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  • #96422
    karend
    Participant

    Hello Fay!

    Although I do not want to recommend physicians, here is a link to the advisory boards (medical/clinical/scientific) for the foundation.  https://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/

    Look over the physicians and see where their home facilities are located.  You could even do a search for them on this patient board as many of these physicians (certain ones I know for sure) have been mentioned here numerous times.   There is one physician in particular from MD Anderson who is one of the top Cholangio physicians, and is on the clinical advisory board.

    Are you coming to the annual meeting this year in Salt Lake City?  If not, it should be live-streamed and you will be able to hear the latest info and research on cholangio, and see the physicians who are highly involved in caring for people with this cancer.

    -Karen

     

     

    • This reply was modified 2 years, 10 months ago by karend.
    • This reply was modified 2 years, 10 months ago by karend.
    #96408
    positivity
    Participant

    Mary,

    You do the online research first and hopefully find a few possible oncologists.  It’s true that you will know at the initial consultation whether you want to continue with the doctor.  However, you can check ahead of time whether the doctor has experience treating CC patients.  Also, this can’t be the only factor.  I chose someone who supposedly is experienced in treating CC, but when meeting, he could only offer the standard treatment of gem/cis which I did not like.  He could not provide any clinical trial options.  So if this is important, check ahead of time if the doctor is open to clinical trials and whether their facility has access.

    If the doctor is far away, is there a way you can speak by phone or contact by email first?  I know this can be difficult as they like to bill for their time, but maybe you can get a few questions answered before spending the time or money for the visit.  Think of a few questions that are important before visiting the doctor and whether that will impact you choosing them as the treatment oncologist and see whether you can have them answered in advance.

    This is a challenge for sure, but you can choose the right doctor, and don’t be afraid if you decide you need to change.  Sometimes, I felt certain doctors did not know what to offer either and they were limited with resources.  Again, have them give examples of patients treated successfully, and keep doing your research on updates for treating CC.

    #96406
    bglass
    Moderator

    Hi Positivity,

    Thank you for your thoughts on doctors.  Very helpful.

    The criteria you mention are ones in my experience that you discover as you work with a doctor.  Are there ways to evaluate these criteria before getting started with a new doctor, other than the websites that rate doctors?  What if the doctor is in a distant location?  And how have you factored expertise into the equation, given this is a rare cancer?  I ask because as a patient, I would gladly put up with Dr. Curmudgeon if such a doctor had a higher likelihood of being successful with my illness.

    Regards, Mary

    #96405
    positivity
    Participant

    Hello Fay,

    I don’t have experience with MD Anderson, but this is the criteria I have considered when visiting multiple doctors.

    1. They have to be patient and not pushy for a particular treatment while not offering alternatives.  This means one doctor was so pushy in his treatment plan and made it seem if we don’t start right away we will face poor consequences, yet mentioned there is no guarantee with any treatment working.  I don’t like pushy doctors who have nothing to offer, but one mode of treatment and aren’t realistic by looking at the individual patient and treating all patients the same.

    2. Easy communication whether calling their office, emailing them, and they being responsive and answering questions, not trying to dodge the questions or not being forthright.  Sometimes they can be negative, but if it’s realistic, so be it, but not in an effort to no longer help patient because they are at the end of stage.

    3.  Are you comfortable with them and are they listening to all your concerns or do you feel rushed like you are just another patient?  If they are rude or overly negative in a very difficult situation, then reconsider.

    4.  Find a doctor who is genuinely curious and wants to find answers or try clinical trials, not a close minded doctor.  Have him/her give examples of people they have treated with CC. Some can’t do this or not willing to give examples.

     

    Hopefully this helped as a starting point, but be open to several doctors.  Obviously there will be a team and it is not just looking for an oncologist, but a GI doctor, perhaps a radiologist or surgeon, or any other specialty doctor for any other condition you may be experiencing as well as the CC.  It’s great you are doing the research!  It is really up to you if you want to meet this doctor and judge for yourself.  You will know if you don’t want to work from her.

    #96403
    bglass
    Moderator

    Hi Fay,

    I don’t have personal experience with Dr. Schroff or MD Anderson, so cannot be of help there.

    I did want to make an observation about the reviews of doctors on the websites that do this.

    For myself, my first criterion is the doctor knows what he or she is doing, and and can keep me healthy.  My second criterion is that communication between us is adequate, e.g., the doctor listens to me, explains things sufficiently, is not impossible to get in touch with.  The doctor has to be great in the first criterion and not horrible in the second, in my personal way of thinking about this.  Each patient may view this differently.

    Looking at the review sites, the expertise of the doctor is not always commented on.   Sometimes patients get riled up over non-medical things – “we had to wait an hour” or “the billing was wrong” and then give one star because they are annoyed.  For me personally, such problems can be forgiven if the doctor is expert and is going to keep me well.

    With cancer, I would add, it also helps if the doctor practices where there is a great support system, because cancer usually demands a team approach.  At one point, a cholangio doctor was recommended to me who is part of a stand-alone gastroenterology practice that from its website seemed not to be affiliated with a major cancer center.  The individual has a terrific bio, but I wondered how it would work with no tumor board or pathology department lurking in the background.

    Best wishes that you and your mom find just the right doctor.

    Regards, Mary

    #96402
    Fay
    Participant

    Hi family,

    Why does Dr. Rachna Schroff have such awful reviews online? I was hoping to have her see my mom for another opinion. But the reviews are making me think twice – especially since this is an out of pocket expense since my mom lives in Canada. Has anyone here been a patient of hers? Please share.

    Hugs,

    Fay

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