Topic: Newly diagnosed cholangiocarcinoma

I was diagnosed last week with cholangiocarcinoma.  A lesion (a little less than 3 cm) was found incidentally on a gallbladder ultrasound.  I had never had any gallbladder problems prior to this and they are felt to be unrelated.  I then had a CT scan, being reassured throughout that it was most likely an atypical hemangioma.  A biopsy was then recommended and the results went back and forth for seven days...the very longest 7 days.  I was then told that it was either gastric primary, liver, bile duct or pancreatic.  I had a PET/CT scan that showed only the single liver lesion.  My liver function tests are fine and unchanged from baseline and all tumor markers are negative.  I'm scheduled to have a resection next Wed. 5/21.  The surgeon said he would remove 1/3 to 1/2 of my liver and also do an exploratory and lymph node sampling.

At this point I am just holding on to the hope that this can be cured with surgery.  It has been difficult for me to seek any information about this because it is so frightening.  I was just living my life...no symptoms at all...and then this.  It is just so hard to believe this is all happening.  So, at this point, I am just seeking support in this very difficult time.

Thanks for being there!

Jean

Re: Newly diagnosed cholangiocarcinoma

Jean,

This is EXACTLY what happened to me. My tumor was found incidentally during a gallbladder ultrasound!  It took a few weeks to be diagnosed, but I was set up for resection within 3 weeks. 

You can find my info on this website if you look at my posts, so I won't go into the whole story here, but I wanted you to know that I am now 15 months post-resection and I feel great, no sign of any cancer.  I am now going every 6 months for CT scans, the next being in September. 

There is definitely hope. Your tumor was found early and it sounds very promising.  It IS a very difficult time.  But be strong.  Only one more week.  You will feel crappy for about 4 weeks, (not horrible, just crappy after a couple weeks) and then you should start to get some energy back. I was in the hospital for 9 days and then off work for about 10 weeks.Have been back for over a year now, and honestly, I feel better than I have for years. I have my bad days (mentally, not so much physically), but they are getting farther and farther between. 

Some days i feel so guilty for being so lucky that the doctor's found this early and were able to take it out, but people need to know that there is hope out there.  And hopefully you can be that ray of sunshine for someone on this site.


I am so glad you found this site. These nice people are very helpful and really understand what you are feeling and going thru. Please keep us up to date on how you are doing.

Sue

Today is a new day. Congratulations, you are already a survivor!

Re: Newly diagnosed cholangiocarcinoma

Sue

Thank you so much for your reply!  Your story gives me so much hope and strength...I don't really have words to say how much this means to me.  I'm sure you know!!!  Thank you so much...I needed your words so much at this moment.  Hope is such a powerful thing...know you have given me that at a time when I so needed it.

Jean

Re: Newly diagnosed cholangiocarcinoma

Jean,

I know this will sound strange, but I am happy for you.  You are one of the lucky ones who are going to be operated on to remove this horrible cancer.
My husband has only been offered palliative care.  He would rather fight this on the table as you are.  My prayers are with you for an excellent outcome.

Karen

Wishing all God's blessings!

Re: Newly diagnosed cholangiocarcinoma

Thank you Karen...I'm very sorry to hear about your husband.  It is indeed a horrible disease.  It takes a great deal of strength and courage to deal with...wishing these for you and your husband.  And for hope.

Jean

Re: Newly diagnosed cholangiocarcinoma

It's a real shock to be given a diagnosis like this, but try to remember that every case of this disease is really different. There are some people who do very well indeed, and there's NO reason you shouldn't be one of them!

Also, people have different experiences after surgery, and of course a lot depends on your age and general  health. I had my resection when I was 46 (sounds a lot like what's planned for you-- one lobe of my liver removed along with my gall bladder and various other bits) and I only felt truly awful for about two weeks afterwards, but was able to start working again part-time after four weeks (a desk job) and go on a business trip after six weeks.

I had a recurrence that wasn't resectable, but nearly five years on, I'm still going strong!

I'd like to recommend a wonderful book to you: There's No Place Like Hope, A guide to Beating Cancer in Mind-Sized Bites, by Vickie Girard. It's in very short sections that are inspiring and encouraging and will make you feel like you WILL beat this!

Wishing all the very best for you! Please keep us posted.

Kristin

Peace, hope, and healing to all!

Re: Newly diagnosed cholangiocarcinoma

Welcome to our club. This club is very unique as all the members are extremely brave, very strong mentally, at times even funny and always supporting one another! My husband had the same type of rapid onset almost 3 years ago. He is now 75 and survived the worst...a Whipple Surgery. His cancer was in his bile duct valve. I won't go in to our details either, you can find all my posts (Lainy) but he is doing well even though he is having a kidney problem that hopefully will be resolved the end of June.
He also sees the ONC every 3 months as this is the kind of disease that needs to be watched and thats OK, to come up with good results. He is still working full time, golfing and he would tell you that the most important thing is to think positive! And that prayers do work! We will all be thinking of you and waiting to hear that you are doing just fine.

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: Newly diagnosed cholangiocarcinoma

Jean...I can only echo what Kristin, Lainy and the others who responded to your post.  Positive attitude,advocate strongly, and don't think twice about a second opinion or third.  Also possibally some adjuvant chemo therapy might want to be thought about.  I am very hopeful person and really feel the odds are better when found sooner for most people.  I have passed the nine year mark but not without a battle mentally and physically.  It has mets pretty much everywhere in my body.  My attitude at the moment is the cancer can live within me but it has to do so peacefully without making things unmanageable.  I have a chemo cocktail approximately every 6-8 weeks currently keeping things pretty much at bay. Luckly it has not caused bile duct blockage so far and I'm hoping to keep it that way if I can as this disease has a mind of it's own and responds differently on everyone.  The mind is very powerful, holds alot of energy that can be channeled in to. Wish you the best on your resection.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Newly diagnosed cholangiocarcinoma

Hi Jean,
It looks like it is discovered in an early stage and you have all the chances to win this game. I know it was horrible news for you and not easy to digest. Try to stay optimistic and be happy with your chance. I'm going to follow how you're doing and wish you strength and good luck.
Iris