My mother, 76 yo
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Hi there,
Welcome to the site. Sorry to hear about your mum but glad that you have joined in with us here as the support and help you will get will I know be excellent. I would just like to echo Marion’s point about seeking further opinions for your mum if you can.
And please let us know what the onc says and recommends etc and I am pretty certain that what ever treatment they or anyone else recommends for your mum there will be someone here who has or is going through that treatment. Well either they or there loved ones will. Looking forward to hearing more from you.
My best to you and your mum,
Gavin
604son,
I’m not in the industry but got a crash course with my mother. What I would say is, I trust their opinions knowing full well that those opinions are based on their skill level, experience, and confidence. Their opinions need to be filtered through those caveats.
I don’t believe that its binary, where it’s either a 1 or 0, and if one person says its a 1 then everyone else goes ‘yep, its a 1’. Especially with surgeons. No doctor is going to say, ‘that tumor is inoperable because I don’t have the experience, skill, or confidence to do it.’ But it might be the truth nonetheless.
To Marion’s point, you need to talk to specialists. Good luck.
Joe
604son…..welcome to our special group. Already you are quite familiar with this cancer, but I would like to emphasize the importance of a second, professional opinion from a physician treating a high volume of cholangiocarcinoma patients. Being that you are on the West Coast and somewhat close to Calgary University, you may want to reach out to Dr. Oliver Bathe. He has vast experience with this cancer not only as a surgeon, but as an oncologist as well.
You are correct in valuing the collective wisdom of our members. It’s important to learn about this cancer and where best can we obtain this information then from those experiencing the disease. The US in particular is encouraging patients and caregivers to become actively involved in all aspect of their healthcare. This includes the NCI Office of Advocacy Relations, FDA and others government and non-government institutions.
Please know that this is a difficult disease, but given the current, various treatment option, unlike the previous years, many patients outlive their original prognosis by months or even years.
I am sure for others to chime in and welcome you to our site.
Hugs,
MarionWe found out this past week my mom has multifocal intrahepatic cholangiocarcinoma. I wasn’t there beside her when she was told her liver biopsy results. From what I gather, it’s inoperable because the tumor involves the hepatic portal vein.
She’s awaiting consultation with the oncologists — which is likely to determine whether she’s a candidate for chemotherapy.
I’m in the health profession myself, and although I’ve had many family members who’ve been terminally ill, this is the first time I’ve felt the need to really join a community like this. Reading some of the other people’s posts have given me a very slim bit of hope — not for a cure, but perhaps for a longer and relatively painless survival beyond the often quoted time of 6 months.
I’m from Canada, and it’s always been my impression (from working in the field) that doctors here are very limited in terms of what they’re willing to do. Partly it’s due to a lack of funding. I also think they’re less inclined to do so for fear of regulatory policing.
Overall, I’m confident in their opinion, but I’m super interested to hear what the community here has to say. I’ve learned, over the years, that sometimes the best “experts” are patients who’ve taken an interest in their own health.
Thank you all for reading, and I wish you all the best of health.
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