Topic: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hello:

I just discovered this website and have tons of questions and hope some of you can please give me some answers.  My 60 year old male friend was just diagnosed three weeks ago with intrahepatic cholangiocarcinoma.  We have been on such a roller coaster ride because of all the different tests they have run.  He has had Ultrasound, Ct Scan, two ERCP's, EUS and MRI.  All the imaging test confirm that it is bile duct cancer.  Two bile duct brushings and one tissue biopsy have come back negative -- no abnormal cells.   The doctor assured us this happens quite often but we found it to be odd.  It does not appear to have metastazied anywere else.  His doctor pretty much told us it was inoperable and he has six months to live if he did nothing and less than one year if he had treatments.  We have been frantically attempting to get a second/third opinion.  We live in Virginia.  A second opinion has now resulted in a surgeon in New York agreeing to attempt to operate.  He, of course, told us that 50% of the patients that are opened up have to be stitched right back shut because they soon find out it is not resectable.  Has anyone on this site had surgery?  How long are you typically hospitalized?  Is the recovery a very long process?  Any timeframe for return to work.  When released from the hospital, should he plan on having to stay in New York for a long period of time?   Sorry for all the questions, we are just so overwhelmed by all of this.  His surgery is scheduled for late August and we are so nervous about waiting  3 more weeks.  Any  advice would be so appreciated.  My heart goes out to each of you after spending an incredible amount of time reading all your posts.  God Bless...

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hi Nancy,
I am sorry to hear about your friend.  My husband went into surgery to remove what was thought to be a suspicious tumor.  After they opened him up they discovered it to be bile duct cancer with some lymph node involvement.  It was his surgeon's decision to resect his liver, anyway.  I think my husband's age factored into the doctor's decision (50) as well as a healthy right lobe of the liver.  He told us that most surgeons would have closed my husband up once they discovered the spread to the lymph nodes. The surgeon was able to establish clear margins after surgery.  The lymph nodes remained the problem.  We were told it was not a question of "if" the cancer would return but "when" the cancer returned.  But I truly believe this surgery extended the life of my husband.  He was 4 days in the hospital and returned to work a couple of weeks later.  There was abdominal pain that he experienced but it did not hold him back.  Much was just the healing process from the surgery.  For 1 1/2 years he continued to say that he felt some discomfort but he did not complain of pain.  I know how anxious you both must be.  All of us can relate to your fear and worry.  Hope the best for your friend.  Please keep us posted.  Take care.
Joyce

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hello Nancy
I, too, am sad to hear about your friend.  When you read the posts on this site you will discover that everyone's story is different and it is impossible to give definitive answers to most of the questions asked particularly those related to diagnosis, treatment and prognosis.  The best that can be offered is to give the benfit of our own experiences.  In my case, I was diagnosed with intrahepatic cholangiocarcinoma in July 2006 and had part of my right lobe resected in August.  I was in hospital for 5 days and recovered from the surgery very well.   Unfortunately the cancer returned but I was again a suitable candidate for surgery.  The whole of my right lobe was removed on 29 March 2007.  Again my stay in hospital was short - 6 days this time - but I felt it was harder to recover this time.  This was probably because the surgery was much longer, 6 hours compared with 4 hours last year and much of the trauma to my body caused by the first surgery had not fully healed.

The length of the stay in hospital will be different for each individual and will depend on the extent of the surgery, the individual's own ability to heal, the mental state of the patient and, last but not least, the skill of the surgeons and medical staff.  I wouldn't have thought there was any need to stay in New York after being released from hospital, however, he will probably have to return to New York  on a regular basis, say every 3 months, to meet with the surgeon and the oncologist and to undergo subsequent tests and scans.

When he can return to work will depend on many factors, not least of which is the type of work done.  I am an accountant and much of my work is done with computers.  After my first surgery I was able to start working from home within a couple of weeks of leaving hospital.  I built up the amount of work I was doing over the next few weeks and returned to the office full time in January.   This time, I have not felt up to doing any office work, not because of physical limitations but rather, mentally, I have not wanted to do any.  I have found it really difficult to get excited about auditing historical company accounts when I know that the cancer  can return at any time.  On top of that I was taken into hospital in May, following the start of a chemotherapy trial, and was diagnosed with angina so that has not helped with the mental process!
I have my first post-op CT scan on Friday followed by a meeting with my surgeon on Tuesday and I am really quite concerned about it.  Historically the reults have not been good.  Perhaps if I get the all clear this time I will feel more like returning to work.  Perhaps not!!

I can only wish your friend the very best of luck for the future.  The road ahead for him will be very difficult and  there will be times when he will need lots of support and other times when he will just want his own counsel.  Be there for him.

All the best
Ron

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hello Joyce:
Thanks so much for your very kind post.  Did your husband's cancer return because of the involvement in the lymph nodes?  They don't think my friend has any problems with the lymph nodes, but perhaps the blood vessels.  I guess that is probably equally as bad.  The surgeon indicated if there was a lot of blood vessel invasion he would not attempt to resect at all.  We are just hoping and praying that it is not.  From the time of diagnosis to surgery will be about six weeks so that really scares us to death.   Our main concern is that maybe it is operable now but will not be in late August  Your husband was very young to have this dreadful disease.  What hospital did he have his surgery?  We have had consultations with Sloan Kettering and MD Anderson.  My heart goes out to you and your family.  From everything I have read, it is a very long road to recovery. 

I'll keep you posted and thanks once again for caring...

