1 (edited by aberdeen Sat, 14 Mar 2009 22:50:16)

Topic: My father has cholangiocarcinoma

Hi All,
I never ever thought I'd have to say "my dad has cancer".  In my family, we have heart problems.  Not cancer.  This is my first experience with cancer...

At the end of January my Dad, who is 58, had some routine blood work done and his liver enzymes were "off".  A few days later they repeated the blood work and did a sonogram of his liver.  They found a 2 inch mass on his liver.  A few MRIs and CTs...and a biopsy later; it was confirmed he has cancer.  We were told it was liver cancer that was contained in the tumor.  We were elated - he was set to have the tumor removed via a liver resection on March 5th.  The doctor did a scope immediately before the surgery and everything looked great; but when they opened him up, the doctor found a lymph node full of cancer.  This was just awful news....kind of like a double whammy, you know (big surgery and he still has still cancer)?  My dad now is recovering from a huge incision (that fixed nothing) and is on Monday having his port put in...to hopefully begin chemo next week.  This is to treat cholangiocarcinoma; the final diagnosis after the surgeon took a look at the cancer.

This is all so surreal....I never thought I'd even have to contemplate losing my Dad at 29, let alone have to explain to my 2 and 4 year old daughters that their wonderful, loving grandfather has cancer.

That said - we are trying to stay positive.  The doctor said without treatment he'd only have 3 or 4 months (which is crazy - he has NO symptoms!) but did not give a prognosis with the chemo.  I guess they'll have to see if the cancer cells respond to it.

Anyway - just wanted to share.  I'm hoping to learn a lot from this website.

aberdeen

Re: My father has cholangiocarcinoma

Hello and welcome (and I repeat Peter) to the club no one wants to belong to. You have come to the right place where members support each other, cheer each other, console each other and truly are there for each other, all the way. 
I have been told (and we have seen on this board) that the true extent of the disease can only be determined during surgery.  I believe in gathering more then one opinion in re: to treatment therefore, you might want to consider sending your Dad

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 father has cholangiocarcinoma

Welcome to the site. I am so sorry things with the surgery didnt go as planned. Like Marion said, sometimes the true scope isnt known until you are opened up.

DONT LISTEN TO DOCTORS PROGNOSIS! Everyone is different, everyone responds differently. Get the things done that need to be done, said that need to be said and then just let your dad live. I get very annoyed when doctors dont realise how this cancer has a mind of its own, and just because they say something doesnt mean it is true for you. I dont know about your dad, but I know I dont have an expiration date stamped on the bottom of my foot.

Are you in Scotland? We have a couple of members there and one's father underwent Photodynamic light therapy. That might be an option for your father also.


Take care and let us know how we can help.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My father has cholangiocarcinoma

Hello and sorry I have to say welcome to our world. We believe in second and third opinions before settling on a final opinion, and then as Kristin says, still not sure what is to come good or bad. This is a wonderful Board of courageous and caring people and I am sure you will get lots of advise. We are here to help, care and vent, what ever suits your needs. Pleased keep us posted and ask away!

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.

5 (edited by aberdeen Sun, 15 Mar 2009 09:01:42)

Re: My father has cholangiocarcinoma

How nice to have a few replies when I woke up this morning!  My Dad got two opinions...he started with his local oncologist and then went to the Siteman Center in St. Louis to have his liver resection with Dr. Strasburg - one of the best.  When that didn't work out, he saw Dr. Tan there at the Siteman Center (this cancer is his specialty) and will have his port put in there and the baseline chest CT there but will be able to have the chemo back home (drugs are drugs, the doc said, no matter where you get 'em).  And....Dr. Tan said there was no reason for him to spend 6 hours round trip driving to Siteman.  He should be livin' his life; and out riding his motorcycle & spending time with his AMAZING family!

And...I'm in Wisconsin in the US.  I lived in Aberdeen, Scotland while in college - spent a semester there and LOVED it.  It's a part of me...and always will be!

You are right about the expiration date - it's not there on my Dad.  smile    (Although maybe I should check!)   We are a very Christian family - one that relies on God. We know he has a plan here - and even though we don't understand what is going on now, there is some true comfort in knowing God knew that surgery wasn't going to work out and that God has a plan for all of us.

I'm glad I found you all!

aberdeen

Re: My father has cholangiocarcinoma

Aberdeen,

All of us have stood in your shoes and there is a wealth of info here. Glad to hear you have a CC specialist; that for us was the biggest part of the battle. Forget the prognosis! I find it irritating that doctors are so willing throw around dates and timelines knowing that attitude is such a part of the battle and further they have no idea what time someone may have.

One of the things to always remember is to make time to spend together LIVING, not just discussing cancer related things. In the beginning I found that difficult; it was so easy to obsess and make CC and losing my father the first and last things I thought of each day. That part will pass, but it will take time. I think it is a conscious decision not to grieve someone who isn't dead yet.

If your father has no symptoms, then he is like mine. My father has ignored his prognosis while seeking (non sickening) treatment. He has decided to continue living and not simply wait to die. I visited my parents on Thursday and had the best visit in a long time. We didn't discuss cancer, treatments, hospitals, etc. It was so enjoyable.

Good luck. I wish your dad and your family peace on this journey,

Jan

Re: My father has cholangiocarcinoma

Dear Aberdeen, it sounds like you have the right spirit!  This is a wonderful support team here with a wealth of knowledge- for the big & little questions that may arise.... keep the board posted & come and visit anytime.  You and your family are in our thoughts and prayers.

Best,
Tess

Re: My father has cholangiocarcinoma

Dear Aberdeen,

I'm sorry you had to find us but all of us are only a keystoke away.  You will find some of the most wonderful, caring people in the world on this site as well as a wealth of information.

You and your family will be in my thoughts and prayers. 

Hugs to you and yours...
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: My father has cholangiocarcinoma

Dear Aberdeen,

Welcome to our little family, your dad has his youth on his side and a lot of family support, I hope the chemo is effective and tolerable.

This is the place for questions so don't be shy.

Patty

Re: My father has cholangiocarcinoma

Dear Aberdeen,
I first want to welcome you to this site, and next give my apologies that you needed to find this site.  Now that you found this site though, you are in good hands.  I unfortunately found this site a while after my dad was diagnosed, and had I found it earlier it would have helped me even more, with all the bumps along the way with this cancer.  However, through this site I have found a great support group, cheerleaders, sounding boards, and most of all many who have walked and are walking in my shoes.   No question is too small.   
I will add you and your family to my prayers
Peace and Prayer
Barbara

The  Lord is my shephard