Any new hope?

asunrae…My heart breaks for you to have lost your beautiful, young daughter to this disease as the natural order of things are for us parents leave this earth first. I so much wish for your broken heart to heal with time.

You must find comfort in knowing that you have done everything possible for Amanda; Cholangiocarcinoma is difficult to detect and treat. And, you are so right in saying that a cure must be found for this cancer.

Please stay with us on this board. We are in this together.

Hugs,
Marion

Hi! I learned oct of last year I have ICC. I was 29 at the time. I’m 30 now.

I’m so sorry you lost your daughter so fast. It breaks my heart. I have two young babies, and they keep me going. I live for them, and my husband.

Praying for your family.
Tiffany

Hi. I’m 32 and was diagnosed with intrahepatic CC about a year ago. I had a liver resection, which removed the tumor and then had chemo and radiation.
My surgeon told me intrahepatic CC is rising among young people and they don’t know why. I didn’t have any risk factors. I don’t have hepatitis, don’t smoke, and I am as skinny as can be. I did drink alcohol sometimes, but just a few times a month. I wish I knew why I got it.

I am so very sorry for your loss. She was so very young and I’m sure you miss her terribly.

Thanks for sharing your story.

Susie

Dear Asunrae,

I am so sorry to hear of the loss of your daughter. My husband passed in much the same way. Very quickly. It is hard to accept that someone so active and healthy and in her case also so young can be taken so quickly by this horribly disease. Our only consulation is that they did not have to suffer for a long time and are now at peace. My husband was 62 and I thought that was too young to lose him but to lose a child and at such an early age I can’t even imagine.

I know how it feels to feel helpless or that you could have or should have done something differently, but there is nothing you did or didn’t do that would have changed things. I felt the same way in the beginning and still do sometimes, but realistically I know I did the best that I could with the situation that was given to us. It is nobody’s fault it just is what it is. It’s not right, it’s not fair, but it was out of our control.

There is no rhyme or reason to this disease and we are seeing more and more younger people being diagnoised. There are so many questions and hardly any answers, but hopefully that is slowly changing. Although it is too late for us, hopefully others will benefit from our experiences and with more awarness and research, some day we will beat this cancer.

You have my deepest sympathy. My thoughts are prayers go out to you and your family on the loss of your dear daughter.

With Love & Hugs,
Darla

Hi, asunrae,

This is just my humble guessing ,it seems more young CCA patient appears monthly here or the story of them became known.

My guess is if this young generation start to smoke early(like in their teens); and compound with the fact that younger generation now are much obese than the generations before them; adding to it, is if they like sushi( uncook raw fish of lower quality); or enjoy Thai or Vietnamese “hot pot ” without boiling hot water to cook the ingredients to well done; then I will not surprise this young generation (20-early 30’s) will have develop bile duct cancer.
Of course the official risk factor for this group of young patients is PSC.
God bless.