Breast Cancer - Prophylactic Mastectomy

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Breast Cancer - Prophylactic Mastectomy

Postby lovemyweenies » Thu Oct 11, 2018 4:19 pm

I'm just curious:

Would you consider a prophylactic mastectomy? If so, would you have reconstruction surgery?

My cousin recently shared that she had a prophylactic double mastectomy earlier this year. I don't know all the details, but my family has a STRONG history of breast cancer and I assume she had genetic testing done for the BRCA1/2 gene to proceed with this course of action. It got me thinking, I could be a carrier of this gene. Would I do this?

I really can't say. I feel like there is way more at play here than a genetic risk, but I can't say I'll ignore it and I certainly wouldn't do anything until I was done having kids and breastfeeding (which if we have another, I'm likely looking at another 5 years). And even if I did have it done, I wouldn't get implants. I'm more opposed to having foreign objects in my body than I am to losing my breasts. I feel like something must be said for 7 years of breastfeeding and pregnancy/breastfeeding-induced annovulation. I know my aunts who have had breast cancer did not breastfeed and don't have kids while my aunts who haven't have had children and breastfed. I'm not sure about my grandmother and I'm not sure about my grandmother on my mother's side. On the other hand, I certainly know that breastfeeding isn't some cure for your risk of breast cancer.

I've been devoting way too much brain power to this topic lately considering I have no plans of possibly discussing it until we're done with kids.

So.... what are your thoughts?
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Re: Breast Cancer - Prophylactic Mastectomy

Postby jennelled » Fri Oct 12, 2018 6:58 am

First, having one of the BRCA mutations isn't just an increased risk - it's basically a guarantee. Any given US woman has a 12.5% lifetime risk of developing breast cancer. Anything over 20% (based on your personal and family history) is considered high risk (I'm at 22%). Anything over 25% is considered super high risk, and I think that's when they start giving you options like mastectomies. BRCA mutations alone give you around an 80% chance of developing breast cancer, regardless of personal factors.

Your personal risk is determined by family history, but also things like how many pregnancies you've had, how long you breasted, etc. There is a ton of money devoted to breast cancer research, and they are pretty good at calculating this risk. Your risk changes with age, as well. While I'm considered high lifetime risk, my risk in the next ten years (because I'm young!) is only slightly higher than anyone else. Also, something like 80-90% of breast cancer patients have ZERO family history. So when family history is there, it definitely ups your chances.

Through a series of referrals, I've landed in the care of a multi-disciplinary cancer team that will follow me annually to minimize my cancer risk (or treat it quickly if found). I'd highly recommend looking into something like that!

To answer your actual question, yes, without a doubt, I would have a prophylactic mastectomy if I were high enough risk (for instance, if I had a BRCA mutation). Even if that meant I would be unable to breastfeed future kids; and I say that as someone who has cherished her nursing relationship with each of her kids - I breastfed Audrey until two, Clara a little past that, and will do the same for Corinne. Me being alive is so much more important to their development and happiness than breastmilk. Would that be a difficult thing to accept? Yeah, for sure.

As far as reconstruction...my gut reaction is that yes, I would. I have reservations about foreign objects in my body (I refused mesh when I had a hernia repair), and I've read several stories lately about bodies rejecting implants. But I think that facing cancer and having my own breasts removed would be incredibly difficult, and I think having reconstruction would help me feel more like me, more whole. I'm not positive I would, but that would probably be my default position.
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Re: Breast Cancer - Prophylactic Mastectomy

Postby LizAnn » Fri Oct 12, 2018 8:38 am

Goodness! I have no idea what I would do in that situation. I think I would have to discuss all of the options with my doctors. I am a researcher by nature, so I think a LOT of time would be spent researching.

My SIL had a double mastectomy last year. She could have just had a lumpectomy, but opted for the double because of her fear of it coming back. She had a flap reconstruction. Basically they do a tummy tuck and use that to form your new boobs! She has had a LOT of complications though, but I think a lot of it had to do with her having such major surgery and then starting chemo shortly thereafter.

I know she had a lot of discussion with various doctors regarding their opinions on the surgery. Many of them recommended the double based on the type of cancer that was found.

Does anyone know if BRCA testing covered by insurance?

My mom and my grandma both died in their 50's, but not from breast cancer. It does make me more concerned with my overall health. I don't want to die prematurely and leave my children motherless because I didn't take a precaution I could have taken to prevent it. So as I think this through, if it were presented as an option and my doctor recommended it, I probably would. I would definitely have reconstruction of some sort though. I know that such a surgery would cause me to have body image issues, and hopefully reconstruction could help a little.
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Re: Breast Cancer - Prophylactic Mastectomy

Postby durbaa » Fri Oct 12, 2018 10:30 am

jennelled wrote: Also, something like 80-90% of breast cancer patients have ZERO family history.


I have never heard this before and it's seriously mind blowing to me. And somewhat terrifying!
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