Topic: My dad's been told he has a CC

Hello everyone,

We are originally from Colombia, I live in Australia but all my family including my parents and sister are back home. My dad is a healthy 48yo who presented to the clinic nearly a month ago with symptoms of jaundice. He's had several tests performed such as  CTS, PETS, MRIS, ERCPS, an FNAB and some CA antigen blood tests. He has not shown any palpable masses or other characteristic symptoms of this condition.

From all the testing he has had the Ca19-9 was extremely elevated (12,000), and only the MRI showed a lesion in the common bile duct which led them to think he had a tumour, although the type is not know yet (possibly a Klastkin) -
on the bright side, the other exams showed there was no metastasis and his jaundice was relieved by inserting a percutaneous billary drain.

The treating hepatic surgeon (Dr. Alonso Vera Torres) from the Santa Fe foundation hospital has stated that surgery is not an option at this point even though the cancer is in stage 1 but that perhaps chemotherapy and radiotherapy are a better treatment for him; nonetheless, depending on the response to the treatment a liver resection or transplant could be possible. He has referred us to the oncologist in this hospital and he has also stated that due to the location it is virtually impossible to take an accurate biopsy to identify the tumour.

Dr. Jorge Otero, the oncologist has suggested the use of chemotherapy drugs such as gemcitabine in combination with something else that I cannot recall as this is the common mix. However, we were told by the Dr that the therapy has been shown to be effective in approximately 20% of the population and that sometimes it can damage other organs. My dad considers this to be an average treatment and makes him think twice before agreeing to it as his other organs are healthy.

Doubts have started arising and we would like to hear feedback from individuals who have been through the same experience, we would really appreciate it if anyone could tell us what they suggest. We are open to any therapy (homeopath or allopath) anywhere in the world so long as this is proven to be effective and it gives my dad quality of life.

Perhaps not the place where I'd like to meet people but that's what we go through in life and I am so glad there a spaces like this out there. You are all amazing!

Kind regards,
Juan Miranda
https://www.facebook.com/JuanPabloMirandaPantoja

Re: My dad's been told he has a CC

Welcome, Juan from across the pond. You have come to the best place to be for CC support and I am sorry about your Dad's diagnosis although it really has me in a fog. If he has no METs, and they are not sure what kind of tumor or where, and it's Stage 1, I believe it's the right time for a second opinion. You want to be in a hospital, and with an ONC  who is extremely knowledgeable about CC. Lets see what some others in our smart family have to say. Wishing you and Dad the very best.

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 dad's been told he has a CC

Hello Lainy,

Thanks for your prompt reply. We ha definitely considered a second opinion and it's definitely happening as soon as dad gets discharged from hospital. Thanks so much again.

Regards,
Juan

Re: My dad's been told he has a CC

Hi Juan,

Welcome to the site. Sorry that you had to find us and I am sorry to hear about your dad. But I am glad that you've joined in with us here as you are in the right place for support and help and I know that you'll get loads of each from everyone here.

Thanks for sharing about your dad. I agree with Lainy about seeking a second or even a third or fourth opinion if you can and I am glad that your dad will be doing so once he gets discharged from hospital. And please let us know how that goes for him.

As to the chemo combination, the other type of chemo in that combo that was suggested to your dad most probably will be cisplatin and that is a common chemo combo for CC. Many of our members or their loved ones have or are on this chemo combo and you can read through the chemo board here  http://www.cholangiocarcinoma.org/punbb … .php?id=16 should you wish to read some of their experiences with it.

Surgery could well be a possibility after some treatments and I would not be ruling that out, others have had that. No metastasis is good to hear as is the relieving of the jaundice and the itching that comes with that. My dad never had chemo or surgery so I can't share any of his personal experiences with that, he had PDT.

Please let us know how things go for your dad and if we can help then please just ask and we'll do what we can.

My best wishes to you and your dad,

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 dad's been told he has a CC

Hi Juan,

I just wanted to say welcome.  You will get so much support and information here.  I'm with Lainy and Gavin on the second opinion.  Diagnosing this at stage 1 is a positive thing if I can say that - I don't want to belittle your dad's diagnosis in any way.  But he needs a doctor and a team that are expert in this disease and have  treated many cases.  Don't be fobbed off if you have queries and questions in your gut.  A great doctor will listen and address them all.

X

Clare

In the stars now . . . .

Re: My dad's been told he has a CC

Good advice about seeking a second or third opinion.  There are excellent hospitals here who specialize in treating CC.  You are doing the right thing!
Best wishes and prayers.

Re: My dad's been told he has a CC

Hi Juan I wanted to extend a warm welcome and hello to you.  Sorry to hear about your dad.  It sounds like you guys are headed in the right direction and getting the answers you are looking for as far as what's best and what your options could be.  Blessings to you and your family and please keep us posted.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: My dad's been told he has a CC

Hello everyone,

Thanks for all your lovely welcome messages and advice.

Regards,

Re: My dad's been told he has a CC

Hi Juan. It must be very difficult living so far away with your dad being diagnosed with CC. Being stage one sounds like there is a lot of hope. I replied because we live on the Sunshine Coast, Qld so not too far away. My sons are possibly a similar age to you. You can read my husbands journey with my introduction story on this site. I wish you all the best for your family and your Dad as he walks this journey.
Judth