Topic: Hilar Cholangiocarcinoma

Hi All,  I am thankful to have found this site. My mother (50 years old) has been diagnosed with Hilar Cholagiocarcinoma last month and the doctor informed me that she has only 6 to 12 months to live (which i don't want to believe).  Metal stents have been implanted in her bile duct to ease the jaundice. And now she is gaining her weight back, in 3 weeks she gained back 2 kgs. Her only complain after the stents is that she is having a mild stomach ache and she is taking pain killer which kills the pain for almost 2 days. Is this normal while having stents in place? And also, the bilary brushing that her doctor performed during endoscopy shows negative.  Now that her billirubin level comes down to 2, (it was 9 before the stents) we are advice by the doctor to take chemotherapy.  How accurate is this brushing, can we take biopsy for this type of cancer?

Re: Hilar Cholangiocarcinoma

Dear Ruali, welcome to the best place to be for CC and I am sorry to hear about your Mother. We are big believers in 2nd opinions and we do not believe in time frames. Normally stents are not painful after insertion and it is a possibility that the stent is not in place. I would definitely get another opinion and I would ask her ONC what the chemo is going to do for her if he feels she may have less than a year. It is that old question of quality of life over quantity of life. Please try to get that 2nd opinion and let us know what happens as we truly care!

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: Hilar Cholangiocarcinoma

Thank you Lainy for your warm welcome and your suggestion. This site has given me so much relieve knowing that we are all in this together fighting for this dreadful illness. I will try to give regular updates on the progress of my mothers treatment. 

I want to know if this bilary brushing is accurate or not? I have research the internet and the number of false negative is around 45%.  I will talk to our doctor to see if they can take biopsy to secure the findings.

Re: Hilar Cholangiocarcinoma

Hi Ruali,

Welcome to the site although I am sorry that your mum has been diagnosed and you have had to come here.  My understanding is that diagnosis can be challenging and that brushings can indeed come back negative when someone does indeed have CC.  The stomach pain might be unrelated to the stent placement and there could be another cause for it which I would ask the docs about.

Clare

In the stars now . . . .

Re: Hilar Cholangiocarcinoma

Hi Ruali, I am not up on the brushings. At the top of the page we have a search site and if you click on that and enter anything you are looking for, usually posts pop up on that subject.

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: Hilar Cholangiocarcinoma

My husband has intrahepatic cholangiocarcinoma. He has a stent with an external biliary drain bag. They did brushing 2 or 3 times and never got a positive biopsy. We had a hard time understanding this. The oncologist told us this was common. They told us they could make a positive diagnosis without continuing doing brushings. It has been over a year. He does in fact have ICC. The diagnosis is made based on other tests and symptoms.

Re: Hilar Cholangiocarcinoma

Thank you all for your input.  We will go to a different oncologist to make sure that she is rightly diagnosed.  She is doing very well after the metal stents only that she is having this mild pain in the rib cage area near the stomach while coughing or sneezing.  As per your suggestion, i will take her to the gastro to check on her stents again if it is rightly placed.

Re: Hilar Cholangiocarcinoma

Dear Ruali, all sounds good and know that you are doing all the right things that we know of although it's difficult sometimes to know what to do with this rare monster, CC. Glad we are helping and you are not alone we are all here for you and your Mom!

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: Hilar Cholangiocarcinoma

I just want to include the cytological examination results, i am not sure if this is going to help us find the right diagnosis -

Specimen Type : Smear
Microscopy : Smear shows benign biliary epithelial cells in cohesive sheets and dispersed singly admixed with fair number of neutrophils.  Backgroud shows microorganisms (bacilli).

Impressions : Acute cholangitis.  Negative for Malignant cells.

Re: Hilar Cholangiocarcinoma

Ruali, sorry I am not a Medical Person but perhaps someone will come along who knows these medical words. Again, you can try our Search engine at the top typing in one at a time or Google each word.

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: Hilar Cholangiocarcinoma

Ruali....you would want to ask the physician for explanation:
appears that the brushings came back negative for Cholangiocarcinoma however; as has been mentioned by Shellina and Clarem, this is not unusual. 

Based on what you have posted, it appears that your Mom has a bacterial infection - Acute Cholangitis.  Has she been given antibiotics? 

