diagnosed yesterday with cholangiocarcinoma

After 10 months of tests, CT's and MRI's, finally had biopsy on what I had been told all along was nothing to worry about.  Two days later I found out that I had Cholangiocarcinoma.  I'm scheduled to have left lobe and gallbladder removed next week by Oncology/Thoracic Surgeon.  Still in shock and scared!!  Any advice??

 

On 6/10/2009 pjsamsmom wrote:

After 10 months of tests, CT's and MRI's, finally had biopsy on what I had been told all along was nothing to worry about.  Two days later I found out that I had Cholangiocarcinoma.  I'm scheduled to have left lobe and gallbladder removed next week by Oncology/Thoracic Surgeon.  Still in shock and scared!!  Any advice??

Hello pj,

You should be shocked and damn scared...this cancer is a very serious situation.

I would be very concerned about why they took 10 months to diagnose this cancer.

Where is the tumor located? What stage did they say you are in? Where is the hospital located that your surgeon will be doing this procedure? Are you sure only the left lobe and the gallbladder is involved? Remember doing surgery, they should remove anything that may be potentially cancer infected, lymph nodes included. It also sound like time is important...NOW they seem to be going full steam a head. Too bad they wasted 10 months trying to diagnose the situation. My wife entered the hospital because the standard liver blood test for her annual physical was not in range, her doctor wanted to do and endoscopic procedure. Note: they diagnoses the problem in 30 minutes and she was only in stage II.  

When my wife had surgery in 2003 at UCSF - 2 surgeons did the procedure...both were very experienced surgeons in the Liver Transplant Department. My wife was in stage II which is a very early stage but still deadly.

Read my message to ThomasL the message just before your message. I wish you all the best...Stay as positive as possible, this will help you challenge this very serious situation.

Take Care, if you need additional information on what you may experience through the recovery process...just send a message.....

Leonard, from Alamo, California 

       

 

Dear friend sailing in the same boat of my self

I had the same problem like you had.,had 1st attack jaundice in 2007jan., rpt attacks ., plenty of investigations including multiple ct scans mri angios and mrcp angios   and finally could find out hilar cholangio and got my rt lobe along with gallbladder and common bile duct remooved in 2008 march., back to work  in one month time ., and busy  with my work . till this time  all My LFT USSCANS  AFT /CA19/9 Are ok. Incidentally iam a busy doctor practicing same branch of medicine of Gastroenterology.

luckily for me HPE Came as  well diffentiated  cholangio  and i had edge free resection.

so dont worry go a head  things will be good . only let me know  your reports like USScan / ercp/ spycell / mrcp and mrcp angil/ct angio  etc .so that i can give you more light

As it took 10 months to diagnose  that means its slow growing  so you have good chances of  cancer survival  like me., please feel free to ask any doubts. and  have no fear. thing will be good . be confident and courageous. i was wondering what role your ct or chest surgeon has it here

good lukc 

Dr mahipal p reddy /.

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

., india

 

On 6/10/2009 pjsamsmom wrote:

After 10 months of tests, CT's and MRI's, finally had biopsy on what I had been told all along was nothing to worry about.  Two days later I found out that I had Cholangiocarcinoma.  I'm scheduled to have left lobe and gallbladder removed next week by Oncology/Thoracic Surgeon.  Still in shock and scared!!  Any advice??

 

Your cancer is very serious as my husband also had it.  You do need to find out what stage it is, size of tumors etc.  Since the doctors took 10 months to find out what was wrong, have you researched or had second opinion of type of surgery or treatment afterwards you should be having.  Doctors are very busy people and unfortunately there are many cancer patients for each doctor to treat.  Even while you are devastated by this news of this cancer, the steps you take should be educated ones.  If it takes you another few weeks to be sure of best treatment option, I would take that time.  Its your life.

Another question, how many cases of cholongiocarcinoma has your doctor treated; depending on the stage of the cancer how successful was he/she in treating it and how long was he/she able to keep the patient alive.  Does the doctor know of any trials you should consider?  Does he have experience with trials??  Has a PET Scan been done?  Is there cancer in any other parts of the body - I sure would find that out too before having surgery.

Joan from Hilton Head

 

 

Stay positive. I was diagnosed August 2007 and I am still cancer free.

 

On 6/11/2009 Solutions wrote:

 

On 6/10/2009 pjsamsmom wrote:

After 10 months of tests, CT's and MRI's, finally had biopsy on what I had been told all along was nothing to worry about.  Two days later I found out that I had Cholangiocarcinoma.  I'm scheduled to have left lobe and gallbladder removed next week by Oncology/Thoracic Surgeon.  Still in shock and scared!!  Any advice??

Hello pj,

You should be shocked and damn scared...this cancer is a very serious situation.

I would be very concerned about why they took 10 months to diagnose this cancer.

Where is the tumor located? What stage did they say you are in? Where is the hospital located that your surgeon will be doing this procedure? Are you sure only the left lobe and the gallbladder is involved? Remember doing surgery, they should remove anything that may be potentially cancer infected, lymph nodes included. It also sound like time is important...NOW they seem to be going full steam a head. Too bad they wasted 10 months trying to diagnose the situation. My wife entered the hospital because the standard liver blood test for her annual physical was not in range, her doctor wanted to do and endoscopic procedure. Note: they diagnoses the problem in 30 minutes and she was only in stage II.  

When my wife had surgery in 2003 at UCSF - 2 surgeons did the procedure...both were very experienced surgeons in the Liver Transplant Department. My wife was in stage II which is a very early stage but still deadly.

Read my message to ThomasL the message just before your message. I wish you all the best...Stay as positive as possible, this will help you challenge this very serious situation.

Take Care, if you need additional information on what you may experience through the recovery process...just send a message.....

Leonard, from Alamo, California 

       

 

 

Hi Leonard,      I hope this message finds your wife doing well.  You seem to have years of experience with this horrible cancer, and I would like to ask a few questions.  I had my surgery on 6/18/9...left lobe, gallbladder and 5 lymph nodes removed.  This was a Klatskin tumor, 5cm. Path/Cyto report showed negative margins.  I'm curious if your wife had negative margins after her original surgery and if so, did she receive any chemo, etc. afterwards.  I have already met with a radio/oncol who said that he suggests I wait and see what happens....MRI's every 3 months.  He is basing this on the fact that radiation doesn't seem to help intrahepatic tumors. My reply was that I didn't think I could just sit and wait for it to show up again.  I meet with my medical/oncol to discuss chemo on 7/27/9.  I've done lots of research and there doesn't seem to be any protocol to follow after surgery with negative margins.  I'm in SC and my surgery was done at Greenville Hospital University Medical Center.  My after care is taking place at the Cancer Centers of the Carolinas. I don't think waiting is an option for me....I just feel like I should do some type of treatment.  I found a trial on the ACS site that is taking place at Siteman in St Louis.  Do you have any research on treatment after negative margins?   Thanks in advance.

I am so sorry for your situation. But it is now time to put up your best fight. Get educated about your disease, put God first and foremost in your life right nowN because he is the only one who can either change this situation or grant you peace through your battle. I don't know what stage or even what type of bile duct cancer you have, so your options may very, but whichever cancer you have please do not forget to pray, because I know that prayer changes things. Stay positive and try to relax and remember to get as much information as possible, like: has your dr dealt with this kind of cancer and can your dr put you into connect you to any clinical trials. Fight, fight as hard as you can. With PRAYER!!!!

Please stay strong and never give up hope!!!  God Bless you!