Inoperable tumor in the bile duct
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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
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.
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,
MarionThanks 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,
MarionPercy…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
MarionHi,
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.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!!!!
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.
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-CathyCathy,
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
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-CathyThank 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.
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.
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
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
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