Topic: Terrified and looking for support and answers

Greetings,
I am joining this site to try and find information for my Dad...and support for myself and my family.   I will give you the progress here as quickly as I can.

In February, Dad who is 76 began having stomach pains.  Had a prostate exam and biopsy to rule out cancer.  No cancer found, but infection ensued from the hospital stay to his blood stream.  Week in the hospital and sent home.

In March, still having stomach issues, of nausea, pain after eating.  Dr. thinks gallbladder sends for testing.  Ultrasound shows many stones and a dilated bile duct.  Specialists comes in and does ERCP expecting to find trapped gall stone.  No stone, but a stricture at the billary juncture of the common bile duct.  Dr. places stent in stricture.  Klatskin tumor suspected.

Dad sent home and two days after ERCP begins profusely bleeding from the bowels.  ER visit and week in hospital finds that the ERCP cut must have bleed open.  Bleeding stops. 

Specialist does 2nd ERCP and does brushings.  Brushings negative.  Second CT and MRCP, no tumor or mass seen.   3rd ERCP ultrasound inside.  NO tumor, mass or lymph nodes seen.  4th ERCP done with Spyglass, no tumor seen but area of concern looks ulcerated under Spyglass and biopsy of inside the stricture taken.  Biopsy negative.

After consultation will all three specialists it is decided that Dad should have surgery at a major Ohio hospital to remove the Bile duct, gallbladder and possible resection. 

Subsequent testing of CT with dye shows scattered lymph nodules in the peritoneum of the stomach lining.  Dr.s are not sure if this is metastisis or an infection left from previous infection.  Surgery is scheduled for bile duct, gallbladder and possible resection.

Dad fails cardiac pretesting and must be cleared heart wise before proceeding.

We are at our wits end, having believed four times now that he is okay.  The doctor who did the Spyglass procedure felt that his gall bladder was so full of stones that is was pulling down on the bile duct and creating the stricture that way and possibly causing some bile to gather there and create the thickening seen. 

In the last two weeks Dad is increasingly depressed, some sickness and vomitting of bile, usually after taking pills like antibiotics.  His appetite is good and since the stent he eats basically anything included greasy things that used to bother him. 

In the three months since this started he lost around 25-30 pounds but remains steady or slightly gaining since.  He has never been jaundiced.  His liver enzymes were moderately elevated but came back down after stent.  His tumor marker was slightly elevated and the doctors felt it was inconclusive. 

Please tell me you informed opinion of what this sounds like.  Is it likely to be bile duct cancer after all the negatives?  What are the chances of survival when there is no "mass" to biopsy?   We are seeing specialists at the University of Cincinnati who are skilled at liver transplant, but I have no experience knowing what they know about this cancer. 

My family is very close and Dad was not sick until February.  Any help, advice or support is greatly appreciated.  I am so glad I found you all.

Re: Terrified and looking for support and answers

LisaAnn:

Welcome to the best site that no one really wants to join!  From what I have read thus far on your post it does not sound like CC, but I am not a doctor - and you just have to trust the doctors and the test results.

It could be possible that the gall bladder was causing the issue - time will tell.

But having said that, knowing that CC is such a monster, no case is exactly the same.  I would ensure that your dad continue seeing his doctors and even get his records to some other facility/doctor to have everything reviewed and see if their conclusion is the same.

I hope it is NOT CC as that would be the best case scenario.

Hugs,
Margaret

Re: Terrified and looking for support and answers

Thank you so much Margaret!  You can't know how much it means that someone is out there to talk to.  It has been a hellish few months and we still don't know anything. 

I don't understand why the doctors still think it is cancer.  On Dad's last CT scan the diagnosis says, "malignant neoplasm of the bile duct."  But when they talk to us, they say, we are not sure.  It makes me worry he should be treated somewhere else.

We live about 6 hours from Cleveland Clinic, but Dad does not want to travel.  I have wondered if a doctor there would look at this reports without Dad actually being there?  Not sure if that is possible. 

Thank you again.

