Topic: My trip to Mayo

Hello everyone.  For those of you who don't know me, I am a 31yo female who has intrahepatic cholangiocarcinoma. I received a liver resection in May at University of Pittsburgh.  They removed the whole tumor, one margin was close at 2mm and I had negative lymph nodes. I received 3 cycles of Gemzar/Cisplatin at Oregon Health and Science.  (I live in Oregon) And the next step is to start 6 wks of chemo radiation with Xeloda.  It seems adjuvant therapy is debated in a case like mine so off I went to Mayo for some words of wisdom. I'm not really sure what I was expecting there ( a magic wand perhaps) I met with a medical oncologist and they agreed with the Gem/Cis combo, said it is the combo that has at least shown some success in treating CC. They called a radiation oncologist also and said they are not typically recommending adjuvant radiation for a R0 resection but understood why OHSU recommended it and did not disagree with proceeding. They also said OHSU is a good place to get radiation. So that's it.  I went to OHSU today and got mapped for radiation.
Just my observation, Mayo is the most organized medical center I have ever seen!  I had my records and scans sent there prior to going and they were able to recite my medical history just as well as I can.  It was super impressive. Also, there was no rushing at all. Both the nurse practitioner and oncologist sat and spoke with me for an hour, with no attempt to leave whatsoever. I actually had to dismiss them! I have never been treated so well and I wish all centers would practice this way.
So, that's that. I hope this post is helpful to someone. Take care and best wishes!

Susie

Re: My trip to Mayo

That is wonderful that you had been taken such good care of.  Best wishes to you for an easy treatment, and quick recovery.

Re: My trip to Mayo

Sounds good, Susie, you are off and running! Feel like a road map, do ya? I am wishing you the best of luck on the radiation and please let us know how you are doing with the treatments.

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: My trip to Mayo

Oh, I forgot to mention, I learned at Mayo that there is a patient who has metastatic CC but has been living with it for 10 years!!!

Re: My trip to Mayo

Susie....such great news, congratulations.  Susie, pat yourself on the shoulder because you are the perfect patient.  You have done your homework and have made informed decisions.  Thanks also for passing on the information about the 10 year CC survivor.  We know that they are out there and wish for some of them to join our site.  We revel in the good fortune of others.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My trip to Mayo

Hi Susie,

Great news and thanks so much for sharing this with us all. I hope that your radiation goes well and I wish you every success with that. And please let is know how you get on.

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: My trip to Mayo

Hi Susie !

Thank you very much for your post.
The OHSU people seem to be on the ball as well.

Would you mind telling me which Mayo Clinic did you go to and also
the name of the Oncologist?

I had a resection done 20 months ago with a close margin in one spot.
And one lymph node involved.

I had 8 cycles ( 6 months) of adjuvant Gemzar/Xeloda.

I literally begged them to do Radiation but was refused.

I am so very happy that you were impressed by your consultation.

Best wishes to you,

Lesley