Mayo newsletter – Bile Duct Cancer
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My Mayo doctor was first and foremost hoping I would qualify for a transplant. I have a Klatskin tumor. He referred to the transplant as the cure. Unfortunately I did not quality. While I was waiting for insurance approval to have my first appointment at Mayo, my tumor grew over the protocol size. Transplant at Mayo was not a last ditch option. It was the first option researched.
Amazing that people have to aggressively persue transplant option. I am a cc survivor, due to not one but two transplants. When I was diagnosed in July 2008, transplant was the first and only option discussed. Dr. Chapman said we would discuss other options if and when I did not qualify for transplant. Transplant was not a last ditch option. Thank god I had knowlegable cutting edge doctors and hospital. Transplants should be ruled out, not an alternative treatment. I am a survivor and cancer free thanks to this treatment. Be a donor!!! Cathy
I will support Ashleys observation re: transplant. I am a Klatskin tumor / CC survivor now for over 2-1/2 years. I was probably one of the best candidates the Mayo had for the liver transplant protocol.
I am more than glad to hear that you have persued the transplant agressively. That was exactly what my wife and I did when I became a CC patient. Fortunately I was a ‘perfect candidate’ if there ever was one for the liver transplant protocol.
Good luck and keep pushing forward.
Raye
Hi Staci,
I have to disagree on your statement about Mayo chosing to resect over transplant. Mayo pioneered the transplant protocol for CC. They simply have a different ( more strict) criteria for their protocol, which I am certain does not equate to them chosing resection over transplant. The main factors making the determination are not risk/reward but rather they are dependent upon where the cancer is located, size, and metasticising. Generally they transplant for Klatskin tumors which are located in a the bifurcation of the ducts where resection is not an option. I’m so glad to hear that some NY and PA surgeons are now considering transplant after resection : -). Aggressive treatment is definitely what CC needs!
Best of luck.Ashley – daughter of 67 yr old mother who had her live donor transplant for CC 11/09 at Mayo – Minnesota.
floridamom-If you are qualified for a live donor transplant is that a partial rescect. I could not qualify for transplant till I did chemo, chemo and radiation, and surgery to make sure it hadn’t metastaside. Good luck -Cathy
what they dont tell you at Mayo is they are very timid when it comes to qualifying for the transplant. They would rather resect based on a risk/reward philosphy and will not transplant after resection if there has been any recurrence or metastasis. Mayo Jax is a 10 min drive for me but I had to go to Mt Sinai (NYC) to be cleared for a live donor liver transplant. I am 44 and as a single mom with 13 and 16 yr old sons I sought the most aggressive treatment available. Currently flying to NY every other week for custom cocktails @ NY Downtown Hospital until I get a donor qualified.
Staci
Jax, FLInteresting that the newsletter had articles about cholangiocarcinoma and trigeminal neuralgia – two things my mother had.
kathy- thanks for the post. I have posted on here many times, that I am alive only, because of a transplant (really two)! I am a cc survivor because of Barnes-Jewish Hospital and Dr. William Chapman. He is an american hero.
Go green, recycle your organs!! CathyI just received the fall 2010 “Sharing Mayo Clinic” newsletter in the mail today. The front cover is a picture of a young man who had primary sclerosing cholangitis (PSC) that progressed into cholangiocarcinoma at age 21.
Page 4 of the pdf file tells his story of a liver transplant. There is a box in the lower right hand corner of page 4 which explains a little about this “rare cancer.”
Kudos to Mayo for making our cancer better known to the public.
http://www.mayoclinic.org/mcitems/mc7200-mc7299/mc7200-1010.pdf
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