thought I was set, but now what??

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tweekerbeeker
tweekerbeeker Member Posts: 93
thought I was set, but now what??

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  • tweekerbeeker
    tweekerbeeker Member Posts: 93
    edited June 2008

    BRCA2+, planned oomp 7/1, hoped for pbm in  mid-july or August. Now I read that for brca2, cancerous lesions may show up as benign appearing. My mammo  records a benign appearing cyst, with some low  echogenecity. It is a good size. On mri they say it shows no suspicious enhancement, but that was b4 they knew my brca status. Should  I call off the oomp  and get a  biopsy instead, or go right to the pbm and see what they find?  I am so stressed!!! I had told my kids after the last biopsy that I was at high risk but no cancer. Now I am quite alarmed. ?Cannot focus on anything, high anxiety and anxiety med seems to do nothing. My mom was not diagnosed til stage3 or , died 2 years later. Can't stand the thought- I have to know NOW what it is. Don't want to wait til pbm results to find out it is cancer!!

    But another biopsy will be so expensive, and don't know how i can deal with the result as I was so relieved to be able to PREVENT this . This can't be happening!! 

  • wallycat
    wallycat Member Posts: 3,227
    edited June 2008

    I am so sorry you are going through this.   Cancer is out of our control.

    I would urge you to speak to a genetic counselor and maybe a support group.

    Genetic testing is risky because though carrying a certain gene may predispose you (put you at higher risk) of a disease, it doesn't mean you will get it.  Still, BRCA plus your mother's history certainly puts you at that nasty "higher risk" status.

    Has your doctor talked about Oopherectomy? or did you decide you wanted this on your own? 

    No one can make decisions about surgeries but you.

    We can suggest what "we" (individually) would do in a similar situation but that doesn't mean it would be right for you.

    If you were prepared to go ahead with the surgeries, can you reschedule to move things up? 

    I ended up testing negative for the BRCA1/2 but was prepared to have ovaries and breasts removed.  I ended up just having bilateral mastectomy because of ILC in right breast.

    It was 1 year on Friday and I have not regretted my decision.

    I'm a worrier and for me, the peace of mind in risk reduction (though not nil, much less risk) was worth it.  Not everyone is a worrier and not everyone opts for this route.

    Best to you on this icky journey we women deal with.

    I will add that I ended up having to wait nearly 2 months to get my MRI and then go back for a second MRI for the biopsy....It is June and if your surgeries are July/August, I would think you could wait.  My only concern is about a second surgery to do SNB because they don't know if it is cancer or not.  Maybe they can do a preliminary rush of the mass and then do the PBM, and then decide on the nodes.

    Again, best to you! 

  • veggievet
    veggievet Member Posts: 72
    edited June 2008

    Dear Tweeker,

    Deep breaths my dear!  I'm so sorry that you are dealing with this.  This still can be benign but I'm glad that you are being proactive about it.  I second the recommendation of speaking with a genetic counselor.  Do you have one? Has your health care team done an MRI?  MRI is a bit more sensitive in distinguishing cancer from benign lesions.  MRI is also considered standard-of-care for BRCA carriers.  I also have a BRCA 2 mutation by the way.  Please feel free to e-mail me at: suefriedman@facingourrisk.org if you'd like to chat.

    Also you might want to check out the website for FORCE: Facing Our Risk of Cancer Empowered at: http://www.facingourrisk.org which is a website devoted to hereditary breast and ovarian cancer, and women with BRCA mutations.

    Hope this is helpful.

    Hugs and love,

    Sue

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