. One doctor tells her one thing & another tells her something else. The 1st doctor says not to listen to the 2nd doctor & my head’s spinning – God knows what it’s doing to my sister’s head, although she seems to be coping extraordinarily well. Better than I am, anyway.
I don’t want to think about if she doesn’t get well; I’m trying to live in the present & stop panicking about the future but it’s so, so hard.
I’m glad I found you. Thanks for listening – any guidance you can give me will be so much appreciated.
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