Topic: Introduction

Hi - I am new to this Forum but not new to CC.  My dad passed away from this dreadful disease 4 1/2 years ago.  As crazy as this seems to all of us in my family, my wonderful stepmum has also just been diagnosed with CC.  Dad was stage 4 when diagnosed.  He did have palliative surgery as his tumor was quite large.  Did chemo and a few clinical trials - he fought hard for 1 year and 5 months.  My stepmum presented completely different than Dad - she jaundiced, etc. and ended up in the ER and then a couple of hospital stays.  They couldn't find anything with the ERCP, MRI, Cat scans, but still pressed on.  She has an HMO (which is a nightmare in and of itself) but was fortunate enough to be allowed to go to Cedars Sinai where her amazing gastroenterologist kept at it, because he was certain of the CC diagnosis.  She was going to be scheduled for a resection, but her cat scan showed problems with her lungs.  Then a pet scan.  Then a needle biopsy - and by the grace of God it came back benign.  So this Monday we are hoping that they will be again scheduling her for a resection.  Her CA19-9 numbers are in the normal range, so we are hoping that this is very early. At this point we do not have a stage. My big questions is:  has anyone heard of a husband and wife both being diagnosed with CC?  Dad was diagnosed in June of 2006 so there is 6 1/2 year time span between their diagnosis.  We have been thinking of everything they might have had in common and there are only two things:  massive use of weed killers such as Round Up or Ground Clear with it getting on both of them.  Also, they both have undergone major dental work at Loma Linda - such as cutting into the jawbone, bridges, etc.  The dental work is most likely far-fetched, but I am wondering seriously about the chemical exposure. While we understand that there might not be any reason, it just is, it's one of those things that runs amuck in the thoughts while trying to process this again.  Thank you for any thoughts you can give me - they will be appreciated it.  This is truly a monster - still reeling over losing my Dad - I can't even imagine losing my stepmum - she is my best friend.

2 (edited by PCL1029 Sun, 04 Mar 2012 07:31:06)

Re: Introduction

Hi,
Below are the risk factors for CC;in the United States and Europe, the main risk factors are PSC and choledochal cysts;and the incidence of cholangiocarcinoma is slightly higher in men.

1.General risk factors
  Age>65years(age 30-50 if patient with PSC-primary sclerosing cholangitis)
  Smoking?(?=questionable)
  Obesity
  Diabetes
  Hyperlipidemia?
2.Post surgical
   Biliary-enteric anastomosis.
3.Chronic inflammatory disease
   Primary sclerosing cholangitis with or without ulcerative colitis(30%)
   Biliary tract stone disease
   Hepatitis B(south east Asia)
   Hepatitis C
   HIV
   Liver cirrhosis
   Hepatolithiasis(highest in Taiwan,50-70% CC patient associated with this Dx.)
   Liver flukes (highest in Thailand)
4.Drugs,toxins or chemicals
   Alcohol?
   Thorotrast
   Dioxin
   Vinyl chloride
   Nitrosamines
   Asbestos
   Oral contraceptive (esp.the first generation of oral contraceptive pills)
   Isoniazid
   Phenytoin?
5.Congenital/Genetic disorder
   Choledochal cysts
   Caroli's disease
   Congenital hepatic fibrosis
   Lynch syndrome
   Multiple billary papillomatosis.

References
1.CC controversies and challenges -Tushar Patel vol.8 ,April 2011 Gast.&Hep.
2.Evidence-Based ....Review of CC.-Murad Aljiffry etc. ISSN1072-7515/09
3.Epidemiology;pathogenesis & classification of CC-uptodate.com 19.2:May2011

Adding to the above, If people love seafood or sushi,that is also may be a risk factors but that is my own observation only. And is not proven ,however people who are heavy in weight is a risk factor which I agree.God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Introduction

I have never heard of a husband and wife having CC.  I asked my oncologist and my surgeon about risk factors, why I had it etc.  they couldn't give me a lot of answers, just said it is on the rise and they don't really know why.
I wish you the best and hope it is in the early stage as well.  Please let us know how the resection goes and best of luck.

Best wishes,

Susie

Re: Introduction

Dear Duzalot, welcome to our amazing family! I am so very sorry to hear about your Dad and now your Stepmum. Can't say I have ever heard of a couple getting CC but nothing surprises me anymore. We got 5 new members between yesterday and today and I don't believe that has ever happened before. Don't like that at all, would rather think more people are finding us then to think more CC is coming forward.  The only sure thing we know about  CC is that we know not much. We are a crazy bunch here in that we love to hear the word Surgery, so I am hoping she gets a good word on that. Please keep us updated on what is happening as we all care. BTW I noticed you are from Phoenix, so am I!

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: Introduction

The only explanation that makes at least some sense to me:

Husband and wife ate the same fish meal (or many fish meals) with liver flukes. Both contracted liver fluke infection. Liver fluke infection is a high risk factor for CC.

Any other explanation seems extremely far-fetched to me.

Re: Introduction

Eli, I have always felt about the same way as you do because it appears to me that we have more members off the Coasts then we do in the Midwest.  Also Percy posted the other day that we have so many younger people and a lot of them are  in to Sushi and a lot of the Sushi comes from Asia. Not that we are the experts but you know the old saying, "can't see the forest for the trees". Makes one wonder.
Hope your wife is doing better!

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: Introduction

Thank you to everyone who replied.  Lainy - I live near Flagstaff - not too far from you!  It's a strange twist to be happy to be here to have resources, caring, words of wisdom and back up.  I wish none of us would have to meet this way...but as I like to say "in the meantime" here we are!  My stepmummy is very happy to have me on the Forum.  She likes me to be her "assistant" and ask the questions and then read them to her.  Will keep you all posted - am hoping and praying that her surgery will be very soon.

Re: Introduction

Hi Duzalot,

I just wanted to welcome you to the site. I am my daughter's "assistant" as well.  She doesn't like to hear much about CC. It upsets her too much and she just wants to focus on being happy and living each day to the fullest. So if I hear a great story about someone being able to have a resection or someone having great scans, I let her know so that she can continue to have hope. I hope your stepmum will be able to have surgery soon. Take care and all the best to you.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Introduction

Uggghhh...waiting...waiting...just in need of a vent session.  We are still waiting for a surgery date.  The radiology report was supposed to be sent to the surgeon at Cedars Monday.  They didn't send it until yesterday.  Doctor has clinic days and surgery days.    The surgical nurse asked her when she wanted to schedule surgery and of course she said "right away".  Then the nurse said the doctor will be out the rest of this week...she'll have to get back to her....still haven't heard anything.  This is agonizing and my stepmum is getting discouraged not knowing why the nurse won't even return her calls.  I'm sure there is a good reason, but I'm at a loss for words of encouragement to keep her up, and I want her to have good days before this surgery because I know it will a big surgery.  She actually has never had any serious illnesses, other than a bout with pnuemonia years ago and a couple of broken bones.  She doesn't know how to be a patient, which is wonderful in one way, and hard in another.   Unfortunately, she is learning quickly.  I absolutely hate this.