Standard of Care?

2»

Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited July 2014

    Don't you see your Dr before infusions?  I saw Dr T before each A/C (every 2 weeks) and saw him every other week on Taxol (weekly).

    · Share on FacebookShare on Twitter
  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2014

    Me too. I think you need to go to a different place if you don't. They sound all screwed up!

    · Share on FacebookShare on Twitter
  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 128
    edited July 2014

    Hi all,

    Brookside - you crack me up!  Yes, I realize that I'm being a bit of an alarmist patient - it seems that every ball they drop makes me more and more pyscho (more than I am already...).  

    Finally got a phone call back from my MO today (yes, I guess she finally realized that I needed to talk to her....LOL).  We agreed to discontinue chemo - although this time she said that she didn't tell me the absolute number of the advantage of chemo because she says that they aren't really valid on the oncotype because NO ONE knows until the new study comes out next year.  So - I guess the oncatype folks are pulling number out of a hat?  LOL.  I'm at least having a sense of humor about all of this.  This chickadee is nice enough but is a real research queen and isn't willing to give kind of an opinion without it (fair enough).  Not something that us psycho patients need or want.  Oh well.  

    So - I'm going to pretend that the oncatype folks are somewhat right - and use my ruler on the graph and see the 3% difference and pull the plug on chemo.  Please - I don't want any of you saying - you have such beautiful kids, you should soldier through it.  I know my body and I seriously was on the verge of something not good - it wasn't just "chemo pains".  And I'm not a wimp....  It's a wrap. 

    Of course, now I'm hoping that the study that comes out next year confirms my decision - but if not, I know I won't second guess myself (I don't tend to do that after the fact - just in the middle of a decision, thank god). 

    Thanks everyone for letting me vent.  I realize that there was incompetence but I also think I was getting psycho about it - when I just should have said to myself - so they are incompetent - what are you going to do about it?  It is what it is.  

    The one good thing about the conversation with my maybe still MO is that she completely agreed that the radiation and AIs are the most important thing to do - and that she WILL get me through them.  That was music to my ears.

    Thanks all!

    Deb

    · Share on FacebookShare on Twitter
  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 128
    edited July 2014

    OK - I forgot to mention my latest "psycho" episode - sometime I do think I'm in a Twilight movie.

    Talked to MO - agreed to pull the plug on chemo.  She encouraged me to start on radiation asap.  Call radiation - a resident said that they like to wait a month after chemo.  I told her that I only did one round - she said that it probably doesn't matter.  I said "well, I was hoping to finish and go visit a friend at the end of August.

    And then.......drum roll......she said that they are closing down until October because they are getting a new machine and they need to calibrate it.  Now - I met with the dolts (love that word Brookside) in May/June and they never mentioned this little tidbit.  I quite liked the office and it was close to home (last time I had to schelp across the Golden Gate Bridge every day for 6 weeks (OK - the view was nice....but still).

    So - sigh, I told the resident that I'd be
    glad to wait for the new machine near me. She said it won't be
    operational until October because they have to calibrate it. I guess
    what I don't understand is why it was OK for me to wait for radiation
    until November if I finished all chemo sessions - but not until Oct. if
    I'm not? Strange.

    So - I get a bit irritated on the phone and said "well - it would have been nice to know that when I met with you".  Silence.  Then we made an appointment to meet next Wed. - so Brookside, I might get the opportunity to beat your performance for the Oscar (do you have it on video?).   So - this means schleping every day into the city (OK - it's not that far - but another bridge to cross and we have one car for our family of 6 - husband is disabled, blah, blah, blah (you don't want to hear my country western song of a life).

    I guess if worse come to worse, I'll make a nice excursion into Charleston (it's just another bridge away) - and have lunch with my hubby or something to make it more tolerable.  

    I think maybe I'm enjoying this rant thing!  I'm starting to sound like my 4 teenage kids who have really gotten the rant thing down to a science.

    Irish Mom Deb

    · Share on FacebookShare on Twitter
  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2014

    Your MO sounds admirable.  I think the answer she gave you with respect to how much you might gain by doing chemo is spot on.  At this point, no one knows by what percentage one might benefit from chemo if one is in the dreaded intermediate range.I think your decision and emotional fortitude is commendable.  Even for those of us with low oncotypeDX scores, the treatment plan can never be right or wrong.  Until we pass at hopefully a very old age, no one knows if their treatment plan was "right.". The important thing is that each of us chooses a treatment plan that we can live with, and then live.  And I don't mean live in days, but live life to the fullest and not let the thought of ....have I made the right decision impose on living life.

    I wish you well.

    · Share on FacebookShare on Twitter
  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited July 2014

    Wow, that's the first I've heard that the oncotype is being validated (or perhaps not) next year.  I guess we'll all be waiting with bated breath for that one. 

    Listen, we all have to learn a new breast cancer "language," obtain, it seems, a PhD in treatment, make seemingly bizarre decisions in a ridiculously short time, then learn to deal with multiple new doctors, with new office procedures, and, sometimes, assistants who are useless, or worse.  I don't think any of us function like real humans for months.  We all do what we can, and that's all anyone can expect of us.

    · Share on FacebookShare on Twitter
  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2014

    Brookside..yes!  2015 preliminary results for TailorX.

    · Share on FacebookShare on Twitter

Categories