Topic: My father diagnosed with Klatskin Tumour

My father was diagnosed with a Klatskin Tumour on May 17th. 
We are from Bogotá, Colombia.
He is 65 years old.

I am going to describe our experience and i hope to get your advices.

His first and only symptom was jaundice.  We went to the hospital and after some tests doctors said that he has a Klatskin Tumour.

The tests that they did were:
magnetic resonance cholangiography:
Hypointense mass en T1, isointense mass in T2 at the hepatics confluence with extension to the comun hepatic and cefalic extension in the 4a segment, with not well defined edges. 
There are dilatation of the intrahepatic bile duct.
In the seventh segment  there are a Hypointense image in T1.
There is parenchyma reduction related with the mass at the 4a segment.
There is not lymphadenopathy.
There is a thrombosis of the left branch of the portal vein.

CAT scan with Contrast
it is seen a 24 mm hypodense nodule in the right thyroid lobe.
discrete bilateral posterior basal fibroatelectasics tracts.
small left basal  cyst of 9 mm
no mediastinal or pleural injury
dilatation of the intrahepatic bile duct in both lobes with bad-defined image of 28 mm at the confluence of the hepatics
subcapsular hypodense focal lesion of 19 mm in segment vii
pancreas and adrenal glands of normal appearance

BONE SCAN
negative bone metastasis


The blood test values:
Total bilirrubine: 21.9
Direct Bilirrubine: 17.9
Indirect Billirrubine: 4.0
ca 19-9: 13.9
ca 125 negative


After that diagnosis they decided to put the stents. 
One stent was placed in the right bile duct, it can't be placed in the left bile duct.
After that procedure a pancreatitis (Balthazar b) was generated.  And he was in the ICU for 3 days.

He recovered from the pancretatitis and they did a percutaneous biopsy with negative results for malignancy.
Then we come back to home.

three days after that, my father have fever and vomiting.  We come back to the hospital and the diagnosis was an abdominal sepsis.

They decided to do a percutaneous biliary drainage.  It was only possible at the right lobe because the left lobe has an important decrease in size.

He was in a 14 days antibiotic treatment at the hospital and after a good response he is again at home.

The last blood tests (June 7th) have the following values:

Total Bilirrubine: 5.4
Direct Bilirrubine: 3.5
Indirect bilirrubine: 1.9
glutamic pyruvic transaminase: 120
glutamic oxaloacetic transaminase: 81
alkaline phosphatase: 316
Creatinine: 0.6

Now we are at home expecting what kind of treatment can be done.  But it is not clear because of the negative result of the biopsy.

Have you some experience with similar cases.
Thanks a lot.

Daniel Lopez Monsalve

2 (edited by PCL1029 Tue, 12 Jun 2012 19:10:21)

Re: My father diagnosed with Klatskin Tumour

Hi,
Since there is not any metastasis out side the liver, I will suggest you to see a liver surgeon first for the possibility of surgery . Surgery is the only possible cure for bile duct cancer. After that consultation with medical and radiation oncologist in a large medical institution is recommended. But you have to get the bilirubin down to 2 or less first.
Go 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: My father diagnosed with Klatskin Tumour

We were with the best hepatobiliary surgeons in Colombia, and they said that surgery it is not possible.
It is a very devastating diagnosis.

Re: My father diagnosed with Klatskin Tumour

Welcome Daniel to our remarkable family but sorry you had to join us. I just want to say that when my husband had Jaundice and a high Billie Ruben count and they could not stent internally they went in from the side and stented. Your Dad needs to have the stents so that the bile has a place to go which will relieve the Jaundice and bring down the Billie Ruben. Many times the stents can cause infections but I am glad your Dad is home and feeling better. When one is in doubt as to treatment we always suggest another opinion. We do have members with Klatskin Tumors and I am sure you will be hearing from them. You might also try our search engine at the top of the page. Just type in Klatskin and I know many Klatskin posts will appear. Best wishes to you and your Dad 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: My father diagnosed with Klatskin Tumour

Daniel...a warm hello from me to you and your family.  I am sorry that you had to find us.  Daniel, once adequate biliary drainige has been achieved, options for treatment may be possible.  Don't give up hope.  Please, stay in touch.  We care.
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: My father diagnosed with Klatskin Tumour

Hi,
Then the next thing you should do would be  medical and radiation oncology.
In this case, I will talk to the radiologist first to see whether IMRT, or SBRT would've be useful. Then go to medical oncologist for chemotherapy recommendation (ie: GEMOX or GEM/CIS or GEMCAP; the easiest among the three regimens would be GEMCAP due to less side effects.)
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: My father diagnosed with Klatskin Tumour

Regards

Yesterday we had the appointment with the hepatologist.

