BRCA2 — Decisions, Decisions

‪Getting a positive BRCA2 (mutation in a gene that puts you at a much higher risk for getting cancer) result has changed my life. Between my mom’s current battle with ovarian cancer, and my sister and my positive BRCA results, I can say without exaggeration I think about cancer every single day.

I wonder if deadly cancer cells are quietly destroying my healthy cells. Morbid right? I wish I could make the thoughts go away. I have to remind myself daily – you don’t have cancer, you may never get cancer. But, my mind still wanders to what if?

I’ve seen more doctors in the last two months than I’ve seen in my whole life. All of them recommend getting a bilateral mastectomy and a bilateral salpingo-oophorectomy or BSO (removal of fallopian tubes and ovaries). If you do these things you basically (hopefully?) get yourself out of the high risk category. Seems like a difficult, but obvious decision right?

It’s not, for me anyway.

When I was waiting for my DNA results to come back, I decided if it came back positive, I would aggressively counter it with the preventative surgical options. It’s easy to make that decision when you secretly believe your test will come back negative. But, it didn’t and now I’m not so sure.

I will be getting the BSO surgery because at this time there are no reliable screenings for ovarian cancer and by the time you have any symptoms it’s usually pretty advanced. Maybe because I’m watching my mom battle ovarian cancer this decision was easier. I don’t want to go through what she’s going through.

But, the mastectomy decision is much more difficult. It feels so drastic to me. I’ve seen (and spoken with) so many brave, warrior BRCA women on Instagram who have opted for the full preventative surgeries and I’m awed by their courage and I respect their decision and resolve. But, for me, my mind keeps screaming – I don’t have cancer! Why do I have to do this?

The surgery is not easy, the recovery is long and painful and like any surgery there can be complications afterwards. But, it does lower your risk of getting breast cancer – by a lot. It seems to give most women some peace of mind to move on and live their best life. That’s not a small thing and obviously it appeals to me.

All that being said, I’m leaning towards surveillance screenings twice a year (MRI and mammogram). Many people don’t choose this option because basically you’re just trying to catch the cancer early when it’s easier to treat. But, twice a year you’ll be waiting for results to hear if you have cancer. Can I live that way? Do I want to? I don’t know.

If I get a result back that shows cancer I’d immediately opt for the mastectomy because in my mind the decision would be taken away. But, will I spend every day stressing over cancer? I don’t want to. I want to live a full life and I appreciate my health now more than I ever have before.

I haven’t made a final decision on the mastectomy, but for now I have an MRI scheduled for November and I’ve already had one clear mammogram. I suppose I’ll see how screenings feel mentally and go from there.

So now I’m focusing on the surgery I will be having. I’m waiting for insurance authorization for the consultation and BSO procedure at City of Hope. It’s also an odd feeling to spend so much time in hospitals and centers where people are vigilantly fighting cancer and I walk in healthy with a report showing I’ve got some obscure mutant gene. Their bravery and battle makes my indecision and angst feel so weak and lame. I’m trying to prevent what they’re going through. I should just stop my whining and be thankful science has given us the knowledge and ability to be cancer-free while making preventative choices that could save our lives.

Anyway, I fully realize this isn’t the most fun blog post I’ve ever written, but if one scared and confused person stumbles across it and feels less alone than it’s worth it.

About Jody

Jody is a writer living in Los Angeles. She’s best described as a work in progress - aren’t we all?
This entry was posted in brca, cancer, Health and Wellnes, writing and tagged , , , , , , . Bookmark the permalink.

19 Responses to BRCA2 — Decisions, Decisions

  1. Ed Schilling says:

    My thoughts and prayers are with you. Not being female, i cant pretend to know what you must be going through, but it sounds like you are doing exactly the right thing. Your life comes first. My fingers are crossed for you!

    Like

  2. JOYCE says:

    Jody I know what you are going through. My mother died when she was just 38 yrs. old of breast cancer and the word Cancer has put a fear in me since then, I was only 8 yrs old and that was a long time ago and to this day the fear is there, but it is getting better. Hopefully you will be safe.

    Liked by 1 person

    • Jody says:

      I’m sorry about your mom. You and she were both very young and that’s a tragedy. The C word is scary, but we have to take some of the power away from it by just living our lives and enjoying every moment. Thank you for your kind words. Be well.

      Like

  3. Linnea Paisley says:

    I think every woman must make their decision based on their life, situation & priorities! If you dont have children then that changes things. What does your husband want you to do? What about your religion? In the end its up to you, but your decision will impact the people in your life!!!

    Liked by 1 person

  4. Linnea Paisley says:

    I am a DES Daughter whose identical twin sister was stillborn. I have suffered a lifetime of female problems & surgeries culminating in a hysterectomy at age 39! I will suffer various ailments until i die! Knowing that isnt a blessing or a curse – it just is what it is. In the end, all you can really do is take life one day at a time!!!

    Liked by 1 person

  5. Steven Baird says:

    Jeeze, Jody… Your life does come first, so I truly wish you all the best.

    Liked by 1 person

  6. Susan P Navarro says:

    Hey Jody, you’re fully on top of it, and your research makes all the essays I’ve ever written (with the citations/references/facts) somewhat worthless to any reader. Give yourself that much credit, that you are doing the best, under stressful circumstances, to get all the facts and preventatives to make an informed decision…. in the end, it will be one huge stressor off your shoulders!

    Now for the (for lack of a better term) “vanity” part…. definitely YOU ARE the final decision maker on a mastectomy, so with that said if your husband’s thoughts would tip the scales here, do your best to come to a decision you both can handle… either way, it is your choice which route to go, and you have a right to say, “my life, my body, my decision I will live with, with no regrets.

    Just a link to read, if you want some more info to read about:
    https://www.cancercenter.com/community/newsletter/article/reconstructive-surgery-helps-cancer-patients-reshape-their-self-image/

    Love you, no matter what,
    Soupy

    Like

  7. Renee says:

    I wish I had something profound and life changing to say, but unfortunately I can’t even begin to know what you are going through. So all I can offer is my prayers and good wishes. May God grant you the peace and wisdom to come to a decision that you are content with. And of course lots of Dodger runs along the way 😃

    Liked by 1 person

  8. Dena says:

    I am in exactly same position. BRCA2 previvor chosen oophorectomy in 2015 and breast screenings every 6 months. For right
    Now this works for me but I know that if I have a few scares that require biopsies etc I am likely to go for mastectomy then. I just can’t wrap my head around doing it when I may never get it. My mom has the gene and did not get breast cancer or ovarian. She ended up with Colon cancer !

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    • Jody says:

      Hi Dena, so you’ve been doing breast screenings since 2015? That’s what I’m going to do as well. I plan on getting the oophorectomy this year. My sister has chosen both surgeries. I just feel for me, right now, it’s drastic and like you said a biopsy scare and the decision is made for me. Does this scare you still or are you just dealing with it and going on with your life? Is your mom ok? My mom is getting treatment for ovarian cancer, so far it’s going well. I’m glad you reached out, I haven’t talked to many people who have chosen screenings.

      Like

  9. Bridget says:

    As a #brcasister I know this struggle. The decision is a difficult and deeply personal one based on their life and circumstances. I wish you all the best in your health.

    Liked by 1 person

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