Topic: Mayo newsletter - Bile Duct Cancer

I 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/mc720 … 0-1010.pdf

Re: Mayo newsletter - Bile Duct Cancer

YEA!   We are getting to be known!!! Today a Mayo Newsletter tomorrow the World!

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: Mayo newsletter - Bile Duct Cancer

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!! Cathy

Re: Mayo newsletter - Bile Duct Cancer

Hi Kathy,

Thank you very much for posting this!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Mayo newsletter - Bile Duct Cancer

Interesting that the newsletter had articles about cholangiocarcinoma and trigeminal neuralgia - two things my mother had.

~Kim
my mother lost her 16 month battle with CC 9/26/10
"Mothers have as powerful an influence over the welfare of future generations as all other earthly causes combined."

Re: Mayo newsletter - Bile Duct Cancer

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, FL

Re: Mayo newsletter - Bile Duct Cancer

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

Re: Mayo newsletter - Bile Duct Cancer

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. :-)

Re: Mayo newsletter - Bile Duct Cancer

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

I'm a passenger on planet Earth and God is driving.

Re: Mayo newsletter - Bile Duct Cancer

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

Re: Mayo newsletter - Bile Duct Cancer

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.