Anyone BRCA positive?

Hi all. I am BRCA1 positive from BC. Meeting with an oncologist soon to discuss ovaries and tubes removal. Would love to talk with anyone in the same boat. Take care. 

Comments

  • Hello @CanaryBird.  I am BRCA gene mutation positive.  I forgot which 1 or 2. My GP has the documentation. I was 49 when diagnosed so they did a debulking surgery and everything was removed.  Ovaries, fallopian tubes, hysterectomy, cervix but not appendix.  I have had positive results from it and chemo but did have one recurrence so far.  It is common.  I am now being monitored and may take a PARP inhibitor at some point.  You may want to go with the debulking depending on your age.  Preventive in nature.  Good luck with the chat.  
  • CurlyHair said:
    I have had positive results from it and chemo but did have one recurrence so far.  It is common.   
    Hi CurlyHair. Thank you for the response. Do you mean they have found a "hidden" cancer in you after the preventative surgery?
  • Hi @CanaryBird.  Welcome to OVdialogue!   Based on what you have said, I assume that you have not been diagnosed with ovarian cancer.  Is this correct?  It sounds like you have had genetic testing and discovered you are BRCA positive and are now considering risk-reducing preventive surgery by removing your ovaries and fallopian tubes.  If so, are you also considering a double mastectomy?  

    OVdialogue is a new community - only up and running for about 8 weeks and the women in the community have already been diagnosed with the disease.  What kind of feedback/conversation were you hoping to have with other women?  Perhaps I can help in other ways....

    What prompted you to get genetic testing?
  • @CanaryBird Recurrence means ovarian cancer has come back again 
  • Marilyn said:
    Hi @CanaryBird.  Welcome to OVdialogue!   
    Thank you for your comment Marilyn. My genetic testing for BRCA was done because of my 4 young family members were diagnosed with ovarian/breast/uterine and brain cancers. They all passed in their 30s and 40s. I presumably have "endometriosis" diagnosis for about a year. In the light of my BRCA1 status, an exploratory surgery was recommended with likely ovaries/tubes removal. The doctor informed me that there are chances they discover cancer during this surgery, because I am 42 and have symptoms. I was hoping to talk with other members here who are BRCA positive and have had a surgery. I hope this is not a crime. :-) Take care.
  • Canarybird, You should be able to rec a prescription for lynparza being brca +.  I am + but not germline, somatic, but parps may still help in those cases.  Best of luck
  • Courtenay said:
    Canarybird, You should be able to rec a prescription for lynparza being brca +.  I am + but not germline, somatic, but parps may still help in those cases.  Best of luck
    Thank you Courtenay. I thought, Lynparza is recommended for those with an established cancer diagnosis? Also, is it available as a prescription drug in Canada?
  • Hi @CanaryBird

    I am sorry to hear that so many of your family members have passed away at such a young age.  That must be very hard to deal with and now learning that you are BRCA positive and at higher risk yourself. You mention that you are having symptoms and your doctor has indicated that they may find cancer during the surgery.  I am glad to hear that you are meeting with an oncologist to discuss the surgery.  Studies have shown that if ovarian cancer is suspected, that it is important to have a gynecologic oncologist perform any surgery as there are better outcomes.  

    Regarding Lynparza, you are correct  in saying that Lynparza is prescribed for women who have already been diagnosed with ovarian cancer and, in fact, who are dealing with a recurrence.  It is also for a specific type of ovarian cancer that is BRCA positive. So, it is available under these circumstances, however, it is not yet pubically funded.

     I'm not sure what you meant by I hope this isn't a crime?  I do see your smiley face but I hope what I wrote did not make you feel like you didn't belong here!  I was simply trying to say that because OVdialogue is a new community, I didn't think there would be anyone else on the site at this point who has dealt with this same issue - not having a diagnosis of ovarian cancer, being BRCA positive and having to make a decision about preventive surgery.

    I have met women who were BRCA positive who decided to have preventive surgery and were then told that ovarian cancer was found either in the fallopian tubes and/or ovaries. I will see if there is a way that I can connect you with someone who has been through this. 

    When is your appointment with the oncologist?  How are you doing with all this? 

  • Marilyn said:
    Hi @CanaryBird

     I'm not sure what you meant by I hope this isn't a crime?  I do see your smiley face but I hope what I wrote did not make you feel like you didn't belong here!  I was simply trying to say that because OVdialogue is a new community, I didn't think there would be anyone else on the site at this point who has dealt with this same issue - not having a diagnosis of ovarian cancer, being BRCA positive and having to make a decision about preventive surgery.

    I have met women who were BRCA positive who decided to have preventive surgery and were then told that ovarian cancer was found either in the fallopian tubes and/or ovaries. I will see if there is a way that I can connect you with someone who has been through this. 

    When is your appointment with the oncologist?  How are you doing with all this? 

    Hello Marilyn & thank you for your reply. Oh, of course I was sort of kidding, but indeed, I felt myself for a second like I am not in the right place because my cancer is just suspected. But with your kind explanation I am totally comfortable being here. This is in fact, a unique discussion board, and I am not aware of anything similar and Canada-specific. 

    Yes, I would be more than happy to connect with other ladies in the same boat. Looks like there are not so many of us BRCA folks in British Columbia. At least, I have not heard of any kind of meetup or support groups in BC. Thank you for your offer, I appreciate it so much.

    My appointment is in 3 weeks, and I already have been waiting for a month for now. I try to be optimistic and focus on my family & work. Take care & all my best.
  • Hello Canary, a BRCA support group in B.C. is a great idea!  
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