April 14, 2014 at 12:06 am #81091surfer1Participant
My husband is being seen by Dr. Colquhoun at cedars sinai in Los Angeles. We also got opinions with Dr. Selby at USC and Dr. Imagawa at UC Irvine. All are knowledgeable about cc.April 13, 2014 at 7:51 pm #81090
Dear Cholangotango, my post above says, ” I live in Phoenix and I don’t think Banner MDA here is where you want to be. I went there for a few months due to another rare cancer and they are really under the Banner Hospitals NOT like the MDA in Houston”. I did not care for the ONC, it’s just money, money, money. They did a CT Scan in Dec. of 2012. My co-pay was 200.00. 6 months later they wanted to repeat the scan and co-pay would be 850.00. Had it done at an imaging center for co-pay of 150.00. They could NOT give me a reason. This MDA is under the Banner Network here and not sure how close they follow with MDA Houston. If you want Mayo I would do the one in Minn. MDA Houston is excellent and take a look at the list of ONCs Marion gave you as they are all top notch. If you still want to come to Phoenix we have a Dr. Koep and his partner Dr. Cashman. Both are excellent. You also have some great ONCs in Los Angeles and San Diego. I would still check that list as they are all top notch!April 13, 2014 at 7:08 pm #81089marionsModerator
Judy….We have listed physicians on our Medical Advisory Committee, some are located in Southern California. It won’t hurt to consult with several experts:
Please peruse our listing:
http://www.cholangiocarcinoma.org/medic … ouncil.htm
I am hoping for others living in Southern California to come forward and share their thoughts as well.
MarionApril 13, 2014 at 3:36 pm #81088
Dear Judy, the post right above yours, Dr. Fong, one of the best! Unfortunately there are no support groups as there are not enough patients with CC even with the bigger hospitals. I tried to start one at Mayo here in Phoenix and they said we would have to join a regular Cancer group. I know there are more ONCs in the LAX area and you will be hearing about them soon, Wishing you the best!April 13, 2014 at 3:17 pm #81087judymMember
We are looking for the best recommendations for LA area doctors/centers for treatment as well. If any of you know of any CC support groups/individual therapists in LA or informal connections we could make we would be very helpful to us.March 28, 2014 at 3:02 pm #81086olympic1231Participant
I’ve been doing similar research looking for where to go for second opinions, and I found out Dr Fong from Memorial Sloan Kettering is moving to LA to City of Hope. I’ve never met him but have heard he is a wonderful surgeon that has seen a lot of cholangiocarcinoma. I imagine that he would have an opinion that would be useful even in unresectable cases.March 28, 2014 at 9:33 am #81085marionsModerator
Cholangotango…..The majority of physicians welcome educated patients and that requires (in my opinion) second, third or more professional opinions. The Cholangiocarcinoma Foundation Medical Advisory Committee is comprised of some of the most notable physicians treating this cancer. You might want to take a look:
MarionMarch 28, 2014 at 7:17 am #81084cholangotangoParticipant
Thanks for being so welcoming, and for the advice.
You mentioned not recommending Banner MDA… curious why. Is it the level of expertise, the open mindedness of the doctors, the facility itself or its technology. More detail would be appreciated.
To be specific, I was planning to have dad see Dr. Dayyani (Banner MDA), then Dr Ramanathan at the Virginia G. Piper Cancer Center. The Mayo clinic in AZ wanted to charge 5K to Medicare just for a 45 min consultation which we felt was just wrong. Since dad isn’t a candidate for transplantation I didn’t think there was anything to gain by going there.
If there is any other Dr. or facility in the Phoenix area you might recommend or West of there (as mentioned, we’re in Los Angeles) please let me know.March 28, 2014 at 2:10 am #81083jathy1125Participant
Hi Welcome and sorry you had to find us. I am a CC survivor and know how important second and third opinions are and how they can and do change your treatment. My miracle worker is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. and because of him I was given HOPE right from the start and never needed another opinion. I know that sounds far, my story has brought 4 people from FL. SD. CT. who with one phone call were given HOPE and came to St. Louis and had there diagnose changed for the better. Dr. Javle at MD Anderson, Dr. Fong at Cleveland Clinic, Dr. Kato in New York are all doctors who have had great success treating our cancer. Please feel free to contact me if I can help
Lots of prayers for HOPE
CathyMarch 28, 2014 at 1:23 am #81082
Hi there and welcome to our fabulous family and as always sorry you had to join us. You are doing a wonderful job of being a care taker and advocate for your Dad. We do encourage 2nd and 3rd opinions, glad to hear you are bending that way. I live in Phoenix and I don’t think Banner MDA here is where you want to be. I went there for a few months due to another rare cancer and they are really under the Banner Hospitals NOT like the MDA in Houston. I am not that familiar with Hospitals in Calif. but I know you will get lots of answers here of possible ONCs. If you decide on an MDA I would do Houston. Best of luck to you and please keep us posted on Dad’s progress, you have come to the best place to be.March 28, 2014 at 12:40 am #9728cholangotangoParticipant
My dad is currently being treated at UCLA (1st line treatment). CT scan revealed Gem/Cis after 8 weeks partially responded (main tumor unchanged, lymph node is larger). It’s still early for dad, he doesn’t really feel sick yet.
The oncologist seeing him unfortunately appears to be interested in the sound of his voice than feedback or god forbid, questions that might challenge his “infallible” wisdom and doesn’t care to listen to anything I (as dad’s advocate) have to say (how dare I speak, I’m not an oncologist). He’s even been resistant to genetic profiling from Foundation, claiming it’s only useful for research when many other oncologist would disagree….So I suggested my dad get a 2nd and 3rd opinion before 2nd line treatment.
We already plan to go to the MD Anderson arm of oncology in Arizona to see a specialist, but since we do live in Los Angeles, does anyone know any “think outside the box” cholangio specialist in the area ?
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