Topic: My Fiance Patrick was diagnosed with Cholangiocarcinoma

The first time I felt something was wrong was when I noticed Patrick's eyes had a yellow color to them. I mentioned it to him, but we didn't take action at that time (maybe both of us were in denial that something more serious was going on). The next day he wasn't getting any better and I noticed his skin turing yellow, so after much thought and consideration I convinced Patrick to go to the ER to check it out. He was admitted almost immediately to the hospital, as they found a mass on his liver. After that it was just a lot of worry and waiting, with really no answers right away. They had to put a stent in his bile duct because it was blocked (causing the yellow color in his skin and eyes). They were going to put another one in, however they coudn't. Then we found out that it was indeed cancer, however they were still running tests to find out the type and stage. The good news was that it had not spread to any other organs, so we thought we had a good chance of fighting this. By the end of the week however, we met with the Oncologist who said it was called "cholangiocarcinoma," and along with the 6cm mass on his liver, they found two other places on his liver that it spread to which puts him in the stage 4 category. We were told that they could not operate, and would only be able to give him Chemotherapy. Even with Chemo, the doctor thought that Patrick has about 1 year.

In hearing this news we were left speechless and hopeless. We just couldn't believe (and still can't at times) that this is really happening. One of the most joyfull times in our lives of planning a wedding (for this Septemeber) and buying a new home, turned into an absolute nightmare that we couldn't wake up from.

After two opinions from doctors at two different hospitals that told us that Surgery was not an option, we went to the Mayo Clinic were we met with an amazing liver surgeon and oncologist. This was the first time we received a bit of hope. The surgeon said that surgery IS possible, if the cancer has not spread and if the tumor begins shrinking with Chemotherapy. We have decided to begin treatment at Mayo, and Patrick will begin Chemo on Tuesday if his billiruben count is low enough.

Patrick and I have a  game plan called hope. I have been reasearching like crazy and have come across some pretty amazing cancer survival stories and stratigies people have used to beat the odds when doctors told them they had no hope for survival. We beleive that this is something that Patrick can beat, with the right medical treatment, as well as using a holistic approach of an organic diet, supplements, exercise, rest, and most importantly faith. We are determined to fight and beat this disease.

Thank you for letting me share my story and I look forward to being apart of this amazing community!

Katheryn

Re: My Fiance Patrick was diagnosed with Cholangiocarcinoma

Amen Patrick and Katheryn... 

Standing in Faith right along side you!! NEVER Stop Believing!! Most the world says can't, God said FINISHED!!

Joe

Re: My Fiance Patrick was diagnosed with Cholangiocarcinoma

Hi Katheryn,

Welome to this site!! Sorry you had to find us. Can you tell us more about Patrick like his age, how long ago he was diagnosed, what kind of chemo he is on. Thanks. That will be helpful to a lot of people on here that can offer you advice. Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Fiance Patrick was diagnosed with Cholangiocarcinoma

Hi Katheryn,

Welcome to the site. I am sorry that you had to find us all and I am sorry also to hear about Patrick. But I am glad that you have joined us all here as I know that you will get a ton of support and help from everyone here. Thank you for sharing yours and Patrick's experiences with us all. It is heartbreaking to read.

That is good to hear that after hearing the news that you both did you started doing your research and seeking further opinions re sugery and everything else. The better informed you are the better decisions you will make when it come to everything to do with this disease. And we are all here to help if we can so please, if you have questions, any at all then ask away and we'll do what we can to help in answering them. We don't have all of the answers, but we'll do outr best to help.

That is good to hear that Patrick is now under the care of mayo clinic, he is in good hands there. And my fingers are crossed for Patrick that the chemo will start to shrink the tumour so that the surgery can be done as soon as possible. I also hope that the bili counts will be low enough so that he can start the chemo next week.

Hope is a good thing and please do not give up on that. It sounds like you have your fighting heads on and that is also very good to hear. Please know that we are all here for you. Let us know how everything goes for Patrick and come here as much as you want. We are here for you, we know how you feel and we care.

My best wishes to you and Patrick,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Fiance Patrick was diagnosed with Cholangiocarcinoma

Kathryn
I'd also like to welcome you to the CC family where you will find lots of support and advice from patients and caregivers who have taken this road before you.  Your story starts off as a tale of dis-belief, then despaiir and finally hope following the positive response from The Mayo.  As Gavin wrote, you have done all the rights things by not simply accepting the first opinion, but seeking out various opinions. 

Good luck and come back often with details of Patrick's treatment plan.

Gerry

Re: My Fiance Patrick was diagnosed with Cholangiocarcinoma

Dearest Katheryn & Patrick, welcome to our extraordinary family but sorry you had to find us. You already have the best tools for a good fight with your attitudes, hope and Mayo Clinic. You are doing all the right things and we will be your best cheerleaders! I promise you that once the chemo starts and you have a game plan the fright will turn to fight! Hur4r4ah for you with wasting no time to get to Mayo who are one of the BEST. By the way we do not listen to time frames, they don't mean a thing to us. We have Stage 4 members who have beat all odds. We have members who were told NO surgery over and over and guess what? They ended up with surgery. Please keep us updated as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Fiance Patrick was diagnosed with Cholangiocarcinoma

Katheryn...I would like to follow the others in welcoming you to our site. Your game plan is impressive
We are individuals fighting our own disease with the tools given.  Kudos to you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Fiance Patrick was diagnosed with Cholangiocarcinoma

Thank you for your warm welcome everyone! Your encouragement and support means so much!

Re: My Fiance Patrick was diagnosed with Cholangiocarcinoma

Dear Katheryn,
Hope is key, moments are precious. Enjoy each one. Follow your heart and keep positive. No one is time stamped with an expiration date, they gave my mom less than 1 year and she made is 19.5 months. Be strong. We are here for you.
Hugs,
Roni
ronidinkes@yahoo.com

Re: My Fiance Patrick was diagnosed with Cholangiocarcinoma

Welcome to the site. Mayo is a great center to receive treatment. Best of luck and keep us posted.

Best wishes,
Susie