UPDATE ON MY MOM

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  • jzona
    jzona Member Posts: 14
    #22
    Beebster said:

    Mutations/Molecular Analyses will be key to treatment

    Hi Jzona,

    It's difficult to offer questions to ask at this point; your onc is assessing the situation, and making a determination. One big question: how is he making the determination? Why this treatment and not another? How long will this treatment continue, and what comes next? When will a complete tumor profile be done (if it hasn't been done already)? Mutations are critical determinants in treatment pathways. For example, if your mom turns out not to be estrogen/progesterone positive, that means hormone therapy is less likely.

    One source to familiarize yourself in advance for treatment options he might recommend  would be the NCCN Guidelines website. You have to establish an account, but once you do (it is free), you have access to NCCN Guidelines Version 1.2017 for Uterine Neoplasms. https://www.nccn.org/professionals/physician_gls/f_guidelines.asp  

    NCCN is the likely source for the "protocol" your mom's first oncologist (using the term loosely since it is clear this person is no oncologist) said she followed.

    The guideline is a 94-page PDF, recently updated (April 2017) to include "Evidence Blocks" that assign numerical ratings for the efficacy, saftey, quality of evidence, consistency of evidence and affordability of various treatment options. I draw your attention to pages 5 (explanation of evidence blocks), 15-16 (therapy for relapse), and 28-29 (evidence blocks for systemic and recurrent therapy).

    Good luck - I am interested to learn the follow-up for a grade 2. (I am grade 3 - nasty stuff!) 

    Beebster

     

     

    Thank you so much.  My mom is

    Thank you so much.  My mom is grade 3 too.  I typed incorrectly in my original post.  She was diagnosed stage 1/2, grade 3 after surgery.  Tomorrow is her appointment.  We are very anxious and nervous.

  • daylady
    daylady Member Posts: 122
    #23
    Editgrl said:

    If a second opinion were ever warranted, this is it!

    jzona, welcome to the board.  I am sorry that you have to be here, but there is a wealth of information here from women who have been through just about everything possible with this disease.

    It is true that uterine cancer cannot be properly staged until after surgery, and it is not uncommon to have both the stage and/or grade changed afterwards.  However, I am a little surprised that there were only 3 rounds of carboplatin/taxol... usually there are six.  Perhaps your mom's kidney/liver disease played into that decision.  What kind of radiation did your mom undergo?  Internal or external?

    In any case, if your mom is feeling healthy and strong, what the heck is your doctor doing recommending hospice?  Frankly, I'm not sure hospice would even consider her!

    There are lots of other things to try and I am hoping that the second opinion you get is a lot more hopeful and helpful than what you have received so far. It sounds to me like your mom needs a new oncologist. When will you receive the results from the tumor board?  Was this at a cancer center?  

     

    Agreed!

    This doers NOT sound like a Hospice case, it sounds like  you need a different oncologist!  Also, I am not impressed with anyone who says they followed "proper protocol"  because with cancer there very often isn't one.  You need someone who thinks outside the box. Good luck! - Helen

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