New member with an old story :)

Welcome Ed & I wish you all the very, very best. As the sister of someone with CC I know how alone I felt until I found this site. I was made very welcome & was immediately taken to the hearts of the wonderful people here. If your family wants to join us, I would strongly recommend they give it a try.

I have joined & post when I can; I know my mother reads posts but would find it too painful to join in; others in the family would prefer to read up all they can about the cancer itself, rather than about the emotional side of it – we’re all dealing with this differently. My love goes to you & your family.

Julia

Hi Ed,

My only comment is – shame on your doctor for giving you an expiry date. There was a study done at some point on this, and they found that when doctors give the patient an estimated time of death – the patient is more likely to fulfill that expectation than to try to fight it. I don’t recall the numbers unfortunately. But I do recall that they were significant.

I am 37yrs old with stage IV intrahepatic cholangiocarcinoma. When I was first diagnosed I really didn’t know if I truly wanted to go through the fight or not. One day I realized if I didn’t go for treatment it meant I wasn’t giving it my all. And that is so not me!! Though my life has been completely turned upside down and it seems to be all about my cancer I cannot allow the statistics of this cancer determine my outcome. Remember, doctor’s base much of their knowledge on statistics, education, and observations. My thought is – they have not had an opportunity to observe ME yet. They have absolutely no idea how my body and mental health will take to treatment.

I know we all must make difficult decisions, and I am not trying to change your mind about the decision you have made – I just wanted to give you another way of looking at this.

I wish you and your family all the courage during this time,
Melanie

Hello Ed….I would also like to welcome you to this site as Lainy, Viola, and Jolene have done. The prognosis of a six month life expectancy given must be shocking to you as well as your family, and that, understandably so. Ed, I am wondering whether you have already sought out the opinions of other specialists familiar with this cancer. In many instances it is possible to forward medical reports including CT scans (3-D Tri Phasic) for evaluation and second or third opinions. Ed, as mentioned by Lainy and Viola, there have been patients on this board who, just like you, chose not to intervene and to let this cancer take it’s course, and several have outlived the given prognosis. Please, continue to reach out to this board and read up as much as you can by using the Search Function, on top of the page. It will lead you to previous discussions pertaining to everything and anything encountered with this cancer, and new information is accumulating, daily. And as Jolene pointed out so well: There is no waiting line.
I am sending all my best wishes your way,
Marion

Ed P, could you give us more information about your cancer? From CT/MRI/PET, what did your doctor see? What did your blood test show? How about your liver and kidney function? How old are you?

My Mom was 60 years old and diagnosed with cc, stage IV on July 31. In the beginning, I felt so shock, and I also want to give up treatment. I think quality of life is more important, so I hope my mother try to use Chinese medicine, Qigong, eating lots of vegetables…. ect to control the tumor. Afterall, if those method does’nt work, they won’t severly effect my mother’s life quality.

But after I found this website, I found there are still some people prolong their life with good life quality by receiving medical treatment, I started to feel I shouldn’t give up so quickly.

Actually, my mother has received 5 times of chemotherapy with 5-FU regime. She has no severe side effect, although her CA19-9 seems keep going up. Until now. my mother looks good. Besides, she is too young….. For me, it’s hard to say ” give up ” now.

I think your family don’t want you to suffer from unmeaningful pain. But they feel your situation is not to bad and it’s worthy to try to receive more agressive treatment.

I hope you can read more posts on this website. Maybe you’ll find there’s still some hope for you.

Hello,

I am new here. I was dignosed in 6/09, given six months. I am curious how this will play out. I have chosen not to have treatment. My family is having a difficult time with this and I would like to have information to help them and to let them know what to expect.

Thank you so much for sharing your story with us. I cant add much to Marions expertise, but I do agree with everyone that you and your family suffered a huge loss at the hands of cholangiocarcinoma. You husband was way too young to leave this earth and you and your sons were too young to lose him. My father died on April 22, of this year after a 20 month battle, and I didnt discover this site until a year after he was dianosed, and I thank God I did. I would have been lost without the wonderful people on this board. It is very bittersweet that this board is growing everyday, b/c we all know why we are all here, but the feeling of knowing I am not alone is priceless. Thoughts and Prayers with you

Hello, While I am no expert on CC, it breaks my heart to read your story. Rick, you and your kids were simply too young to have to endure so much heartache, but as you know cc knows no limits. I lost my Dad in March of this year to the disease. You’re right to applaud those that created & run this organization, they’ve been such a source of help to so many of us- as I think you too will find as you continue to explore the site. You’re in our thoughts….

-Tess

Hello and a very warm welcome. Thank you for sharing your story and therefore, adding Rick to our memories. I think, all of us think and worry about a genetic predisposition of this disease. Research has shown that some disorders may increase the chances of developing Cholangiocarcinoma. These include: Primary Sclerosing Cholangitis (a chronic inflammation of the bile ducts,) Chronic ulcerative colitis (chronic inflammation of the bowel,) and Choledochal Cysts (sac-like structures forming off the bile ducts.) A genetic link has not been proven however, we have seen, on this board, several family members with this disease. There is, in my mind, not any current statistic regarding the survival rate of this cancer but, I believe, that in general, patients live longer then they had even 5 years ago. Many times, Chemotherapy is being used in combination rather then a single agent only and those patients eligible for pin-point radiation have benefitted from successful treatments. Also, imaging with either, CT scans, or MRI