You ladies amaze me!

AzKim
AzKim Member Posts: 124
You ladies amaze me!

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  • AzKim
    AzKim Member Posts: 124
    edited October 2009

    I am very impressed at how much information you ladies have about your type of cancer and the chemo treatments you've had or are having. I have/had ILC as well and geez,.I can't remember what I had for dinner last night,.let alone the details of my treatment. Kudos ladies! I'm half tempted to ask a bunch of questions on my next check-up but,.I'm too scared to. Bless each and every one us,..this so sucks.

  • hlya
    hlya Member Posts: 484
    edited October 2009

    Hi, Kim,

    My friend knew nothing about BC at dx and she was very scared at the beginning,  as she got lymph node involved.  When she heard some recurrence/mets cases she couldn't go to sleep, thought straight and even had no appetite.

    Now after getting lots of info. from her friends she calms down a lot now and understand different person has different situation.  Knowlege makes her feel much better, cause she no longer lives in darkness.

    Good luck at your next check-up and hope you get all what you need to know.

  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2009

    AzKim ~  I'm not sure I understand what you mean by scared.  Are you scared to ask because your doctors are condescending, or you think your questions are silly -- or scared because you don't want to know something like your chances of a recurrence?   One thing you need to keep in mind is that treatment, especially chemo, has changed a lot in recent years, and the statistics don't yet reflect those improvements.  Hopefully, we are all on the cutting edge of a group of women getting more targeted, aggressive tx, so will have better stats than previous studies.   

    I agree with hlya -- knowledge is power, and there's no such thing as a dumb question.  Have you been asking for copies of your pathologies for each test or surgery, etc.?  Most of us remember very little of what we're told, but a lot of us keep a file of all those reports, so that we can go back to them and figure out how things relate to our situation when we hear something new. 

    Feel free to PM me if I can help you with questions you may be afraid to ask ~   Deanna

  • AzKim
    AzKim Member Posts: 124
    edited October 2009

    Thanks for the replies. Yes,.I do have all my paper work and I've read it a thousand times it seems,..I  just don't know the details like most of you. For instance,..stats,.recurrence rates,.BRACA,.etc. I wasn't tested for that as far as I know. I'm afraid to ask questions because I'm not sure I WANT to know. Once I hear something,.I run to the web and read,.read,.read and pffft,.we all know that just makes things worse,....least for me. Was all this information you ladies share, on your reports or did you drill your oncs for answers? I'm not sure why I'm even asking,...must be one of THOSE days for me. Thanks again. :)

  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2009

    (((Kim)))  Sorry you're having a rough day.  And, yes, reading and researching can absolutely make it worse!

    Stats and recurrence rates are things my docs probably gave me a general idea about when they told me why I needed chemo and rads -- that they would bring down my chances of reoccurence by so many percentage points.  There's also a website called Adjuvant Online, where your doctor (or you, if you sign on as a medical professional) can put in your stats and come up with recurrence rates.  However, as I said above, I think a lot of that is based on old science because a woman with your stats 10 or even 5 years ago probably would not have had the same aggressive tx you probably got in 2008.  

    BRCA is a gene mutation.  Normally, and especially if there is anyone else in your family who has had bc, a counselor who specializes in that will look at your case and decide if you need to be tested for a gene mutation.  If no one ever mentioned it to you, it's perfectly okay to ask if it's something that was or should be considered about your bc.      Deanna

  • AzKim
    AzKim Member Posts: 124
    edited October 2009

    Thank you Deanna for the info. I think I'll steer clear of punching in my stats. I was just curious how you ladies get all your information. BC doesn't run in my family so maybe that's why I wasn't tested for the gene mutation? My onc never said anything about stats,..only that I had extensive nodal involvement,..I'm guessing as soon as I heard that,..I tuned everything else out. Thanks again everyone.

    Kim~

  • nash
    nash Member Posts: 2,600
    edited October 2009

    Kim, I learned everything I know about bc through a combination of reading the discussion boards at sites like this one, and then googling terms I got from either my path report or my doctors.

    My late Stage IV mom was diagnosed in 2002, so I was well read on her type of bc (IDC HER2+) before my diagnosis. When I was diagnosed with ILC in 2007, I knew nothing about it, so started googling like crazy. I like to be well informed about what's going on b/c I feel that it makes it easier for me to ask productive questions at dr appointments. I've also learned over the years that the docs only tell you a fraction of what you need to know, and sometimes they even tell you things that are flat out wrong. 

    I love to research in general, and I'm an info junkie about everything in my life, so that's just how I handle my disease. That approach may not work for everyone--you have to proceed in a manner that's comfortable for you.

  • spar2
    spar2 Member Posts: 6,827
    edited October 2009

    Kim, yes it does, but we are tough women around here and always here for each other.  If one of us can't answer your question I bet someone will ask their dr. or google it.  You do need to keep all your information together because if something happens and you have to change dr.s you need it all at your fingertips.  I always ask for copies of my lab and test and keep a file.  Bless you and sending you hugs.  sherry

  • AzKim
    AzKim Member Posts: 124
    edited October 2009

    Thanks Sherry for your reply. :) I do have all my paper work together,.that's the one thing I have organized.

    Hugs ladies.

    Kim

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