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  • prncsviolet
    prncsviolet Member Posts: 48
    edited November 2011

    Well my fate has been sealed now. The BRCA test was taken this past Friday and the MRI was yesterday. Now just waiting on the results to decide my fate. Problem is god willing they both come back negative I still don't know how to decide what to do. My gut tells me to have the double BMX to lesson my chances and because I don't want to live every day wondering if tomorrow will be the day. Yet my head (and quite a few people) tell me why do such a major operation and life changing thing when I can get away with a lumpectomy and radiation. I don't know what can even help me in making my decision. There are so many wonderful people on here with different opinions and actions and I know ultimately no one can tell me what to do to make my decision except me. I just don't know what is going to help me decide!!! I hate this feeling of no control!! I hate having to keep smiling for my children's sake!! I hate not knowing what the right thing is!!! I hate knowing once I make a decision it could be the wrong one!!! I hate hate hate hate breast cancer... Ahhhhhhhhhhhhhhhhhhhhhhh!!!

  • eileenr56
    eileenr56 Member Posts: 135
    edited November 2011

    HI,

    Personally, I think you should talk to your doctor and your family.  You're doctor is better prepared to give you advice than anyone here.  We all have our experiences that we can present, but we aren't doctors.

    I've said this many times on the boards.  At the end of the day, you have to wake up and believe that you did what was best for you.  For me, I just had a lumpectomy and radiation.  It was the best decision for me.  Actually, I wouldn't have even thought of MX.  The doctor didn't even present that as an option. 

    So,  follow your heart and your doctor's advice.

  • beacon800
    beacon800 Member Posts: 922
    edited November 2011

    Well, now you're in the "wait" part of the "test/wait" cycle.  This thing can go on for a bit, so try and stay calm as possible.

    What I did to help myself was create a decision matrix, along the lines of, "if this......then that".  Example:  "if my BRCA test is positive then I will do BMX".  I did this for a variety of things including the analysis of whether to do sentinel node biopsies.  (I ended up not doing them.)  I shared these decisions trees with my doctors and got their feedback.

    You can ask your doctors and you can get all kinds of opinions.  I have access to many brilliant medical minds and believe me, I used them all.  I got opinions ALL across the board.  Doctors have a lot of differing views.  There are just about no clear answers when it comes to cancer.  There are medico-legal matters they consider that you will not be aware of.  (like the fact that bmx is not standard of care for DCIS and if they recommend this often enuf they will lose their medical license and may be exposed to litigation.) 

    My surgeon posed an interesting question to me: "if we do the BMX and I come back and tell you all we found is normal breast tissue, how will you feel?  Will you be horrified that you took off your breasts without finding any cancer or will you be happy?"  My immediate gut reaction: " I will pop champagne and thank the Lord that we got ahead of this thing."  That was my straight gut feeling and that's how it came out and that's what I did (and frankly still do - I consider myself the luckiest girl.)

    You might also review how you feel about taking tamoxifen and if you have any medical issues that preclude it. 

    I think I said it before, but you also need to review your path report with great care.  A grade 1 dcis in a small size is far different than a grade 3 with comedonecrosis in a large area.  These are totally different IMO and you should know what you have so you can make a good choice.

  • prncsviolet
    prncsviolet Member Posts: 48
    edited November 2011

    Well I'm still waiting on my phone calls obviously but I think I have finally come to terms with taking my chances if everything comes back with what i've already been told. If the MRI doesn't show anything further and the BRCA test is negative I have decided to go the lumpectomy/radiation route. Which leads me to believe with the way my luck has been going that since I've come to this decision they are sure to find something else.....Sorry I know I'm supposed to be thinking positive but it's just getting hard!!! I'm just so tired....so so tired....and I know my diagnosis as of now is so much better than so many people and I have no right to feel this way but I just can't help it right now. 

  • cycle-path
    cycle-path Member Posts: 1,502
    edited November 2011

    I think relatively few people "feel sick" with cancer of any type until it's gone pretty far. There are always exceptions, of course, but I think the majority of people feel nothing for a long while. The cancer is discovered either with a regular diagnostic test or by happenstance. Once one feels sick, one is generally (not always) in a very late stage, and possibly won't be successfully treated. Here on BCO we occasionally hear from a woman who's diagnosed with Stage IV cancer who previously had no idea there was anything wrong!

    So if you don't feel sick -- that's a very good thing!  

  • Iz_and_Lys_Mum
    Iz_and_Lys_Mum Member Posts: 126
    edited November 2011

    Hey violet



    Just wondering how you are getting on and if you have any more info yet?



    Love and hugs



    Caroline xxx

  • prncsviolet
    prncsviolet Member Posts: 48
    edited November 2011

    Thanks for asking Caroline... Im hanging in there but still waiting on the results of my BRCA test. I should've had them by now but there was a screw up with one of the two identifiers. So they had to send the test back. I think I should know something this week. I'm going to actually call tomorrow to the doctor's office just to ask if they've heard anything. The waiting is just driving me crazy!!!!! Once I have that info then I can start making my decisions.......

    Violet

  • eulabt
    eulabt Member Posts: 194
    edited November 2011

    I was in your exact shoes last year in12/10. I have a family history as well, so it was a no brainer for me. I had the BMX with reconstruction and am so happy with my choice. I told my surgeon what I was doing even before he gave me his recommendation. I know too many people who have ended up regretting their choice and go back for the BMX later. Good luck!

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