Topic: Second Opinions

Good Morning!

I am currently at MD Anderson.  I am not connecting well with my doctor and am feeling like I need to know everything so I can ask all the pertinent questions to get the information from him that I need.  Just this week I was told that the cancer is in my lymph nodes and that is what makes a transplant impossible.  They are also watching a spot on my lung to be sure that it is not also cancer.  (It could just be from past bronchitis or respiratory infections which I have struggled with my entire life).  I have been seeing this doctor since May and this is the first time I've heard this!  I was floored when I finally asked him the "right" question and was given this information.  At times I feel like he thinks I'm going to die so let's not talk about being as aggressive as possible in fighting the cancer.  Currently, I am doing Gem/CIS chemotherapy every two weeks with slight success.  I realize that there are relatively few options for advanced CC but I have to know that my doctor is fighting as hard a possible with me. 

I am going to ask for a consult with another doctor at MD Anderson, Dr. Javle, who seems to take a slightly different approach.  I've seen many good comments about him here on this site.

I am also considering a second opinion from the Mayo Clinic.  Does anyone have any experience with doctors at the Mayo Clinic?  They have slightly better survival rates than MD Anderson and I was surprised to see that the GI Clinic at MD Anderson scored only 52 out of 100 on US News and World Reports.  Maybe that means really means nothing but when I'm already concerned about the level of care it makes me think twice!  (Mayo clinic scored 100/100).

Thanks for any advice anyone can offer! 
Kelly :-)

Re: Second Opinions

Kelly....I agree.  A meaningful patient relationship for doctor and patient is based on trust; one that reassures the patient while remaining honest about the diagnoses.  I have learned that lack of communication between patient and physician is one of the major issues causing the patient to be dissatisfied with his/her physician. 
Kelly, the enclosed link is lengthy, but it will provide you with member recommended physicians names and centers. http://www.cholangiocarcinoma.org/punbb … hp?id=3126
I place much value on the opinions of our members and hope that you will receive tons of answers to your questions. 
Hugs,
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: Second Opinions

Hi Kelly, I spent almost 6 years as Caretaker and advocate to my Teddy. My gut never steered me wrong. Dr. Javle is tops at MDA. Mayo, Rochester, MN is tops as well. To me the most important thing is that you trust your ONC. It's your CC, your b ody, your life and if you are not comfortable see someone else! And be strong.

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: Second Opinions

Kelly-My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I can never say enough about this man, I am alive because of God, 2 strangers and Dr. Chapman. I hope you have read my story on my FB page, it tells just how lucky I was to have been put in his care. The man has a soul,and big heart, along with the greatest doctor skills! Barnes is also #6!!
I had a spot on my lung this winter and my doctors really believed it was nothing BUT did not want to take any chances and wanted it removed and it was nothing.
Please feel free to contact me if I can help.
Lots of prayers-Cathy

Re: Second Opinions

Kelly-
I see dr. Javle at md Anderson. Have you seen him? He is awesome, and an amazing person. He is saving my life. Maybe if you haven't seen him, tell them you want to meet with him.

I have called the mayo, and really I haven't had much luck with them. They never call me back!

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Second Opinions

Sorry- I have chemo brain. Yes! Please tell them you want to meet with dr. Javle. :-) I really think you will be happy with him. Also are you getting pet or ct scans? Ask for a pet if your not getting them.
I was told I had a spot on my lungs until I got a pet at MDA, and it turned out to be nothing.
God bless.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

7 (edited by PCL1029 Thu, 13 Sep 2012 20:40:58)

Re: Second Opinions

Hi,
See Dr. Javle for 2nd opinion first on chemotherapy,if still not sure, then  go for a 2nd opinion at Mayo with Dr. Gores for GI and liver consultation if no mets to other parts of the body.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.