Topic: Inoperable tumor in the bile duct

Hello everyone. My dad has been consulting with his PCP, a gastro specialist, and now an oncology surgeon for the past month. He presented with jaundice on May 19, 2011, and has had an ERCP, MRCP, and CT scan. The surgeon at University of Chicago has not yet had an opportunity to present my dad's case to the tumor board, but is saying that this tumor is likely unresectable.

As you can imagine, we are devastated by this news, but I am trying to keep in high spirits so my dad does not get defeated by this disease.

As of right now, the surgeon is ordering another ERCP to get a biopsy to confirm that this is cancer, but everybody is treating it as CC. My dad is 59, with diabetes, but is otherwise quite strong. This morning he had abdominal pains and does not want to eat today, but I told him that he has to! Once they can confirm what type of tumor it is, they can put together some treatment options for him.

Right now, I'm wondering if anybody has had any success recently with Cyberknife? The tumor has invaded his portal vein and is about 4.5 cm.

What should I expect? How is this cancer going to affect my dad? Now that surgery has been ruled out, my biggest concern is making sure that my dad does not have too much pain as he fights this. AND WE WILL FIGHT IT.

I have an 18-month-old son at home, and he lights up whenever he sees his grandfather. I truly believe that my dad was born to be Carter's grandfather, and I just can't imagine that he won't be around to see him grow up...

Thanks for letting me share,

Charlene

Re: Inoperable tumor in the bile duct

Dear Charlene, welcome to our wonderful family but sorry you had to join us.
First and foremost we are very strong believers in 2nd and 3rd and more opinions if needed. All you need do is gather all Dad's records and send them to another place that may be more knowledgeable on treating CC like Mayo, Rochester MN. I don't understand the remark by the Doctor that he has not had an opportunity to present your Dad's case to the Board. Is he waiting for an invitation? (Sorry)
About eating....CC really throws off the digestive system let alone the upset that your dad is feeling now. If Dad is not feeling hungry try a substitute like Carnation Instant Breakfast. My husband loved them and I would blend them with a banana or fruit. One envelope takes the place of any meal. Small meals work best and comfort type foods.
Honestly once a diagnosis is made and a treatment begins you will all not feel so scared and the fright willl turn to fight. Stay strong and have an upbeat attitude as that is really the best RX. Please keep us posted.
P.S.  Cyber Knife    My husband had C.K. and it is a miracle. The tumor must be under 7 cm and there can be no metasis anywhere. Also it depends on the location of the tumor but it is truly awesome. You can google all about it. Remember that knowledge is powerful and the best tool in fighting CC.

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: Inoperable tumor in the bile duct

Thanks, Lainy.

Although this was  my first post, I have been frequenting your site for a few weeks now. I just want to say thank you for making this website available, and to all the many people who have shared their experiences with all of us out there.

We continue to pray and thank you for your words of support!

On my way to the grocery store to pick up some Carnation Instant Breakfast now...

smile

Re: Inoperable tumor in the bile duct

You are a fast learner!!!!!!!!!   smile:)   Saym I live inPhoenix but lived for 35 years in that suburb  of Chicago called, Milwaukee!  Teddy loved the Vanilla with a banana blended in.

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: Inoperable tumor in the bile duct

One more question for those of you out there reading this:

My dad has been on sick leave from work since his first ERCP in early June. Any thoughts on going back to work or just going on long term disability? Part of me thinks that work might take his mind off of things, as he is currently at home all day long with nothing to do but think about all of this. But another part of me knows how stressful work is for him and how much he dislikes going to work in general.

Also, I was thinking that maybe exercise would be good for him... Maybe getting up and walking around the track a few times in the morning... Might rejuvenate him and give him more energy.

How has CC affected your work life, if you are still working with CC? Does anybody recommend light to moderate exercise? I'm just concerned that it would add to his already sudden weight loss...

Thanks in advance for your input!

Charlene

Re: Inoperable tumor in the bile duct

Hello Charlene...a warm welcome from me also.  As Sara mentioned in her interview at ASCO (hey, we were in Chicago) the community (each and everyone visiting this site) contributed to the success of the discussion board.  Therefore, thanks for joining in.
Following the meeting with specialists in order to gather multidisiplinary opinions your Dad's physician will be able to convey a clearer picture of how he feels you may want to proceed with the available treatments.  As Lainy has mentioned you may want to make sure to retain copies of everything pertaining to your Dad's disease.  Patients are entitled to all medical records.
Hopefully, your Dad will be able to eat a bit more today. Although, diabetic there has to be something you can entice him with.   I assume your Dad's pain will subside and is related to the previous procedures. 
Again, I am glad that you have found us and please, stay in touch.  We care.
All my best wishes,
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: Inoperable tumor in the bile duct

My own personal opinion is that we should do what our bodies allow us to do. CC takes so much of one's strength to fight I would want to save my strength and not push. The doctor had told Teddy to take small walks. As he would feel he could increase his distance he could do that on his own. By all means if he is up to work he should. Of course if he dislikes what he does that could be another story. Patients all seem to adjust to what they feel they can do. Everyone reacts so different to CC there are no rights and wrongs. It's a lot of hunt and peck as what works for one may not work for another. Perhaps a small walk here and there for starters.

