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BRCA1positive
BRCA1positive Member Posts: 22
edited December 2015 in High Risk for Breast Cancer

Hello all. I am a 33 year old with the BRCA 1 gene mutation. I have been having ultrasounds, mammograms, and MRIs since I was 24. My mother has survived breast cancer 3 times (once after a double mastectomy), my aunt had it twice, and my grandmother died of it. 2 years ago I had my first biopsy and it was thankfully negative. This year my MRI showed a 7x5x5 mm mass BI-RADS 4. This is the first "mass" I've had. I went for my ultrasound and they found a second mass. The second mass was perfectly rounded, therefore I am not too concerned about it. I am scheduled to have a biopsy for the first mass next week (first available appointment). The mass appeared rounded on the MRI but on the ultrasound it is not, it has a very irregular shape. I am terrified of this journey and I don't want to worry the people around me. My mother is already freaking out about my results and I don't want to worry her further. My sister is not supportive in any instance. My boyfriend is trying to be supportive, but is not the greatest talker and says that it is out of his control and we just have to wait. I desperately want marriage and kids, I'm 33 and not quite out of time. I'm scared of not having kids, I'm scared of losing my breasts, I'm scared of being left alone. I find myself crying in the dark with my anxiety levels high. I'm supposed to return to work on Monday, but I just want to stay in bed and sleep until next Friday's biopsy. Any words of wisdom would be welcomed. I want to be able to breathe again.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2015

    BRCA-

    We want to welcome you to our community here at BCO. We're sorry for the worry that brings you here, but we're glad you've joined us. You've come to the right place for support and encouragement. Everyone here knows what you're going through, you are not alone! It's a lot to process, we know. But just take it a day at a time, and do what is best for you. It's completely normal to be scared! We hope the next week flies by, and that your biopsy goes well. Please let us know the results, we'll be thinking of you!

    The Mods

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  • MCatSoul
    MCatSoul Member Posts: 1
    edited October 2015

    Oh honey...First, try to relax. I know easier said than done!!! Have you had anymore testing done since you posted?!!! I had my double mastectomy and oopherectomy on 9/30 of 2015. It has been a hard month but I do not regret it one bit. Remember that you can have kids with no breasts!!!! And implants can look absolutely stunning. Let me know what has happened since your post and I can offer what I can in way of advice!!! ❤️❤️❤️

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2015

    MCatSoul, what a nice post! Thanks for chiming in :)

    BRCA, how are you doing??

    --Your Mods

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  • BRCA1positive
    BRCA1positive Member Posts: 22
    edited November 2015

    Well, it's been a hell of a month! The first biopsy showed invasive triple negative carcinoma grade 3. The second biopsy was benign. Now I'm scheduled for a lumpectomy on November 5th, then fertility meds and egg harvesting/freezing, then chemo and radiation, followed by a double mastectomy with reconstruction. It's been hard to stay patient. Disability is giving me problems, I have no idea where the money is going to come from to pay bills. My sister started a giveforward page for me to help raise funds. Do you know if it's ok to post the link on this community?

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  • Fredericy
    Fredericy Member Posts: 1
    edited December 2015

    my breast often feel hurt... I think I should take a test

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  • Marg64
    Marg64 Member Posts: 64
    edited December 2015

    Dear BRCA,

    I so sympathize with your situation: Surgical removal of a substantial risk vs. fulfilling a very real yearning for marriage and children.

    The two--marriage and children--are not mutually exclusive. Most people want both, I'd encourage you to think about which one you desire more. If that desire is for kids, you're young enough to conceive naturally or via donor insemination without artificially stimulating egg production. You and the donor could talk to a lawyer about waiving his future obligations.

    If your desire is primarily marriage, choose someone who is already financially independent (not living with parents, working with good insurance) who wants kids but can live without them.

    Going the IVF/multiple fertility route is very arduous, especially after 35. Someone dear to me did that. She had her baby at 41. She got IDC at 41. Her marriage is dead.

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