Topic: Introduction

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.

Re: Introduction

Dear Patricia, CONGRATULATIONS, you are another new Super Hero. Does the ONC plan on any treatment follow thru? I sincerely hope you are doing well, sure sounds like it. Can you share a little more about your diagnosis and where are you being treated. We are a curious bunch here. You have certainly come to the right place for cheering, asking advise or giving some yourself and above all else you will find the greatest people on earth right here in our family. Please stay in touch and let us know how you are doing. Good to meet you and we LOVE the word surgery!

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

Hi Patricia,
I'm not too far...my sister has CC. I'm thrilled you were able to have the surgery and had good margins. Will you have chemo just in case for microscopic cells? Where are you being treated? My sister is at Stanford and Ive read UC San Francisco is also very good with this rare disease. Best wishes for a full recovery and good health.
Willow

Willow

Re: Introduction

Hi Patricia,

Welcome to the site. Sorry that you had to find us all here but I'm glad that you have joined in with us as you are definitely in the right place for support and help, and you will get a ton of each from everyone here! That's great that you were able to have surgery and even better that your docs felt that they got it all. Did your docs mention anything else as a follow up treatment wise?

It is good to meet you as well and I do hope that you will keep coming back here. We are all here for you and will help as best as we can. If you have questions at all then please just go ahead and ask them and we'll do our best to answer. Looking forward to hearing much more from you.

My best wishes to you,

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.

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Hello and welcome.  That is great news on your surgery and we love reading and hearing about the positive news.  There is so much support and experience here -it's a phenomenal forum!

Clare

In the stars now . . . .

Re: Introduction

Patricia.....I don't have much to add to what has already been mentioned by Clare, Gavin, and Lainy other than "hello" from a fellow Californian. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Introduction

Patricia,
Welcome to this wonderful  group. So happy to hear you could have surgery.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Introduction

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.

Re: Introduction

Dear GVG, WOW! You really took a ride on our roller coaster. I was right, you are a super hero and went through it all and with a lot of courage. Thank you for telling your story and I hope for those Temps to leave you alone now. I think your ONC and Surgeon are doing a phenomenal as well as your children, a lot of it is teamwork and attitude. Wishing you the very best and please keep us posted.

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

Hi Patricia,

Thanks for giving us some more info about what you went through and you sure have been through an awful lot! Please keep us updated on how your scans and blood tests all go and I hope that your recovery continues!

My best wishes to you,

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: Introduction

Hello Patricia and welcome!

Yours is the success story we all look for here on this site for inspiration!  I am so glad you were one of the very few who was eligible for surgery.  It sounds like you had quite the ride afterward but I am glad you are doing so well!

Congrats!
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Introduction

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!

Re: Introduction

Fantastic news.  When touched by this disease we often forget that bugs and viruses still affect us and that not everything is related to this cancer.
You are so right in that we need to be acutely aware of our bodies and find a balance between overreaction and persistency.  However; given the rare occurrence of this cancer, it is unlikely for a physician let alone us to even imagine the symptoms related to a serious disease  -  compelling reasons for us to continue to bring awareness to all. 
Thanks so much for joining in.  We are in this together and each and every voice is important to share.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Introduction

Hello Patricia and congratulations on your huge success~! Your surgeon felt good about getting  it all and you found it early, sounds like you are truly one of the lucky ones. I saw my gastroenterologist last week and he pulled out the record from November of '05 and he attributes the swiftness of action in my case was a report by the ultrasound technician that called the soft tissue tumor in my bile duct as very strong possibility of being Cholangiocarcinoma. I was blessed with early diagnosis as well and sadly it doesn't happen often enough. I wish you continued success with this awful disease, Pat

Re: Introduction

Hi Patricia,

That is great news indeed and thanks so much for sharing it with us all! Yes a virus or some dumb thing is so much better than an infect or bile leak!

You take care as well now,

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: Introduction

Hi Patricia,
My Mom had breast cancer too. I saw a segment on CBS nightly news that said if you carry the BRCA 2 gene you are more likely to develop certain cancers and one of them was bile duct cancer. I see my oncologist on June 18th and I want to ask him if I should be tested for the BRCA 2 gene.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Introduction

Hi Patricia,

You've had an amazing journey so far, and it's great to hear that you're doing well.  Sounds like you have a wonderful family and friends that are supporting you, best of luck to you!

Julie