what questions should I ask gyno-oncologist at 1st appointment?

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So my first appointment with the gyno-oncologist has been scheduled following a suspicious mass found via TVUS on my right ovary and elevated CA125 blood test. I am also BRCA+. Both the CA125 and the TVUS will be repeated just before the appointment so we should know if things are changing at that time.

I am trying to prepare for this appointment and make a list of questions for the doctor. Does anyone have a list they made that they would be willing to share? Or, based on experience, know what they wish they'd asked?

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  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited October 2016 #2
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    So many questions

    There are so many potential questions.  If it was me, I would want to know what to expect, how the doctor thinks the situation should be addressed, what his percieved treatment advice would be.  Sometimes they recommend some chemo before they do the surgery, other times, they recommend surgery first.  Sometimes they recommend IP chemo (which is when chemo is injected directly into your abodmen for each treatment, leave it in, and then drain it) along with IV chemo, others will recommend only IV chemo.  You might ask whether there are any new treatments that are showing promise for first line treatment.  If you are not seeing someone at a teaching hospital or who attends the GOG meetings (Gynecoclogical Oncology Group) they may not be up to date on the latest research.  You might want to know how long your hospital stay will be.

    I am sure other people will have a list of questions that you might ask.  I would just say, anything that you find yourself wondering about between now and then, write it down and ask.  And make sure you tell him or her what you want, because you get to have a say in this too.

    Two things that happened at my initial appointments with new gyn/oncs, I interviewed two before deciding to hire the second one:

    1. I asked the first one how many times he had done a debulking surgery.  I had read that you want a surgeon with a lot of experience.  The first one responded that he had done 50, and I felt that was not enough to gain the experience necessary to be very, very good at it.  So, I didn't hire him.  I did hire the second one, who had 40 years experience and who worked at a teaching hospital.  I decided he had the experience I wanted.  Ironically, when I was signing the papers to be admitted for the surgery, the doctor's assistant, when I asked her whether I had to designate someone to make deicisions while I was in surgery, told me that the doctor had so much experience with this procedure and had run across so many situations that there were procedures in textbooks that had his name affiliated with them.  I was glad I picked him.

    2. When I first met my second interviewee, I explicitly told him I did not want him to discuss survival or statistics with me.  I knew that if he gave me bad news, it would impact me emotionally and probably affect my outcome.  I know this is not what everyone wants, but it is how I wanted to proceed.  Thankfully, he respected my wishes and did not share with me, what he shared with my brother immediately after my surgery; that I would never acheive remission and that I would not survive for a year.  I proved him wrong. 

    Best of luck.  

  • tealnpink
    tealnpink Member Posts: 30 Member
    edited October 2016 #3
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    I wish I ask

    I spent my first two years taking platinum based drugs.  I was told there was nothing else to do but continue taking the drugs until I could not take it anymore. I went to mdanderson for a second opinion. The first thing they did was a tumor DNA analysis.  I have a kras mutation which makes me platinum based resistant and it was er+. If a DNA test was done at the beginning i would not have wasted my time on platinum based drugs that did nothing for me and I would have been taking an estrogen blocker.  So in my cases, I wish I would have ask if he was going to order a DNA analysis.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited October 2016 #4
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    Madeline~ check out a separate post for more answers 2 your ?

    Dear Madeline_

    In reply to your post about questions you need to ask, since we talked before, I decided to put some helpful questions for you to ask on a separate topic link here:  http://csn.cancer.org/node/306192

    Many other women are asking the questions you are asking and we need to know as much as we can "going into the consultation."  You've heard the old saying, "The squeaky wheel gets the most grease", well the more we know about our own situation, the more intelligent questions we will be able to ask.  Never be afraid to ask the doctor "What does that mean?"  And ever so often, "How do you spell it?"  Don't be timid.  It's your life!  This puts your own mind at ease when you know that you and the doctor are in it "together." 

    Okay, hope your consult goes well, and that all your questions will be answered satisfactorily.

    Loretta

    Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

     

     

  • bluesmama
    bluesmama Member Posts: 125 Member
    edited October 2016 #5
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    just went through this

    i think i'm a few weeks ahead of you. i had the same situation. at this stage it's really kind of an unknown. they won't know it's cancer until surgery (it may just be benign endometriosis). i was sent to a CT scan immediately. the scan will either agree/disagree with the TVUS and will give your surgeon some clues as to what to expect when he goes in to investigate. i had a laparotomy and it turned out to be cancer and endometriosis. staging and biopsies done. a small resection of my colon too.

    ask about frozen section. it can quickly assess whether it's cancer or not but not really the type until a full pathology is done. had to wait a week for the final pathology report. and now i'm recovering while i prep for chemo/radiation. 

    what you will want to know is how experienced your doctor is. if it's cancer you want a surgeon that has an excellent reputation with staging and debulking. ask him/her how many years experience. how many surgeries. what are the options for surgery. when can they schedule you for surgery. you also want to gauge how well you get along with your doctor. my surgeon is world class in terms of skill but his social skills are a little awkward. this isn't a big deal to me but it may be to you. once you commit to each other it will be a long relationship so you want to make sure this is the right doctor. for some hospitals, it's tough to switch to a different doctor within the same hospital if you're not satisfied. you also want to find out if the hospital you are going to be a patient at has access to as much research as possible. do they have access to clinical trials? are they one of the big cancer centers or are they smaller. if smaller, are they affiliated with a larger hospital at all?

    good luck.