Nancy

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hello Ron:

Ironically, my friend's name is Ron also.  Thanks so much for your very informative post.  You gave me a lot of valuable information.  I did not know that this type of cancer liked to sneak back around.  I thought if resection was successful, and you had a clean margin, you could perhaps have lots of good years ahead.  Sorry to hear you are having to deal with all that once again.  You will be in my thoughts on Tuesday and I sure hope the CT brings good news.

The reason I asked about having to stay over following surgery was because I did not know if he would have drainage tubes that may have to be removed a little later.  I read a post on another website where a man got on a plane  following surgery and had serious problems with the pressure from the flight.  We will be about 6 hours from home so maybe a train ride will be a better option. 

Ron is a sales manaager and travels from state to state on the East Coast so I am sure he will have to take it easy for a few months.  He too can do lots of work from home on his computer and postpone the personal contacts.

The good thing is that he has zero symtoms right now.  Once the stints were put in, his jaundice went completely away.  The only reason he ever went to the doctor was beause he was jaundice.  He never had any other symptoms.   Neither one of us had ever heard of Bile Duct Cancer.  I wish I still had not...

Ron, take care and I will stay in touch with how my Ron is doing.  Thanks again.

Nancy

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hello Nancy,

my husband and I returned to California from Boston  after surgery with his drainage tubing in place.  We did not encounter any problems.

All the best to Ron and you.

Marions

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Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hi Nancy

I

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

HI Nancy

My husband Ken(45) was diagnosed with intrahepatic CC in June of 2005 after all of the various testing.  He had a liver resection at Stanford due to the fact that we live in Reno, NV and no one here would touch him.  They went in and were surprised- he had a softball sized tumor with two "daughter" tumors.  After about 8 hours of surgery, the doc came out to tell us that they had almost closed him up and sent him home but discussions re: his age led the team to go ahead with the surgery.  Ultimately, it was an 80% resection.  Recovery went well- he was very healthy otherwise.  He was at Stanford for 7 days.  The margins were clear and there was no node involvement.  The oncologists at Stanford conferred with the oncologist here and decided to do 6 mo of Gemzar because that is what is used for Pancreatic CA and that was the closest match they could find.  6 mo of chemo was tolerated fairly well by Ken.  He was not able to work and Social Security disability was actually wonderful to us!!! Surprise!  The unfortunate thing for alot of people, I believe, is that there are no advocates for pt's in my husbands position as far as financial, emotional, support.  I recommend everyone with CA to go to Social Security!!!

Ken had a follow up CT right before his last chemo tx which showed that the CA had returned.  The docs here spoke to the docs at Stanford and decided he would be a candidate for sir-spheres.  It, too, was tolerated fairly well by Ken.  His 6 week check up showed no recurrence.  the next 6 week check up showed that the CA had returned in another spot.  They could not radiate his liver anymore.  So, we do know that it zapped the CA it targeted which I believe was some great news for the docs research.  They told Ken there was nothing else they could do and gave him <6mo to live.  He was with us for 4 mo before the CC finally got him.  We miss him dearly every single minute!

Best of luck for you and your loved one.

Sincerely,
Terri

PS-  The radiation Oncologist that we saw at Stanford- Dr Karyn Goodman was absolutely wonderful!!!!  She has moved to MD Anderson.

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Marions:

Thanks for your post?  How long ago did your husband have his surgery?  Did you have to stay in Boston a few extra days after he was released from the hospital?  Trying to make traveling plans is a little complicated with the unknown.  Thanks again!! 

Nancy

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hey Richard:

Thanks for your very kind post.  So glad to hear your wife is cancer free now.  I know it has to be so very stressful as you prepare for each and every CT scan, always anticipating the worst.  Did she do any kind of radiation or chemo following her surgery?  Our doctor has not mentioned anything about calling an oncologist at this point.  I guess we will have to decide if we want to pursue that in New York or in Virginia where we live.  It would be so much easier at home to have the support of family and friends close by. 

It sounds as if your dear wife has had lots of unfortunate medical conditions and she certainly has been a fighter.  My friend Ron is 60 years old and has never been hospitalized a day in his life so he has no clue what to expect.  I will be by his side every step of the way and hope and pray he will be able to enjoy life as he knows it now in the future.

You and your wife will be in my thoughts and prayers.

I am so thrilled to have found this website with such caring, compassionate people.  Thanks to all...

Nancy

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hello Terry:

So very sorry to hear about the loss of your husband.  My heart just breaks when I read all the posts and see how devastating this bile duct cancer is and how many lives have been lost as result.  It is hard to believe that your 45 year old husband could be so healthy one minute and then be given a death sentence the next.  My heart goes out to you and your family.  I sure hope there are brighter days ahead for you.

Our doctor told us that Ron's blockage (tumor) was very small (1.5 cm) and confined to the bile duct and no apparent invasion to any other part of his body and that the only possible "cure" was resection.  After researching intrahepatic cholangiocarinoma and reading all the posts, I am wondering why he used the word "cure" because that looks like a very small percentage of folks fall into that category even after having clear margins after surgery.     

Thanks for all your information and taking the time to respond.

Take care...
Nancy

Re: Friend just diagnosed with intrahepatic cholangiocarcinoma

Hi Nancy,
Sorry it took so long to get back to you but here are the answers to your questions:  Yes, my husband's cancer returned.  I believe that it was because it had spread to the lymph nodes.  They felt confident that they removed all "visible" cancer at the time of surgery.  My husband's resection was done at the Hospital of the University of Pennsylvania.  His surgeon, James Markman has taken a position at Stanford, I believe.  Best of luck.
Joyce