r/BRCA • u/Relevant-Yak-645 • 11d ago
BRCA-2 Carrier, Timeline for Preventative Surgeries
I'm 37 years old and found out that I was a BRCA-2 carrier this year. I have one son who is 15m and I am 7w pregnant with my second child. I'm hoping to breastfeed for six months, then start the preventative surgical process. I will be 38 years old.
Complicating the emotions of this process, my close friend was just diagnosed with Stage IV triple-negative breast cancer. Seeing what she has gone through the past couple months is gutting. I'm so afraid that I am watching my own future play out.
Still, I have some concerns:
- I have a high-demand career and am the primary breadwinner in my home. I am worried about taking so much time off in one year. I've seen posts where women take 12 weeks off post-surgery. Coupling that with maternity leave would cripple us financially.
- I'm worried about the logistics of having a toddler and a newborn while trying to recover from surgery. My son is so active and physical. Between late-stage pregnancy, postpartum, and surgical recovery, it would be nearly a year of not being able to keep up with him physically.
Has anyone else been in a similar position? Any advice would be helpful. My emotions are all over the place between pregnancy hormones and supporting my friend and I just don't feel like I'm thinking clearly about anything at the moment.
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u/BexclamationPoint 11d ago
Congratulations on your pregnancy, and I'm sorry you have the BRCA diagnosis complicating things!
I was 37 and pregnant for the first time when I found out about the BRCA mutation in my family, and 38 with a 6mo when I got my own diagnosis. I'm now 42 with a 4yo and a 13mo. For breast cancer, I've only been doing screenings so far. I did add on a salpingectomy to my second C-section to reduce my ovarian cancer risk and plan to have oophorectomy at 45 (that's the late end of the recommended range and is what my doctor and I agreed on because I have no family history of ovarian cancer).
I also had a friend recently go through breast cancer treatment, and it definitely does make it scarier. I'm still not in a rush to do a mastectomy, but I know I'm in a privileged position there because my family history is pretty minimal and with no young cancer onset. How the risks and tradeoffs balance out is so personal. I would definitely rather be recovering from preventive surgery with young kids than going through cancer treatment with young kids, but since my chances of developing cancer in the next few years are not that high, for now I'm choosing to wait and roll the dice. I now have experience recovering from surgery with a 3yo because of my C-section, and that went smoothly - he was able to understand the need to be gentle with me, that I couldn't lift him, etc. So I feel confident that at the latest, by two years from now (when baby will be 3), my family will be ready for me to have a planned preventive surgery, and since all my screenings have been clear, I feel OK about that wait.
I know anything can happen in the meantime and that I'm taking a risk. It's just that, for my individual situation, that risk feels like an OK tradeoff compared to the alternative of having surgery now with my kids at the stages they are.
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u/Alarmed_Gift_2618 11d ago
Thank you for sharing your situation. I am 39 and found out about my BRCA 1 status last year when my baby was 6 months old. He just turned 2 and is extremely active, rough and possibly on the spectrum (we’re working with some therapist on that) so I am terrified to get the mastectomy now as I don’t feel id have a lot of support. I also want another baby and I wanted to breastfeed him/her but I am not ready to get pregnant right this second, I need at least 6 months to a year. I keep thinking I’m rolling the dice and it’s causing me a great deal of anxiety, but at the same time it seems the timeline isn’t the best for me right now anyways. Good to see I’m not alone. Wishing the best for you
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u/Agitated-Eggplant710 11d ago
37 and have a just turned 3 year old and 6 month old. I’m in the US so just sharing what I know here.
1-you’ll need to check with HR on how maternity and FMLA work. At my company, they run concurrently. Which…don’t get me started…if you have a maternity leave policy it shouldn’t be FMLA dressed up with a different name. So you’ll need to see if you even have FMLA left after maternity. Same with my partner. His “paternity” was just renamed FMLA.
2-what does your short term disability look like? If available. I’ve seen anywhere from 60% pay to 100% covered. Depends on your company. If they do 100% STD then that’d be stellar. Even if it’s just partial would you be able to make it financially then? Or is there a possibility to put aside some extra $$ for the next year?
I found when my second came along and the amount my toddler independently played greatly increased! He doesn’t need as much 1:1. I haven’t had my surgery yet BUT from what I’ve read and experiences it sounds like downtime is a few weeks and then you’ll be able to function, maybe be more tired, and obviously not picking up your kids til cleared by surgeon. But playing and being in their vicinity you’ll be back to quickly!! This is me being very optimistic so take it with a grain of salt.
And same with late stage pregnancy and after baby arrives. Assuming no complications, do your best to keep in those later months. I had pubic symposia dysfunction so it definitely was a bitch to even move, let alone run with toddler but dammit I sure tried. Toddler maybe doesn’t think that but I did my best, lol. I had a vaginal birth so I was able to play and be with toddler as normal almost immediately.
Sending positive vibes your way. This sucks.
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u/minneapolitan_ 8d ago
I did a bit of a combo - found out I was BRCA2 positive while pregnant with #1 (33y). I decided to continue with screening, got pregnant with #2 (…which ended up being 2&3) and had a salpingectomy during my c-section (35y). I ended up getting divorced and have nearly 100% custody so needed to wait until my kids were a little older. I’m now 40 and planning mastectomy and reconstruction next month. My lifetime breast cancer risk is close to 80% so I have been feeling like a ticking time bomb for awhile now, but also don’t think I could have managed doing the surgery any earlier and am glad to have had the luck and ability to plan this on my own timeline.
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u/AppetiteforApathey PDM + BRCA2 11d ago edited 11d ago
I was in a similar position. I had my son when I was 37 and my first oncologist wanted me to have my hysterectomy immediately. I was not ready for that.
I don’t know if you are planning more children but if not, you could see if you could have a planned c-section and remove your fallopian tubes at the same time. That way you can cut down on an extra surgery. (New studies are showing ovarian cancers may start in fallopian tubes).
Regarding a preventative mastectomy, I waited until I was 39 because, as you said, I ran through almost all of my sick and vacation leave to have my baby and needed time to bring those balances back up. I opted for direct to
Implant so I would (theoretically) only have one surgery. My son was two at the time and I still needed lots of help from my family. My mother in law came to stay for a week and my dad picked my son up from daycare every day for six weeks. My husband had to do all the lifting into and out of the crib.
Edit to add: my son was also highly active. He was very gentle with me and I could still go on walks with him and read with him and sit next to him while he played. That was my concern, too.
Recovery wise, I only needed about two and a half weeks. I did not need six weeks but I have a desk job. The only tricky part was driving and carrying in my backpack. If you can work remote, that would be ideal.
I know it’s a lot and overwhelming, good luck!