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  • questions for the doctor on Friday

    Posted by RysMomKB on May 4, 2011 at 5:52 pm

    My son has an appointment with the urologic oncologist/surgeon this coming Friday. This is the post op from the last cystoscopy w/biopsies as well as where he will be going over everything that will be happening between now and the RC on June 2. We have compiled a short list of questions, but I am sure we are missing tons of stuff. Anyone have MUST ASK questions for the doctor?

    billm replied 13 years, 2 months ago 4 Members · 5 Replies
  • 5 Replies
  • billm

    Member
    May 6, 2011 at 4:37 am

    Hi RysMomKB,

    I really do agree with Pat on getting the best, and travel wise USC Norris is close considering the expertise and experience they have to offer.

    For questions; is nerve sparing part of the surgery, any of the pathology show the P53 gene, options once surgery is started and the chance changes have to made and what will they be, how many RC’s to date, and a willingness to let your son talk to any past patients to get an idea of the patient experience using him as a doctor. Ideally the second and third opinions let you interview to decide which one to hire for the job much like a job interview. I would put how many RC’s and testing for the P53 gene testing at the top.

    This is a one shot deal, so just be sure that you do your home work.

    Bill


    5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
    11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
    12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
    7.26.12 Final scans showed no tumor or no metabolic response10.18.12 Wife leaves, now a single dad
    10.31.12 New scans show metastic return to liver 2.4.13 New scans for treatment, no other sites found
    2.20.13 New chemo regiment started, will run at least 12 weeks
  • Guest
    May 6, 2011 at 3:40 am

    OK.this is my last ditch effort and i’ll shut up. There are 2 resources that can help you with decisions. One for hospitals which is US World and News Report Best Hospitals for Cancer and Urology…..and Castleconnoly.com which lists the best docs in the US by thier expertise. There are NO urologists listed for San Diego…there is one oncologist in San Diego who is an oncologist who is mainly interested in pallative care Dr. Charles Van Gunten. Thats it.
    But if you go on CastleConnolly.com and type in Urology in Los Angeles you’ll see a slew of top ones at USC/Norris. In US World and News Report USC/Norris is #16 in Urology. They don’t have a section for bladder cancer…i wish they did as they would be in the top #3 for that.
    I’m a mom too. My son had testicular cancer at 29 and i didn’t know a thing about it. I found that Indiana University discovered the cure for it and no ifs,ands, or buts about it thats where he was going. Good enough for Lance Armstrong ..good enough for my son. It saved his life. Its one cancer that can be cured but in the wrong hands it sure can be botched up.
    ok..thats my rant…i’m quitting now.
    pat

  • Herb

    Member
    May 6, 2011 at 3:20 am

    RysMom:

    Again as an old Padre and recent RC questions have been suggested to you more wise that I could give: I give what I have tried to due to the best of my faith and ability; I pray that God gives you the knowledge that your love and strength will continue to be with your son and that your anxious thoughts will be calmed. I will always remember the eyes of my wife and my son as they worried and loved me — I know it was hard for them but they did make all the difference in the world and so will you.

    Take Care,

    Herb†


    Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50’s.
  • RysMomKB

    Member
    May 5, 2011 at 12:17 am

    Pat, thank you for replying. We have had a second opinion and our second opinion doc [a very well known oncologist] said he should stay where he is. After the posts about other doctors, I asked the 2nd opinion guy the specific question about trying to get into Norris or any other place that might be better, especially given that Ryan is so young.

    I appreciate the questions to ask the doctor on Friday. Please don’t think I am not respecting your, or anyone else’s posts on here. I have great respect for all of you since you have been down this road and we haven’t.

  • Guest
    May 4, 2011 at 11:40 pm

    So i take it that you are not going for a second opinion with some of the top bladder cancer specialists in the country at USC/Norris?
    Questions:
    1. How many cystectomys have you done
    2. How many different kinds of diversions can you do?
    3. How many lymph nodes will you remove?
    4. Are you equipped to determine P53 gene
    5. How long will the surgery be
    6. Do you do nerve sparing?
    7. Are you doing open or robotic? If Robotic how many have you done robotically. (Hint..if less than 50 he’s still practicing)

    I still think you are making a mistake not getting the second opinion. He’s very young and will have to hopefully live with this for a long time. You do not want any amateurs here.
    pat

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