Re: Terrified and looking for support and answers

Dear LisaAnn, welcome to our wonderful family but not sure either. I would definitely send all his test results to another Hospital for another opinion. Sometimes it is very hard in the beginning to get a diagnosis of CC. Some of the Hospitals we recommend are Mayo Clinic in Rochester Mn, MD Anderson in Houston or Sloan Kettering. We have a great listing under Hospitals on our home page. The not knowing is the absolute worst. I am glad your Dad is feeling better but I agree you need to know for sure that it is or is not CC. In the meantime we will hope for good news 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: Terrified and looking for support and answers

Hi LisaAnn,

Welcome to the site. Sorry that you had to seek us all out and I am sorry to hear what your dad and you all are going through right now. You say that this has been a hellish few months for you all and I can see why that is. And it must be made even more frustrating when you do not know exactly what is going on with your dad.

I wish that we could answer your questions exactly but we can't I'm afraid as we are not doctors. But, we can and will give you a ton of support and help you as best as we can, so please keep coming back here and know that we are here for you.

Here is the link to the major treatment centres in the USA that Lainy talks of.

http://www.cholangiocarcinoma.org/major … enters.htm

I think that they would be able to review your dads scans if you sent them there, and if I am wrong about that then hopefully someone will correct me on that. Also, this thread may be of use to you as well. It is a list of treament centres/physicians that was created by the members here who have experiences to share of that centre or doctor. I hope it will be of use to you.

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

Please let us know how things go with your dad and I hope that you can get his scans seen by someone who has great experience in dealing with CC patients.

My best wishes to you and your dad,

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: Terrified and looking for support and answers

Thank you all for the kind messages of support.  Just wanted to let you know that I was able to get an email response from a Mayo doctor, Dr. Gores.  He did not say that Mayo could look at Dad's scans, but did read his history and he concurred that Dad does need this surgery one way or the other.  I wish he had agreed to look at the actual scans though.  But he was very nice in answering my email.

Re: Terrified and looking for support and answers

Lisa I am a CC survivor, I have been cancer free 3 years and 3 weeks (who's counting!) I have an amazing story to share, I keep my story and 2 other CC success stories on my FB page (Catherine Sims Dunnagan), please read they will give you HOPE. (You can also go to thetelegraph.com under christmas miracle to read mine).
My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman and Dr. Gore worked together on the Mayo transplant trial. Dr. Chapman is the most amazing man, he is the kindest, most humble doctor you will meet, he is who you want your children to grow up to be like, he is a "HERO". It also speaks volumes that a very up and coming Dr. Sonneday (who post on our site and takes care of several CC families  calls him his HERO.)
Dr. Chapman will take your phone call and has been known to say Yes when others have said no. (314-362-5376).
I am alive because of God, 2 strangers and Dr. William Chapman! (That is exactly how he would list it!)
Lots of prayers-Cathy

Re: Terrified and looking for support and answers

Hi,
Dr. Gores is the pioneer on the subject of liver and bile duct cancer research.
You should be very happy about  his response.
If you decide to ask Dr.gores to look at the scans;you can just call Mayo clinic  or fill out the form on the internet and ask to schedule an appointment with Dr. Gores ( he is a hepatologist-doctor who specialized in liver and biliary tract.).He may ask you to have a MRI and MRCP done there  to render his final analysis. If so, I will jump on the chance.
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: Terrified and looking for support and answers

Hi LisaAnn,

I'm so sorry to hear about your Dad.  My boyfriend has been diagnosed with CC, but not until he went to Cancer Treatment Centers of America.  Before that we were told that he has cancer cells in the liver, but had no idea where they were coming from.  You mentioned that your Dad doesn't want to travel, but they have such an amazing facility that he may just feel right at home.  Their staff is so nice, and supportive, they have great (Cheap) food in their cafeteria, and they are so fast at getting the testing done and starting treatment.  I probably sound like an advertisement, but after going to UC Davis and Stanford and getting little to no help, I couldn't be happier that my boyfriends mother decided to call CTCA.  Sounds like you are receiving many other great recommendations.  Just don't give up and do all you have to do to get some answers and find out exactly what is causing this!  Sending prayers your way. -Kendra