What to think???

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KatMJ
KatMJ Member Posts: 75
edited June 2014 in High Risk for Breast Cancer

I'm considered 20% risk (not via Gail Model..they used a different one at the breast center I go to). I'm 47 and have dense breast (? percentage but it's in the high range) + very cystic on one side in particular.

BC in both aunts on each side (one aunt had two primaries with one being an early onset).  No bc for a first degree relative (I have no sisters or children).  Had BRCA testing (doctor wanted it done) and waiting for result.  Suspect it will be negative.

Met with surgical oncologist (since I had my second ever MRI - had one last year and now this year).  He said the good news is no bc (which I knew).  But the bad news was they are having trouble reading me and sending me for an MRI every year is much.  Currently that is what I am scheduled for - MRI + mammo every year at one time not every 6 months.  He said his bc patients don't get MRI's that much.  I really didn't want to be on the MRI ride so to speak but here I am scheduled for them every year due to my risk factor.  I said if it's just a matter of paying my deductible then I have no stress of doing it each year. 

He told me we have the best of the best around here and still they are having trouble with me.  He suggested nipple-sparing mastectomy but said I needed to make the first move on that (guess since I really don't qualify with insurance based upon the situation)  He said in all his years of practice he has only said this once before (meaning someone who is in my situation - very dense + multiple cysts). Said mammo's are worthless to me.  He also said getting implants wasn't risk free either.  I commented so you are telling me 'I'm dXmned if I do and dXmned if I don't." 

Waiting on BRCA result (if it was done - my insurance might have denied it - I was on the edge of their approval due to family history)

Any suggestions?   Personal experiences that could help me?  I am totally clueless.  I know me...if BRCA neg.  I will do nothing for a year and then when testing time comes up again I will think about it.  I LOVE to avoid...but is avoiding the best option.  Where is that crystal ball !!

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  • LISAMG
    LISAMG Member Posts: 639
    edited September 2011

    Hi Kat, I am un-informative BRCA negative with multipe bc/ovca cases on both sides of my family. No [2] affected family members have the BRCA gene either. If your test comes back negative, u would then be considered BRCA un-informative negative as well, providing no affected family members have tested to identify a possible mutation. My suggestion to you would be to alternate your mammo with a sono together and the MRI 6 months later.  As a result, u will have a better chance for early detection with every 6 month screenings vs. annual screenings. My genetic testing and risk reducing NSM was approved based on family history alone, using evidenced based criteria by the insur. co. with no problems. It took me 4.5 years to make a decision after seemingly endless agonizing torture, but surgery is not for everyone. I could no longer endure the grueling surveillance with a history of multiple surgical biopsies and dense breast tissue. You are doing all you can at this point. Gather all the facts, take your time and talk to others. Is it possible for any of your aunts to have genetic testing? Did u meet with a genetic counselor or did u have your BRCA testing thru a physician?

     Keep us posted. Sending u lots of BRCA negative wishes  :))

     Best, Lisa Innocent

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  • KatMJ
    KatMJ Member Posts: 75
    edited September 2011

    Thanks for the reply!!

    The MRI doctor said in my case once a year would be best so they can review the mammo and MRI at the same time - he didn't feel my risk was so great that I needed every 6 months and we would review this in the years to come.  In his opinion it makes the mammo more worthwhile to do them both at the same time. Guess his way of saying the same as the other doctor that a mammo isn't working for me.  I read up about the doctor and he's like a who's who in the breast mri world.  Hoping he is correct.

    My one aunt died this year and she did not have BRCA testing.  She has 3 daughters (all over 50) and none of them have bc or testing for BRCA.  I talked to one and she told me she never got a call back - I have only had one screening mammo that did not get a call back. Other aunt on the other side of the family probably will not get tested.

    I've only had one biospy - knew what it was and I was correct (a fibroabnoma).

    I'm just at a loss...I read here about people more like you where you have a greater family history and more biospies.  I know I'm hard to read...but is it this hard and my chances of getting bc so great that I need to consider removal?

    Question - hard to figure out how to ask this...are you happy with your choice?  Seems like it was the only choice for you...

    Thanks!

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  • LISAMG
    LISAMG Member Posts: 639
    edited September 2011

    My happiness & relief are simply beyond immeasureable with far better looking breasts now than before my surgery. Undoubtedly i owe thanks to my amazing surgeons for providing me with "cutting edge reconstruction". Feeling a huge sense of normalcy and reducing my risks are both priceless. Only wished i hadn't waited so long, but the lengthy "homework" process & research was self gratifying. As a result, i made a wise and fully informed personal decision, i feel. Your assumptions are correct in that i had little or no choice...my quality of life was very poor.

     Stay vigilant, remain proactive with your breasts and be your own advocate....are my best recommendations. When/if the time is ever right, u will know.

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  • KatMJ
    KatMJ Member Posts: 75
    edited September 2011

    I am so happy for you!  I had a small taste of what a hard decision it is.  I think you were very wise to educate yourself and take the time. And to get a fantastic result!! 

    I got a call today - my insurance did cover the BRCA testing and it was negative Laughing  She told me something different than what she said in our meeting.  In the meeting she said my risk before testing was 19.87 and if negative it would be 19.6.  But on the phone she said my new risk is 15.5  I'm very pleased it went down.  Even before that conversation I decided to call to have next year's MRI cancelled.  Now I don't qualify for it unless the dr orders it special.  Still puts me in a unique position of them having trouble reading my mammo.  I guess I have to put it in someone elses hands.  I'm diabetic (have great kidney function now) but with the new results that puts the MRI also into the catagory of unnecessary risk with the diabetes. No easy solution for screening but odds are in my favor it's just a matter of screening....I HOPE!!!!!!!!!!!!!

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  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited September 2011

    Stay vigilant no matter what statistics say (just to reiterate what LisaMG said)!

    M

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  • KatMJ
    KatMJ Member Posts: 75
    edited September 2011

    Thanks.  I called today and cancelled next year's MRI.  However, I will have the surgical oncologist review my mammo next year.  He decided to take on reviewing me last year and I feel that is to my benefit - having two doctors looking at things.  Then if an MRI is needed we will do that again...maybe - I suspect I will be put in the same position as this year where the breast center wants it done but the doctor who is reviewing me would prefer I don't do yearly MRI's.  I don't like being put between them.  Not a perfect solution.  Just hope bc passes me by.

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