He said that because the biopsy result was negative and the Ca 19-9 it low (13.9), he is not absolutely sure that it is a cancer.  However he don't know a differente illness whit this  symptoms and exams results.

His opinion is that because my father  is ok after the external drainage, and is not losing weight he recommended go to home with good cares, good food and a exercise programm, and come back to control after two months.  In this control he will do new exams:  CAT an Magnetic Resonance and new blood tests.

What do you think about that?

Additionaly we are going to visit a different specialist today, maybe an expert in Hypertermia treatment.

It is difficult to know what to do.  Any opinion is apreciated.

Thanks.

Re: My father diagnosed with Klatskin Tumour

Hi,
Is this the SAME hepatologist or liver surgeon that you mentioned on 6/12 that he or she is the best hepatobiliary doctor in Colombia? How come at that time your message sounded like surgery is impossible and now it sounds like they did not think after all your dad's situation is that bad and observation only is needed? How come one doctor gave you such a different diagnosis than the other? What kind of biopsy did they perform? ERCP Brushing or ERCP spyglass?
I am not a doctor,but if this is me, I will get a 2nd opinion from a radiation oncologist and medical oncologist consult right away without delay.
Base on your Scan reports, there are dilated bile ducts which is not good, and there are hypo dense images in your liver. But what do I know, I am not a doctor.Good luck and
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: My father diagnosed with Klatskin Tumour

It is the same doctor. 
I mean doctor thinks that Radiation and Chemo is only for paliative effects.  So because my father doesn't have pain  they are not necessary at the moment.

The biopsy was BACAF (Biopsia Aspirativa con Aguja Fina).  I mean it is FNAB in English.  I have read that this exam is specific in only the 30% of the cases.

It seems like there are not much to do in this case.  Also my father doesn't want to try with agressive treatments as chemo.  Also because after the dreinage he is feeling good.

I have lost all my live with this terrible illness, and all the opinions, readings, papers and web pages drive to the same:  Only paliative cares can be done, and decrease the pain for the patient.  What unfortunately diagnosis. 

Do you now about one person who has long term survival after this diagnosis whitout surgery?  I have not found any.

Re: My father diagnosed with Klatskin Tumour

Hi Daniel,

      I'm certainly no expert in this area, but my understanding about palliative treatment is to hold the cancer at bay as long as possible thereby alleviating or preventing the pain in the first place.  My husband is receiving chemotherapy at present and he has no pain (never has) but he did have itching and slight jaundice that has been relieved.  We're simply hoping it buys him more time (a couple decades would be nice!)  Never lose hope.  I know a surgeon (an ENT) that told me he's seen 2 cases of spontaneous regression of cancer in his career (true miracles).  You just never know!

Re: My father diagnosed with Klatskin Tumour

Hello, sorry to hear that your father is sick and i understand how you feel. Try to stay positive and focused. My father is nearly seven years past diagnosis of klatskin tumor. Surgery for this type can be quite complicated (according to the literature and my fathers surgeon). They did try surgery on my father but said it could be fatal because the portal vein was involved, clear margins might be difficult to achieve and cancer often recurrs. My father's oncologist said that most chemo and radiation treatments are ineffective. My father chose no to do chemo or radiation. My father has had some setbecks, but he is still with us. You need to inform yourself about every possible way you can help your father. This website is a wealth of information. May God be with you and your father. Im sending my prayers.

Sincerely
Narindersingh

Re: My father diagnosed with Klatskin Tumour

Thanks Narindersingh for your words.

Seven years are a lot of time.  I will be the most happy person with this time with my father.

