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(0 replies, posted in Introductions!)

Does anyone know why I would have an elevated CA19-9 after having surgery for intrahepatic cholangiocarcinoma 11 months ago?  It has me worried.

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(0 replies, posted in Introductions!)

Does anyone know why I would have an elevated CA19-9 test after having undergone surgery for intrahepatic cholangiocarcinoma (successfully) 11 months ago?  I am concerned.

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(1 replies, posted in Introductions!)

Does anyone know why I would have an elevated CA19-9 after having surgery for intrahepatic cholangiocarcinoma 11 months ago?  It has me worried.

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(16 replies, posted in Introductions!)

Hey, You All,

Just got some more good news from my surgeon's assistant.

The recent blood work came back normal, along with the CT scan.  So I guess this last fever was just a virus or some dumb thing.  Luckily, no new infection or bile leak.  I am so happy.

Again, I am grateful that I had an early diagnosis.  I know how fortunate I am.  And I do offer prayers and any kind of continued support that I can for everyone else here. 

One thing I didn't put in my long, history.  Last summer I had some unexplained weight loss, not too much, somewhere between 10 and 15 lbs.  Also, appetite decrease and lots of nausea.  I just assumed it was my stomach as I have had ulcers in the past.  But I had no clue that it could have been CC.  Also, a lot of itching.  But I have allergies and sometimes itch.  So, again, didn't give it a thought.

I guess we all need to be really aware of our bodies and all the little flags that we receive.  Don't assume it's nothing.  In my case it was a big something!

Thanks again for this terrific place to share and learn.

Take good care, all my new friends!

5

(16 replies, posted in Introductions!)

What a nice welcome!  Thank you all.

My cancer was diagnosed quite by accident.  Last August I went to the local ER while attempting to pass a kidney stone!  Horrible, yes, but in my case, it saved my life.  They did a CT scan.  It was about two weeks later when my urologist called to tell me that they saw a mass on my liver.  So all the tests started then.  First, ultrasound.  Followed by a biopsy of the liver.  I thought, being the optimist that I am, oh, it's just benign, fatty liver tumor, etc.  Imagine my total shock and disbelief when on Friday morning, September 30th, my family doctor called and said it was cancer!  I was in complete and utter shock.  I was thinking, cancer of the liver, I hardly ever even drink!  I was immediately referred to our local oncologist who set me up for a PET scan.  The PET scan showed only cancer in the liver.

The oncologist explained that primary liver cancer is extremely rare, especially if you don't have cirrhosis or hepatitis, which I don't.  I was referred to a liver surgeon at UCSF.  Dr. Hirose is his name and a wonderful man he is.  My daughter drove me to the first appointment.  We live in a rural area in the Sierra Nevada Foothills, halfway between Sacramento and Reno, approximately.  The drive to San Francisco is about three hours.   Throughout this time I tried to maintain a positive attitude, but of course, there were tears, thinking I might not be around to dance at my grandchildren's weddings.  My youngest daughter, Julie, was especially affected by my diagnosis, crying for days.  She is my extremely sensitive, tender hearted and loving daughter.  We decided to at least have fun, enjoying a nice sushi lunch while we were there.

Dr. Hirose was not convinced it was primary liver cancer either.  In fact, he was sure it had metastasized from somewhere else.  He ordered a special pancreatic CT scan, which again, thank God, was negative.  He told us that he would do surgery, remove 1/3 of my liver, the entire left lobe.  He thought the chances were good. 

On December 18th I had surgery at UCSF, a fabulous hospital, with the most caring and dedicated staff I have ever seen.  I was in the hospital for eight days.  I was pretty out of it the first few days.  My children, who are so wonderful, took shifts.  Someone was with me every single day I was there.  My daughter Julie felt I needed an advocate.  So they took turns making that long drive to sit with mom.  I am so very lucky.  Also, my best friend, took one day. 

A tissue sample test was done, to further isolate the exact type of cancer and finally, after three weeks, came back as cholangiocarcinoma.  My surgeon had suspected that during the surgery.  He said one of my bile ducts was enlarged and deformed.  He had to reattach it to the duodenum. 

Three weeks after the surgery, I became very ill, running a fever, nauseous, headache, etc.  They put me back in the hospital and that night I had the most excruciating pain I have ever had.  I ended up crying for hours.  I've never had pain that bad; the kidney stone was close, back surgery fusion was close, but this pain was beyond severe.  A CT scan showed I had a bile leak and infection.  They inserted a drain tube and put me on antibiotics and sent me home two days later.   Continued to improve and a few weeks drain was removed.

In March I started running random fevers.  Usually lasted for one day and would be better.  In another week or so, another would return.  Dr. Hirose asked me to come back to the hospital.  More tests were performed and they found a lot of fluid collected near the surgery site so again another drain was inserted and more antibiotics.

I have been doing very well since then, until last weekend when I started again with a bad headache and fevers.  The second night the fever was 103, so again, back to UCSF.  Another CT scan and blood work.  CT scan showed a small amount of fluid, but nothing worthy of having the tube again, thank the Lord!  I am still waiting for the blood test results.

I think that about sums it up.  Oh, the oncologist felt that no chemo or radiation were needed as the margins were wide, lymph nodes negative and samples around the edge were completely normal.  I got a second opinion at UCSF, to be on the safe side, and he concurred with my home town oncologist.  They are going to do CT scans every four months the first year and I think twice a year for the next two or three years.  Probably until about five years, I think they said.

I know how extremely fortunate I am.  If it wasn't for the kidney stone, I would probably still have it, it would be growing and spreading.  I feel for all the others on this site who did not have the option of surgery.  I am very grateful and thank God every single day that I am doing so well.

I guess I still am kind of in shock.  I can't believe I had cancer, and such a rare cancer, too.  As a woman, I've always worried about breast cancer, and more so because my mother had it.  I don't even think I was aware of my bile ducts! 

Thank you all for listening.  I will keep you posted.   I love this site!  Best wishes and prayers for all of you struggling with this disease.

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(16 replies, posted in Introductions!)

Hi everyone!  My name is Patricia and I recently had surgery for cholangiocarcinoma, intrahepatic (in the liver).  The doc feels they got it all; had wide margins and clear lymph nodes.

I'm so glad there is a place like this to talk to people who have similar experiences.