Guidance – Bile Duct Cancer

I just wanted to say that I actually had TWO needle biopsies, three weeks apart. The first time the doctor (who I immediately FIRED) didn’t even tell the radiologist that I had a tumor and when he saw it, he went to my husband and said “Do you realize that your wife has a tumor???” My husband told him “Yes, that’s why we are here” but since he had not been told about it, he did everything he could to AVOID it. Therefore, three weeks later, back I go for a biopsy of the actual tumor. I think I was in such an emotional state, it didn’t even register what the first idiot doctor did, but I eventually found my way to docs that actually cared, and today, I am almost 3 years cancer free.

I have NO DOUBT that seeding into the abdomen CAN happen after a needle biopsy, but my doctor wanted to know for sure, and that was the only sure way to find out. And I trusted him (the second doc, not the first, who was an idiot). And I wanted to know what I was up against.

That said, I know NOTHING about transplant protocol, and if it meant I would be disqualified from the program, I would seriously have to think about whether it was worth the risk.

Take care,
Sue

I found this in one of Ashley’s posts:

The only setback we had so far is that when they did the biopsy the beginning of September (the one that diagnosed the bile duct cancer), the doctors at MUSC used a needle and went from outside my skin into the liver to get the samples. Normally that type of biopsy would automatically disqualify me for the liver transplant because when they pulled the needle out cancer cells could have seeded in my abdomen and skin. Dr. Harnois had already been aware of this and had spoken to several members of the review board and they said they would consider my case. With this information she felt that there was not a problem with going forward with the evaluation for now. They will probably do some extra radiation in that area to be extra safe before the transplant. The problem is that with a liver transplant they have to put me on medicine during and after the transplant to lower my immune system so low that the body won

Interesting that you brought that up. I don’t have the answer but, I am hoping for someone to share with us. I do recall though, at one time, someone reported that there might be a possibility of the spread of cancer, if percutaneous biopsy is performed.
Best wishes,
Marion

Hi. If you are interested in transplant we used the Mayo clinic in minesota for my mohter’s transplant. this was last fall and I do know that since last summer Mt. sinai and sloan in NYC were looking to establish a transplant protocol together ( transplant at Sinai and chemo at Sloan). DR. Marvin Schwartz at Mt Sinai would be a good contact. But if you can get to the Mayo their track record and expertise with the transplant is the best. My mother is 66 so Mayo suggested a live donor because of her age she would wait too long for a cadaver. Mayo in jacksonville, fla does not do live donors but their cadeaver wait it MUCH shorter. There are many factors to take into account. For the Mayo call and and ask for an appt with Dr. Gregory Gores or Boris Blechatz we got in in less than 2-3 weeks. The evauation takes 3-4 days as every test is re-done from scratch. IF for some reason he is not a transplant candidate and the lymph nodes are not involved, something like microspheres would be another option and is a treatment you may be able to find closer to home. If your boston doc did not mention transplant don’t lose hope – only a handful of places in the US use this protocol.

If you want to contact me I can give you more info :
AJackson0@snet.net
Wishing the best for you and your family.
ashley – Niantic, CT

OneBigFamily: See, it’s as good as gold already! We have all learned that with CC you can count on nothing. But that is really entirely wrong as our one constant is Marion. She is always here and dang if she doesn’t always make sense out of a senseless situation. Just a little thanks Marion, you deserve it, lovely lady!

OneBigFamily:

Sorry you had to find this site, but welcome to the CC family that you will find on this site. I’m also a new member. My husband Tom has CC and underwent a successful resection in June 2008, were almost 80% of his liver was taken out. We were told that he was ‘cancer free’ – No chemo, no radiation was necessary, per the VA cancer team.

On Thanksgiving 2009, Tom started turning yellow. His bilirubin level went up to 24.7 within a matter of 6 weeks. His oncologist with the VA in Iron Mountain Michigian told him to go home and get his affairs in order.

One thing that I have learned during the time since Tom’s initial diagnosis is to never take NO for an answer. We also considered Mayo Clinic but the distance away from family and friends was something that I did take into consideration and since we were in Milwaukee for three weeks for his initial surgery I wasn’t prepared to do that again.

We did drive to Marshfield Clinic in Marshfield WI and presented to the ER (that was the quickest way I could figure out how to get into an Oncologist without waiting for an appt) We were back there in two days with an appointment. We’d brought all his records with us when we went to the ER including the latest CT Scan which showed the new tumor in the remaining right biliary tree. The oncologist at Marshfield also said his new tumor was inoperable because of it’s placement. (a 2.5cm tumor smack in the middle of the right biliary tree with blood vessel involvement). She did give us a bit more hope however, and suggested a bile duct stent or external drain to help combat the excessive bile build up in his system (which was causing his yellow color) and suggested chemo and radiation.

We also went to visit his original surgeon in Milwaukee who agreed with the Marshfield oncologist. We then presented to the Vince Lombardi Cancer Clinic in Green Bay, Wi. Dr. Rhoady (Radiation) and Dr. Nancy Davis (Oncologist) are his doctors there. The plan was to get the liver stented, start radiation and chemo.

The liver stent has presented a problem (after 5 tries, he still does not have an internal stent) but now has an external drain with a collection bag. Because the bile is not flowing into the intestines they are unable to give him chemo, however they did start radiation and as of this week after about 22 radiation treatments, his bilirubin has come down 2 points (22.7) and his tumor markers have started coming down as well. Apparently the radiation is starting to work.

You need to ask many questions, get second opinoins, don’t take no for an answer, keep asking why…this is your fight, stay positive!

Good luck, prayers from Wisconsin are coming your way.

Go with God and Keep KICKIN’ that cancer.

Margaret and Tom

Hello ONEBIGFAMILY and welcome to our Big Family. Sorry you had to find us but so glad you came aboard. I don’t know where your location is but Mayo Clinic in Rochester, MN is one of the very best. When a doctor announces that nothing can be done, that is when we get in to our Advocate fight mode and start our research. We do not give up until we are totally satisfied. If you can let us know where you are located I just know you will get some valuable advise from our CC Family. Good luck and keep us posted on your progress.