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: Hilar Cholangiocarcinoma

Ruali, I am sorry about your mom, but am excited to tell you I am almost 5 years cancer free and I had hilar cholangiocarcinoma. I have an amazing story to share and our Foot loose Notebook has a video I made with my Hero Dr. William Chapman. Having hilar with no mets could make your mom a candidate for a transplant if she has the right doctors. I am alive because of a transplant. (I had 2). When I was first diagnosed my doctors exact words were "I know it will come back a false negative but I know it is CC", he was right it took 2 weeks to get a positive reading.
Please email me jrdunnagan@gmail.com and I will be happy to share more info. I know Dr. Chapman is known internationally and I am sure he would be a well of info for you.
There is HOPE!!
Lots of prayers-Cathy

Re: Hilar Cholangiocarcinoma

Hi All,

Am back to give a quickie update.  So we decided to get a second opinion from one of the biggest cancer institution here in Asia and met with an Oncologist.  We have done several tests and here is the results -

CEA 2.38
CA-19.9 < 2.00

Bil - 1.83
Alb - 4.0
WBC - 8.67

MRCP (31.03.14): Non-visualization of proximal CHD. Distal CHB 6.5 mm
Pneuobilia bilaterally

CECT Chest, Abdomen, Pelvis (TMH) on 07.05.14:
Biliary stent in situ (CBD & CHD) with pneumobilia. No evidence of malignancy

Imp: Benign biliary stricture
However, since very old h/o cholecystectomy in 1992, risk of malignancy is present

Plan: Close observation
Review with PET-CT after 2 months

Now i am confuse whether to believe this knowing that there are lots of false negative tests.

Re: Hilar Cholangiocarcinoma

Hi All,

Just wanted to let you know that  after 12 months of diagnosis of CC (our first doc predict that she has 6 to 12 months), my mother passed away last month.   We've been to 3 different hospitals here in India and met with several doctors who are not able to give her any kinds of treatment other than placing stents after stents. She had 1 metal stents with 2 plastic stents. 

I think that one of the reason why she was with us for 12 months is that, she cannot read English and she never knew her illness was cancer till her last breath. If she knew that she had cancer, i don't think we will have her this long.   We loved her and take care of her as much as we can and never do anything that will hurt or worried her.  We never have any family argument in front of her for 12 months.

On 30th Jan, my youngest brother was diagnosed with septicaemia and was in ICU. We never informed my mother about my brother's illness as she was weak that time.  We told her that he is going to be alright and fortunately she got good sleep the night when my brother was unconscious.  On 31st Jan, we woke her up at 6 AM to let her know that my brother passed away at 5:25AM.

From the day my brother died, her health spiral downhill, she started having nausea, pain on her shoulder and her stomach becomes more and more swollen.  We went back to the hospital and she passed away on 14th Feb 5:25 AM exactly 2 weeks after my brother died.

Losing 2 family members in 2 weeks is really devastating for the rest of us.  But we are trying our best to keep a positive mind.  And I would like to request this CC family that, if you have any members of your family suffering from CC, please love them, talk to them, do their favour, make them happy, don't hurt their feelings, cos you never know when this deadly disease will take away your love ones.

Re: Hilar Cholangiocarcinoma

Ruali -

I am so truly sorry to hear of your mothers and brothers passing. It is heartbreaking to hear that this disease took her from you. It is however, wonderful to hear how your family was around her and seemed very protective of her.

My husband and I just started our journey with CC and we pray everyday that his surgery will cure him of this disease.

My thoughts and prayers go out to you and your families loss.

Re: Hilar Cholangiocarcinoma

Dear Ruali, I am so sorry to read about your devastating loses within such a short time. Perhaps your Mother had that 'Mother's' feeling deep inside and she wanted to go with your brother. Please accept my sincere sympathies and know that they are both at peace and happy.

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye
For everything beautiful that you see
will bring a memory of me.

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: Hilar Cholangiocarcinoma

Dear Ruali,

I am deeply sorry for the loss of your mother and brother.  Your posts make it so clear how much they were loved and how you made sure to let them know they were loved.

My thoughts and prayers are with you and your family,

Catherine

Re: Hilar Cholangiocarcinoma

Dear Ruali,

I am so sorry to hear that you have lost your dear mother and also your brother in such a short time.    You and your family have my deepest sympathy.    My thoughts and prayers are with all of you at this sad and trying time.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hilar Cholangiocarcinoma

Dear Ruali,

I am so deeply sorry for the loss of your mother and brother. I can't imagine how painful it is to lose two family members so close. Please know that I am praying for strength, comfort and peace for you and your family.....hugs to you.
Melinda

Re: Hilar Cholangiocarcinoma

Dear Ruali,

I am so very, very sorry indeed to hear of the passing of your dear mother and brother. I so wish that I could say something that would help ease the incredible pain that you and your family must be feeling right now. It is hard enough losing one member of your family but to lose 2 in such a short period of time is beyond belief. Life can be so very cruel sometimes.

Please know that we are here for you and my thoughts are with you and your family right now.

Hugs,

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: Hilar Cholangiocarcinoma

My deepest sympathies in the loss of your mother and brother.  I know how heavy your heart is, but I also hear in your words, your deep love for your mother.  She must have been a wonderful woman to have raised a very special family who cared for her the way you all did.

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.