Research Rrrrrrrr : (

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KeepingFaith69
KeepingFaith69 Member Posts: 508
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I have been trawling the Internet, trying to learn about recurrence, treatment options, prognosis etc.. in the hope that I would have hope.

And everytime I look, I get this sinking feeling in my gut.  The news is not at all good.  Sometimes I wish that i could be an 'ignorance is bliss' type of person.  But I am not.  I am an analyst, and statistics type of person.  It's my speciality.  But it's not helping me any, when trying to gather information related to my current situation.

Any suggestions / ideas would be gladly appreciated.

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  • VJSL8
    VJSL8 Member Posts: 652
    edited November 2011

    I've had BC twice and I'm just like you. The first time it was a fast and steep learning curve but I really believe that in the long run, you will be better off--knowledge is power. But take it as you can handle it, don't push it. Sometimes I was in complete overwhelm.

     When I had the recurrence (after 23 years), I didn't go into the same panic mode as the first time because I had a solid foundation of knowledge that led me to the best treatment possible. And isn't that what you really want--the best possible treatment for your type of BC? As an analyst and statistics type person, you also know that statistics don't apply on an individual basis. So you probably really don't want someone else making those decisions but find a doctor that you can partner with--I love my oncologist--same guy both times. I really feel like we have a partnership, where he really listens to what I think. Good luck!

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  • beau
    beau Member Posts: 374
    edited December 2011

    Hi KeepinFaith,

     I can really relate to what you are saying about being a stats person. I love numbers/statistics,etc and have a career which uses finance/numbers as a big part of my job. So, this is both a curse and a blessing when it come to BC and Dr. Google. 

    I spent the first few months after my diagnosis, surfing the web and saving all info in different word documents that I thought were relevant. I was scheduled for TC X 4 chemo so I actually read all 250 pages (and took notes) on the "only cytoxin and taxotere" thread" thread here on this site (apologize about title and spelling of thread as it is not quite correct. I "interviewed" 3 oncologists (that is not how they viewed it), but the one that I adored is the one who not only does email but engaged me ( humored me) in an intellectual back and forth about various chemo protocols/survival rates, etc.

    I am now 18 months out from my original diagnosis. I think a lot of the energy I spent on Dr Google was mixed. It did make me feel more in control so that is a good thing. It did make me more scared about the future so that is a bad thing. In the end, there is a balance between being informed so that you can advocate and being obsessive to the point that you cannot enjoy whatever time you have left. (we can all get hit by the proverbial bus tomorrow; the difference is that we have no knowledge about the bus!).

    Don't think for a moment that I don't understand where you are at! I am just saying that give yourself time - don't judge yourself or jump to the worst case scenario. When I went through chemo, my insurance covered "psychological counseling" so I took some sessions on " positive cognitive therapy". Basically, I had to keep an account of my feelings, my judgements, and then re- assess the possibility that my judgements were correct. The most wonderful thing about the therapist was that he said: "people with cancer have reason to be fearful about their future so they are different from the average patient." Yeah! validation for my terror. That said, I did see a pattern emerge: I tended to focus on the worst case scenario. You may not be that way, but you it is not unreasonable for you to be scared and down.

    At the end of the day, just give yourself time to wrap your mind around what has happened to you. Try to enjoy your time despite what feels like a sword over your head. I hope that you can find joy and peace in the months ahead.  

    Best, Beau 

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  • Gitane
    Gitane Member Posts: 1,885
    edited December 2011

    I have been practicing approaching the information and subsequent feelings when I'm stronger and letting it go when I'm not.  It's a lifelong balancing act, I think.  I'm like you, needing to know, but I have had to force myself to learn the letting go, soothing myself part of it.  Then there is the fact that Beau pointed out, we may not know as much as we think we do.  I tend to scare myself a lot.  Our personal future is still a mystery.  Hugs,  G. 

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited December 2011

    Thank you all, I really appreciate your advice.  I am a worst case scenario person and it's not helping me at the moment.  Time to breath, appreciate today (with my darlings) and expect the best xox

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