January 18, 2010 at 6:28 pm #34726scragotsMember
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.
SueJanuary 18, 2010 at 1:19 pm #34725ashleyParticipant
Certainly do not mind if you post it! I’m so glad people are remembering this important info.
That posting below was from Brian Evan’s website. His wife Jennifer later posted out here because Brian’s bilirubin was so high and I believe a lot of you read the sad post last week that Brian had passed away.
I had also been in touch with Mt. Sinai and asked that doc about needle biopsy and his response was ” We KNOW better than that”. So please do not get a needle biopsy and understand that there are docs out there that just do not know this because they are still doing them!.
I am also aware of one other Mayo transplant patient denied last spring because of SAND size pieces of cancer that they found during staging surgery that were in line with the path the needle traveled. (www.carepages.com search BuckeyeJimmyMcPeek). Here is Jim’s posting from April 20, 2009:
“The last week has been tough, but we are a strong family and we
are going to be ok. As all of you know the cancer has spread into
the biopsy path that was conducted at Beaumont in Troy when I was
first diagnosed with the mass (tumor).”
So please make sure your doc takes other factors into account for diagnosis, CA 19-9 tumor marker over 100, FISH staining, ERCP brushings, etc.
AshleyJanuary 18, 2010 at 1:04 am #34724darlaParticipant
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 wonJanuary 18, 2010 at 12:58 am #34723darlaParticipant
I do not know this from our experiences, but have heard or read something to that affect. My husband had a needle biopsy done, however, in his case the cancer was already so advanced that he was not a candidate for a transplant. You may want to try the search function on the site and I am also sure you will also be hearing from others who may have a better answer for you. Hoping for the best for all of you.
DarlaJanuary 18, 2010 at 12:56 am #34722marionsModerator
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.
MarionJanuary 17, 2010 at 11:21 pm #34721
Thanks to everyone for their welcome notes and information.
I’ve heard through the grapevine that a percutaneous biopsy of the cancer might be an exclusion criteria for transplant. Has anyone else heard that? Is that dependent on the transplant center?
Thanks!January 17, 2010 at 6:45 pm #34720ashleyParticipant
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 :
Wishing the best for you and your family.
ashley – Niantic, CTJanuary 17, 2010 at 5:51 pm #34719gavinModerator
Welcome to the site, although I am sorry that you have to be here but glad that you have joined us. I can’t help you with your specific questions as I don’t live in America, but I wanted to join the others in welcoming you here. I hope you will come back as you will get a load of help and support.
My best wishes to you and your dad.
GavinJanuary 17, 2010 at 2:07 pm #34718lainyParticipant
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!January 17, 2010 at 6:50 am #34717marionsModerator
onebigfamily…..I would also like to welcome you to our site. Since you are in the Boston area you don’t have far to travel far for another opinion. If you so chose, you might want to contact Dr. Roger Jenkins at the Lahey Clinic.
1-781-744-2500 or, call Julie, his assistant, at 781-744-5304.
Dr. Jenkins has extensive experience with this cancer and is a well respected surgeon.
Good luck and best wishes,
MarionJanuary 17, 2010 at 3:49 am #34716mlepp0416Participant
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 TomJanuary 17, 2010 at 3:01 am #34715
Thanks to tstewart4128 and Lainy for replying so soon. This website is wonderful, and its nice to know we aren’t alone in this groping in the dark.
Our care has been in Boston so far. We are strongly considering a second opinion at the Mayo Clinic in Minnesota, particularly based on stories we have read on this site.
We have submitted an online request for an appointment, and we’ll probably call as well. Is this the best way to get into the system? Any other options?
Thanks for everyone’s help in advance.January 17, 2010 at 2:49 am #34714lainyParticipant
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.January 16, 2010 at 11:05 pm #34713tstewart4128Member
My mother was disgnosed with this in early November 2009. We were originally told that she can have surgery because none of the CT Scans showed any mets. She went to NY and consulted with Sloan Ketterin and Mt. Sinai and choose a surgeon. When he went in to do the surgery they found the cancer had spread to both sides of the liver and closed her up. From there we were told that chemo is her option right now. She decided to come back to Florida (where she lives) and we are now seeking treatment at Moffitt Cancer Center. She is on a combo of chemo Gezmer and Cisplatin and just finished her 2nd dose. Shes doing ok and holding up so far. We have an appointment with the Mayo Clinic in Florida in early Feb just to see what other treatments they might offer if the chemo does not work. Good luck with your journey. Im sorry you had to join this group but you will find strength and its a great support system on this site. Please keep us posted. God Bless!January 16, 2010 at 10:27 pm #3076
My Dad was recently diagnosed with bile duct cancer. A surgeon planned to resect it yesterday but stopped because he felt it was unresectable, with invasion of the portal vein and the hepatic artery but no lymph node involvement. There is also no evidence it has spread anywhere else by CT scan.
After the operation, the surgeon said the only other options are chemo and radiation, which, in his words, are not very effective for this type of cancer. I’ve read about other options including transplantation, and was hoping to get more information.
Can you provide some guidance? If any of you have been through this, can you shed some light? Have any of you had experience with evaluation and treatment at either the University of Michigan or at the Mayo Clinic? Are there specific doctors at either institution that you would recommend?
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