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: Inoperable tumor in the bile duct

Charlene-Welcome and sorry you had to find us. I am a CC survivor. My CC was inoperable and involved my portal vein. My miracle happenned because of a transplant. Lainy's advice on another opinion is a great idea. I was lucky to be put in the immediate care of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Barnes is considerd a CC center and Dr.Chapman is one (or I think the best) the best in the treatment of CC. Please google him and read my story at thetelegraph.com under christmas miracle. There is hope.
Your dad will qualify for disability but you can't apply till 5 months after diagnose. (Check with SS office on exact time period). My battle with CC required a lot of rest, he needs to save his strength for treatments.
Lots of prayers-Cathy

Re: Inoperable tumor in the bile duct

Charlene,

About work:  Added stress is not good for someone with cancer, but it's really what your dad wants to do.

I loved my job but applied for SS disability within two weeks of my official diagnosis, unresectable bile duct cancer.  I was approved in just two weeks after my appointment with the ss office.  It seems bile duct cancer has a special classification. 

It takes 5 months before you can start collecting SS disability benefits.  This is usually counted from the last day you were able to work (in your dad's case it would be early June), as long as he has not gone into work.

Some company's have long term disability policies that start when your work short term disability ends - which can get a person through until SS disability starts.

There is also a Ticket to Work Program available to those on social security, if they become able to work again.

If your dad wants to go on disability, he should make an appointment with the social security office as soon as he receives an official diagnosis.  I found it helped to have all of what I could filled out online before the appointment.

http://www.ssa.gov/pubs/10029.html

Take care.
God bless.

Kathy

10 (edited by Jim Wilde Wed, 29 Jun 2011 18:46:14)

Re: Inoperable tumor in the bile duct

Charlene, I would be actively seeking alternative opinions on surgery and for the short term forget the going back to work thing, assuming the U of C opinion is not positive.  Surgery is the only known cure for cc, time is not your friend, and you need to not get too focused on one opinion.  There will be plenty of time later to think about your dad's work.  Focus now on getting well and whatever that may take.  Believe me, in the short term, that's  all consuming, at least it was for me and I only saw one surgeon, but was fully prepared to go anywhere, if necessary.

I had a wonderful lady cardiologist who made sure things really moved at a brisk pace, and it was never quick enough to suit her.  She's one very special person in my life.  She had to lobby the surgeon to take me as a surgical patient BC I have a number a serious cardiac issues, and in fact had several events during the 12 hour resection.  It's now over two years from surgery and I'm still clean.

Good luck on your quest.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Inoperable tumor in the bile duct

Thank you everyone for the kind words and support. Cathy, thank you so much for sharing your story with me. I have to say, I was brought to tears reading that article on you, and I am so happy that you were able to see your daughter graduate from college!

My dad's stomach seems to be feeling better already, and he was able to eat dinner tonight without any problems.  As for physical activity, it is more a matter of my dad wanting to be physically active.  Before he became ill, he was exercising every night on his stationary bicycle, and has said that it would be therapeutic for him.

Here is my question about getting a second opinion: My parents are on Blue Cross Blue Shield HMO insurance, and it was difficult even getting a referral to this U of C surgeon. If I were to get a second opinion, would the insurance make it hard for me? For example, if I were to try and contact Dr. Chapman in St. Louis, or Cyberknife Chicago, would we be forced to pay out-of-pocket and get reimbursed?

I am trying to do all of this stuff for my mom and dad so they don't have to worry about it, but it sometimes gets overwhelming and I don't know where to start. Like Jim said, time is not my friend, and I don't want insurance issues to get in the way of helping my dad get well.

Re: Inoperable tumor in the bile duct

I have private insurance through Blue Cross/Blue Shield and I was approved for my care. I would start by calling the toll free number on insurance card for member benefits. I can't believe they wouldn't cover a doctor appointment, which is all you need now to know your options. When you are accepted into a trial/treatment your doctor office will make sure you are covered, that was one of my criteria to be accepted into transplant trial.
Lots of prayers-Cathy

Re: Inoperable tumor in the bile duct

Cathy,

I have HMO policies and need to get referrals to Mayo, where I am treated. My private policy is through Blue Cross Blue Shield.  They have been wonderful.  My secondary policy (husband's) through United Health Care has been very challenging.  Stall and deny seems to be there policy with me, even though it's a secondary policy and they've only have had to pay $10 co-pays for office visits.  They really fight to give me any coverage at Mayo and have even actually lied to me.  It's been an ongoing struggle every time I've needed a new referral.

On another subject, Mayo wanted me to be able to have a liver transplant but I did not meet the protocol.  In the month it took for insurance approval to get a second opinion at Mayo, my tumor doubled in size.   That was the only thing that stopped the transplant.  We never know about "what ifs" though and how things would have turned out. 

I'm very happy you were able to have your transplant and glad you share your good news with others so they know about this possible option.  For me it wasn't meant to be, but I have faith that the plan for me has been just as it should and I am very blessed to feel so well.

