Topic: Things You Would Like to Know About My Hospital Visit For 2nd Opinion.
Something you would like to know what I have learned as a CCA patient for 2nd opinions. 1/1/2012
1. Choose a hotel that you can walk to the hospital.(within a couple blocks or they can provide rides .)
2. Try to pre- arrange the time of your tests(labs, MRI etc.) as close to each other as possible; especially those tests that need fasting; have a couple hours of rest before you see the specialists so you are not tired and forget the questions you want to asked; or do all the tests on the first day and see the doctors the next day. This way you can maximize the benefits of 2nd opinion consultation.
3. Type your questions on paper and give him a copy so he can answer each one by one; you should also have a copy on hand and if you don't understand what he/she said. ask them again. Most doctors over 50 years old prefer no recording, so make sure you ask first.
4. For CCA patients ,seeing a GI specialist who specialized in the liver and biliary system--a hepatologist FIRST is the best bet in my judgement even if you do know where to start. He can confirm a correct diagnosis first and refer you to surgical, medical oncology and radiation oncology for 2nd opinions if needed therefore you will not waste your time on other consultations first.
5. You need to bring along a caregiver to help you; this is a MUST even you think you can do it all.
6. At the end, make sure you get all the copies of the tests report and Scan disk for you OWN record; they will mail reports and scan disc, pathology slides back to your hospital and doctor too.
7. Do not get too down or too excited when you hear the results. Have a safe trip home first.
8. Chemo sensitivity report is of no use to medical oncology yet due to lack of PROVEN value-a bit surprise to me from the mouth of an oncology expert I consulted with.
9. mTOR and AKt are among the pathways that look promising in research for CCA patients for new Targeted drugs development at this time.
10. Sorafenib- a multi-pathway targeted agent may be of value for CCA patients.
11. In general, Gem/Cis is on the top of the list to start for CCA patients unless clinical trial are suggested; GEMOX is ok if you can't tolerate Gem/Cis. Xeloda(capecitabine) by mouth twice daily for up to 6 month for recently resected patients is appropriate. if tumor recur after Xeloda treatment failed; Gem/Cis is the next step.
12. Finally ,if you are only allowed ONE consultation or 2nd opinion; in my opinion, the hepatologist consult is more worthwhile than oncologist consult for 2nd opinion. I think most of the local oncologists doing a good job at choosing the appropriate chemo treatment since the choices are very limited for CCA patients unless clinical trial is on the top of your wishing list.