Gene Test and Treatment Options ... I need some advice!

Dawne.Hope
Dawne.Hope Member Posts: 823
edited March 2014 in Breast Cancer #1
I'm confused and I need some advice. I just got off the phone with my onocologist and she told me that mom's gene test was negative. And because hers is negative, mine would be too. I was surprised by that.

Mom was tested because I don't have insurance. My understanding was that if mom was positive, I could have the test for much cheaper. I hadn't even thought that she would be negative. Even if she was negative, I thought that there was a possiblity that I could still be positive for the gene. Both my mom and my grandmother have had breast cancer.

So ... I now have to make a decision much more quickly than I thought I would. Do I do radiation or do I opt for a masectomy? On my biopsy it showed that I had DCIS, and the margins were clear ... so there is technically no reason I HAVE to have a masectomy ... I would just do it for preventative reasons. I thought that I would have several more weeks to make this decision but now here it is before me.

What to do? Radiation? Bi-lateral masect? I know it is a personal decision, but I feel like I have to make this decision much sooner than I thought I would and I'm just not sure.

Any advice you all have would be appreciated. I'm confused and overwhelmed.

Comments

  • pitt
    pitt Member Posts: 387
    #2
    I researched this subject ad
    I researched this subject ad nauseam because, like you, I wanted to make the best informed decision that I could. What I discovered from speaking with oncologists, surgeons, and research is that where the margins are good, there is statistically no difference between doing a mastectomy vs. lumpectomy + radiation.

    The problem is if it comes back = and it can at the same rate for either choice. If you choose lump + radiation and it comes back, then you will need a mastectomy. The radiation can make it more difficult for reconstructive surgery. If you have a mastectomy and it comes back, then it is harder to detect because it often comes back in the scar tissue.

    So here is my advice, choose the option that works best for you. And don't second guess yourself after you make your choice.

    Congratulations on being negative for the gene. That is fantastic news!!! And it gives you a nice option of foregoing any additional surgery, should you chose radiation.

    Pitt
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #3
    I agree with Pitt. I had
    I agree with Pitt. I had the same circumstances and spent days back and forth and back and forth. I drove myself and my family crazy. I finally made the decision and stuck with it. Good luck on making your decision; it really is a personal choice!
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #4
    Decision
    Hi, DH, the negative results for BRCA is truly good news, though I know it means that a decision has to be made. Your oncologist may have an opinion; myself, I'd tend to go with that. Otherwise, you can't do better than the advice Pitt gave you.

    The only thing I can add is to trust yourself, your heart and your mind. You will make the right decision for you.
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #5
    Moopy23 said:

    Decision
    Hi, DH, the negative results for BRCA is truly good news, though I know it means that a decision has to be made. Your oncologist may have an opinion; myself, I'd tend to go with that. Otherwise, you can't do better than the advice Pitt gave you.

    The only thing I can add is to trust yourself, your heart and your mind. You will make the right decision for you.

    Your choice
    You really have to do what is best for YOU!!!!!! What can you live with? What would make you feel better? The stats are the same with both. You can get a recurrence with a mastectomy as well as with a lumpectomy, as they can never remove all of your breast tissue. You have breast tissue clear up to your collarbone. And, the survival rate is the same. Pitt gave great advice. I had a lumpectomy and am very glad that I was able to, followed by rads. But, do what you want, and, only you! Good luck to you!

    Sue :)
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #6
    Ritzy said:

    Your choice
    You really have to do what is best for YOU!!!!!! What can you live with? What would make you feel better? The stats are the same with both. You can get a recurrence with a mastectomy as well as with a lumpectomy, as they can never remove all of your breast tissue. You have breast tissue clear up to your collarbone. And, the survival rate is the same. Pitt gave great advice. I had a lumpectomy and am very glad that I was able to, followed by rads. But, do what you want, and, only you! Good luck to you!

    Sue :)

    Thanks, Ladies!
    Pitt, thank you and I love the Latin! :)

    Thank you all. I wasn't prepared for the 'negative' gene test. I had it in my head that it was going to be positive and it threw me when she said that it was negative. Why can't I just be thankful for some good news? And you all are right, it is good news.

    I didn't know the stats were the same lump. vs mast. Again thank you for your thoughts. I feel a lot better since I've had some time to think through it. I've given myself til Monday to make a final decision.

    Again, thank you for your thoughts! You all are such a blessing!

    Much love,
    dh
  • lynn1950
    lynn1950 Member Posts: 2,570
    #7
    Dawne.Hope said:

    Thanks, Ladies!
    Pitt, thank you and I love the Latin! :)

    Thank you all. I wasn't prepared for the 'negative' gene test. I had it in my head that it was going to be positive and it threw me when she said that it was negative. Why can't I just be thankful for some good news? And you all are right, it is good news.

    I didn't know the stats were the same lump. vs mast. Again thank you for your thoughts. I feel a lot better since I've had some time to think through it. I've given myself til Monday to make a final decision.

    Again, thank you for your thoughts! You all are such a blessing!

    Much love,
    dh

    My mom and younger sister
    My mom and younger sister were diagnosed with BC within the same 12 month period as my diagnosis. All three of us are BRCA negative! I chose a bilateral mastectomy, because I am a wimp. I don't think there is one right decision. Just do what feels right to you. xoxoxoxo Lynn
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #8
    lynn1950 said:

    My mom and younger sister
    My mom and younger sister were diagnosed with BC within the same 12 month period as my diagnosis. All three of us are BRCA negative! I chose a bilateral mastectomy, because I am a wimp. I don't think there is one right decision. Just do what feels right to you. xoxoxoxo Lynn

    Congrats on being negative
    Congrats on being negative for the gene. That is good news!

    As far as your choice, you do what is right for you. The stats are the same with either a lumpectomy or a mastectomy. I felt lucky that I could have a lumpectomy, followed by rads. I am not sure I could have gone thru a mastectomy.

    Just don't second guess yourself. And, don't let someone else sway your decision, not anyone. Make the choice that you want.

    Debby

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