Kathy

14 (edited by jathy1125 Thu, 30 Jun 2011 10:25:58)

Re: Inoperable tumor in the bile duct

Kathy-Love your name. I am sorry you didn't qualify for transplant. I am kind of curious about you being disqualified because of size. I was told that they didn't care if tumor grew (which they  expected to happen) just that it didn't metasize. I am not the doctor though and Mayo is one of our best options for CC.
Lots of prayers for you-Cathy

Re: Inoperable tumor in the bile duct

The problem is that since May, I feel like we've been in limbo this whole time. After the first ERCP in June, the gastro specialist was the first to mention the word cholangiocarcinoma, but I don 't think we've gotten an "official" diagnosis yet.  Everybody is treating this as cancer, but we have yet to meet with an oncologist. The surgeon ordered another ERCP to confirm it is an adenocarcinoma, so I'm wondering if after they get the results of the biopsy, they will tell us it is cancer.

As Jim said, time is not our friend, and I feel like everything is taking soooo long.

Re: Inoperable tumor in the bile duct

Me thinks a little dynamite needs to be lit under these doctors!!! Charlene, honestly, once a diagnosis is given and a plan for treatment is set in place your fright will turn to fight and that is much better than being scared and not knowing! Perhaps some calls to the ONC!!!!

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: Inoperable tumor in the bile duct

Hi,
If your need hepatobiliary surgical consultation in the Chicago area,
You can try my surgeon,Dr.John Brems 224-783-5500;or his personal nurse Holly at 630-715-7253.
He is a professor in surgery at Loyola;He performed over 700 liver transplants and over 1000 liver and pancreatic resections;soft spoken and above all respected by his GI peers.
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: Inoperable tumor in the bile duct

Percy...you kept your secret well.  I don't remember you talking about the upcoming resection. Did you appear tired?  Only after walking a mile in the intense Chicago heat did I feel that you looked a bit weary. 
Sure am glad to see you back on this site.
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: Inoperable tumor in the bile duct

Thanks Percy......After visiting my Mom on the Mosel river Now I am now back at my sister's in Cologne, a city famous for the Cathredale.  In fact, at one time it (long time ago) the Romans designated it as the "second" Rome. 
http://www.koelner-dom.de/index.php?id=19167
Interestingly enough proposed new building generally; discover artifacts during excavations causing the process to stop until findings are archived. 
Interesting when visiting Europe passed time takes on a different dimension as History includes thousand of years integrated in to the modern world. 
All my best wishes,
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: Inoperable tumor in the bile duct

Oh, forgot to mention the beer.  Not a big drinker, but love Schuss (the light Cologne beer with an added shot of malt.)
Take care,
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: Inoperable tumor in the bile duct

Dad had his second ERCP today. Had a great technician! She was very caring and treated my dad as if he were her own parent. Dad was also scheduled to have a needle biopsy done today in order to confirm the type of cancer cell, but thanks to the technician's advice, we did not allow that to happen.

As you already know, the surgeon at U of C has decided that my dad is not resectable and has chosen not to operate on his tumor. Obviously, we were discouraged. This week, he was able to present my dad's case to the tumor board, where it was also presented to the transplantation team. The transplantation team also declined to take on my dad's case. They did, however, indicate that Mayo in Rochester would be our best hope, due to their liver transplant protocol for treating CC.

The reason I am posting this is to share some information that I was not aware of prior to Dad's ERCP and endoscopic ultrasound: Apparently, if the technician had done a needle biopsy, it may preclude my dad from being a candidate for liver transplantation. The reason behind this is that when a needle is inserted to remove cells for a biopsy, some doctors at Mayo fear that some of the cells may be released inside different layers of tissue on its way out, thus possibly spreading the cancer cells and precluding my dad from being a transplant candidate at Mayo. Obviously, that is pure speculation, and I have not done further research on this yet, as we had a very long day at the hospital, but I just thought I'd post this on here to get your points of view.

Additionally, the surgeon, after presenting to the tumor board, would have recommended that the technician replace my dad's plastic stent with a metal one, again precluding him from candidacy.

I'm not saying that Dad definitely is or is not a candidate for transplantation, or that even if we go to Mayo for the second opinion that he will opt for the surgery, but the fact that either the needle biopsy or the metal stent could have ruined my dad's chances at even TRYING to see if surgery is possible... IT MAKES ME LIVID.

He is home now, we are monitoring his temp and making sure he gets plenty of rest to recover from the ERCP, but I wanted to post this as a warning to anybody out there who may be getting a needle biopsy to confirm cancer... I am just so grateful for the doctor who shared this information with me and my family so we could make an INFORMED decision before completely dashing our chances for surgery.

Re: Inoperable tumor in the bile duct

Many good wishes are coming your Dad's way for an uneventful recuperation.   Rarely do we see on this site any complications following an ERCP and if we do then it might be cholangitis which responds well to antibiotics. But again this happens not very often. Keeping a close eye on his temperature will assure you to catch it quickly.

Thank you for bringing up the issue of liver biopsy and the following exclusion from possible liver transplantation.  This is such crucial information and yet too often physicians neglect to pass it on to their patients.  In fact your re-posting this in the

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