Does your father have stents or external dreinage?

What special things have you done.  Food, some kinds of therapies, tell me more about your personal experience.

Re: My father diagnosed with Klatskin Tumour

Well you can click on my name to see my posts regarding my father. My father had internal stents at first, for 6 and half years. They usually stayed open for long periods of time sometimes a year. Just this last month he had to have an internal/external drain put in. From diagnosis he retired from work, we juiced a lot of vegetables and fruit and basically nourished his body with everything it needed. However we became complacent because my father was feeling relatively well and was quite active and he stopped drinking the juices and stopped the vitamins. He did maintain a relatively healthy diet but his appetite was lower than what it had been prior to cancer. I think he was very cautious about whathe ate because he was afraid of his stents getting plugged. Stopping the juicing was a big mistake. my father only went to the hospital to get stent changes and only saw his oncologist once a year. They were a little shocked that he was still living every time they saw him. My father is 67 years old now. I have done a lot of reading, the information is out there you have to decide what is relevant and what isnt, cross check every bit of information. my belief is that God (or whoever) gave us everything we need to survive on this earth you just need to know how to use it. I feel that building ones immune system is very important. So basically lots of fresh organic fruit juices. Vitamins and mineral supplements especially the ones to protect the liver. Natural bile thinners such as lemon water and beetoot juice. Distilled water to drink, low sugar diet and only healthy fats. My father now takes digestive enzymes to help digest his food. After courses of antibiotics i give him good quality probiotics to help restore natural bacteria in his intestines. Because his bile drains to the outside (some may be draining inside) he drinks electrolyte water to replenish lost salts. It all depends on how he feels, somedays are good and some not so good. I think he is a little drained from fighting but then i put his grand kids in front of him and his will is restored. He is not afraid to die, he just doesnt want to suffer. when we first found out about his cancer we were all devestated and in shock knowing that prognosis is poor especially if surgery does not work. But now because it has been almost seven years we are all prepared (as much as one can be)

I hope this helps
Narinder

Re: My father diagnosed with Klatskin Tumour

Hi,
FNAB as you have already known is not that specific and accurate if they hit the wrong spots. Having pain or not is not a reason for NOT  finding  out exactly what is going on inside the liver and the dilated bile ducts.
I did not have any pain when I discovered that I had this cancer like most of the other patients on this message board. As a matter of fact, my sister in law who died of bile duct cancer(the primary CA) about 2 months ago,did not suffer in any degree or form of pain at all.
It seems to me  second opinion as I suggested before may provide early opportunity for better treatment protocol for your dad.
Every patient is different in their own case due to health status,risk factors and environmental influence . And caregivers should not compare each other's case to determine the outcome of the patient and that is why 2nd opinion by medical professional is a must before decisions are made.
Internet comments from message board by different people, including ours, are for informations encouragement and sharing . Knowledge is one thing, but ultimately someone have to make decision based on the best available resources, and this is belonging to the radiation,medical oncologists as well as the institutions that can provide you the multidisciplinary approach for your dad.
The facts remain true that the earlier the correct diagnosis is made,the better outcome it will be in general.
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: My father diagnosed with Klatskin Tumour

My father chose not to do chemo or radiation because in his opinion chemo and radiation kill healthy cells along with cancer cells. From the reading ive done most chemo drugs are carcinogens themselves and people that handle them do so with extreme caution. So someone who has cancer is treated with medicine that can cause cancer and that weakens ones immune system that appears to be contradictory. That is just my opinion though. With cholangiocarcinoma symptoms appear when the cancer is already in a late stage which is a disadvantage. my father has lived relatively well for almost seven years.

Re: My father diagnosed with Klatskin Tumour

Hi,
The most important is that, after you explore all the opportunities for you father ,you make sure your dad knows each of the advantage and disadvantage of each treatment plans, then it is up to him,under your help to decide what he wants to do the treatment or not to choose anything at all. It is the right of the patient,of sound mind and good understanding of his illness to make the call. But whatever your dad choose after your devotion and love for him; you know you have given your best and there will be of no regret for you in the future.and in that way, you will feel much better and relief  when memories play its part in you life
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.