intro: IHCC with PSC
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Dear Julie,
Welcome. I’m sorry anyone has to be diagnosed with CC, but doubly lousy when you are so young. I’m glad you realize that there are some happy ending stories even with this disease and I’m hoping that you’ll be one of them!
Take care,
CatherineJulie….a warm welcome from me as well. Of course you are too young to die; despite the diagnoses you are here to live your life to the fullest. You are young, otherwise healthy and have the will and determination to take on this cancer.
Regarding liver transplantation: a few of our members were able to receive a transplant, but as far as I remember, all are hilar cholangiocarcinoma patients. .
Josh, who was diagnosed with PSC and cholangiocarcinoma a few years back has a blog on our site. It can be accessed it by using this link: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4886
I agree with Debbie in that the cholangiocarcinoma diagnoses requires at least one second opinion from a physician/center treating a high volume of bile duct cancer patients. If you so choose to do so and based on your location, Princess Margaret Cancer Center would be the right place for you.Hugs,
MarionHi Julie,
Welcome to our amazing group of caring people from around the world. I’m so sorry that you have been dealing with your health issues for some time, but glad you joined us, as this group is comprised of many wonderfully caring and supportive people with a diverse range of cc experience. We are here to assist in guiding you through these rough waters.
You didn’t mention where you are being treated, but I would suggest that at a minimum, you work with a top center with much cc experience. Even if your current provider is in that category. I would suggest you get a second opinion from another top center. You mention reading of a number of patients defying the odds. I think some of that may be due to “lucky” tumor biology, but I would venture to guess that the majority of successful patients are those that refuse to accept their doctor’s palliative approach and they seek expert opinions until they find the one willing to treat aggressively. It can seem overwhelming, but as you know, this is your life and you have much to fight and live for. We are here to support you. All the best to you.
Debbie
Hello, Julia and WELCOME to the best place to be for CC support, but sorry you had to find us. Wow! Talk about that roller coaster ride you sure did get a bunch of tickets. I am sending you the best vibes and juju. I love your attitude and it will get you far not only in CC but what a role model you are for your fabulous munchkins. I cannot help with your questions about PSC and IHCC but wanted to welcome you and I know others will be along to answer the above. Hang in and hang on and please do keep us updated as we truly care.
Hi Everyone,
This is my first post. I was diagnosed with PSC in 1999, waited on transplant list 6 years, got sent home for looking “too good” for transplant 3 times so took time to get married, have 2 lovely kids etc. Then 2015 back on list due to more pain, weight loss, jaundice etc….back on transplant list getting really sick now but stupid MELD score system doesn’t work well for PSC patients, so I’m stuck waiting and… scan this march showed large tumour in lower right liver segment. Due to PSC and size of tumour and intrahepatic nature I was told palliative measures only, but they’d do sterio radiation and keep fingers crossed. Now I’m waiting on results, feeling really really good, more healthy than I’ve been in over a year and hopeful that local surgeon will consider following with liver transplant, assuming no spread.
Does anyone else have experience with PSC and IHCC with transplant? I’m not sure if they’re going to do chemo or not… since my liver enzyme numbers are down a bit they are considering it now, particularly with bilirubin under 100.
I’ve gone from being told 6 – 12 month estimated life to maybe transplant… but high likelihood of recurrence, it’s a rollercoaster!!!
I’m 38 years old, mom of two living in Ontario Canada. I can’t get over how many people are being told they’re nothing to be done, but yet you hear about cases where they do radiation, chemo etc. and people are living years and years cancer free. All I know is that I’ve got to keep my doctors seeing me as treatable right to the end, there are too many happy ending stories out there about people and their doctors who keep pushing the boundaries and I’m too young to die!
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