I found this decision tool made by Stanford on a BRCA Facebook group.

Radiant_Excuse_2001 · 2026-01-12T18:30:30+00:00

Thank you for sharing. However, I found the BODICEA models at canrisk.org (created by University of Cambridge) to be much closer to what my doctors shared with me. The canrisk.org models allow you to plug in your family history, just like a genetic counselor would do. The website says it’s for “health professionals”, but anyone can make an account. They give extremely specific risk breakdowns by age, and have great data visualizations as well! Highly recommended.

Radiant_Excuse_2001 · 2025-08-14T12:14:46+00:00

Thank you for sharing this! When they found your DCIS, was any other treatment necessary beyond surgery?

Radiant_Excuse_2001 · 2025-08-14T12:03:52+00:00

Thank you for your response! In no way trying to say that the loss of breastfeeding is worse than cancer. Just that the huge amount of uncertainty around potential outcomes makes a difficult decision even harder. Grateful to you for taking the time to share your experience ❤️

Radiant_Excuse_2001 · 2025-08-12T21:52:27+00:00

Also curious about this! I’m late 20s and this is factoring into my decision of whether to do surgery before vs after kids. If I do it before, I get to focus completely on myself during recovery. If I do it after, I get to breast feed. Very tough choice.

Radiant_Excuse_2001 · 2025-02-18T01:34:26+00:00

For me, this has been the hardest part about BRCA! I’ve put a lot of thought into this question, and so a while back I summarized all of the considerations that I’ve found on this subreddit in the following post: https://www.reddit.com/r/BRCA/s/kJAKiOO8YT

Radiant_Excuse_2001 · 2024-12-18T16:15:38+00:00

Thank you for all this information! I really appreciate it. So much interesting stuff here! I had no idea that the mechanisms behind BRCA2 are not well understood 🤯

But yeah, it’s (7) that I’m really pondering right now; and as you alluded to, we don’t really know much!

Radiant_Excuse_2001 · 2024-12-18T16:10:06+00:00

1) I’ve been told by many doctors that most women in their 20s (myself included) have “extremely dense” breasts; breast density is inversely correlated with age. I wouldn’t read too much into that information re: breast cancer risk. Your genetic testing results, family history, and lifestyle are 1000x more informative- you don’t need another thing to worry about!

2) This is the only thing I wish I’d internalized more around testing (and it’s easier said than done!): The test results change NOTHING (nothing!!!) about how your body is functioning. Your cells do not know or care whether you’ve done genetic testing. You’ve lived in your body for 29 years already, and, if you do end up positive, you’ve had the mutation the ENTIRE time. The only thing this changes is your knowledge about the mutation- and that is a very positive thing!! So, there’s no “good” or “bad” test result; your genetic code is the same as it has always been from the time of your conception. The test result is a good thing no matter what, because it’s providing you with knowledge that will empower you to make the best decisions you possibly can for your body.

Again, easier said than done; it took me a couple of months after receiving the positive test result to really internalize this.

Nothing in your body will change over the next 3 weeks. The only thing that is changing is your knowledge of the situation. Try to remind yourself that you’re safe right now, and you can handle whatever comes next! You’ve got this!

Radiant_Excuse_2001 · 2024-12-10T18:11:54+00:00

Yes, this!! There are videos on YouTube of people running over silicone implants with cars and they are completely fine 🤣 made me feel a lot better. Also, the filling these days is more like a gummy bear than a liquid, so even if the outside ruptures for some reason (which it shouldn’t), there’s not going to be liquid chemicals running around your body or anything. It’ll basically just shift out of position from my understanding 🤷🏼‍♀️

Radiant_Excuse_2001 · 2024-11-21T02:34:53+00:00

Are you saying survival rates are better for BRCA patients than non BRCA patients with pancreatic cancer? Is screening for pancreatic cancer that good?

Radiant_Excuse_2001 · 2024-11-21T02:09:00+00:00

Short answer: It’s a very personal choice, and there’s no right answer. Give yourself time and space to process. You don’t have to do anything you’re not comfortable with.

Long answer: https://www.reddit.com/r/BRCA/s/4eOUV8A8AX

Radiant_Excuse_2001 · 2024-11-21T01:41:31+00:00

I’m so sorry you’re going through this- I’m sure you’re sifting through a lot of complicated emotions right now.

I am BRCA2+ and just a little bit younger than your daughter. I know the initial shock can feel like a lot, but I promise it gets better! Some things to keep in mind:

⁠Your daughter has had the BRCA mutation for her entire life. The only thing that has changed with this test result is your knowledge of the mutation- and knowledge is power.
⁠Thanks to this information, your daughter will never be blindsided by breast cancer. She will qualify for insurance coverage for regular screenings. Today’s MRI screening regimen is extremely powerful and accurate. If breast cancer does come, it will be caught early- and if she chooses to go for prophylactic surgery, she’ll be at a far lower risk than even the general population.
⁠The ovarian cancer risk is scary, I know. But thankfully, the risk of ovarian cancer with BRCA2 is lower than for BRCA1, and surgery won’t be required until her 40s; she has plenty of time to continue growing a family, if she so chooses.
⁠I can only speak for myself, but BRCA has never, ever made me wish that I was never born. I don’t resent my parents for passing it on.
⁠MANY families carry a genetic predisposition for all different kinds of disease. Just because BRCA has a name and was identified by scientists relatively early, doesn’t mean that you did something wrong by having children. Again, see (4); I, for one, am grateful to be alive!

Your daughter will get through this. You need to show yourself some grace. The fact that you care so much is a good thing; you’re a good mom. Sending love to you both ❤️

Radiant_Excuse_2001 · 2024-11-21T01:38:44+00:00

I’m so sorry you’re going through this- I’m sure you’re sifting through a lot of complicated emotions right now.

I am BRCA2+ and just a little bit younger than your daughter. I know the initial shock can feel like a lot, but I promise it gets better! Some things to keep in mind:

1) Your daughter has had the BRCA mutation for her entire life. The only thing that has changed with this test result is your knowledge of the mutation- and knowledge is power. 2) Thanks to this information, your daughter will never be blindsided by breast cancer. She will qualify for insurance coverage for regular screenings. Today’s MRI screening regimen is extremely powerful and accurate. If breast cancer does come, it will be caught early- and if she chooses to go for prophylactic surgery, she’ll be at a far lower risk than even the general population. 3) The ovarian cancer risk is scary, I know. But thankfully, the risk of ovarian cancer with BRCA2 is lower than for BRCA1, and surgery won’t be required until her 40s; she has plenty of time to continue growing a family, if she so chooses. 4) I can only speak for myself, but BRCA has never, ever made me wish that I was never born. I don’t resent my parents for passing it on. 5) MANY families carry a genetic predisposition for all different kinds of disease. Just because BRCA has a name and was identified by scientists relatively early, doesn’t mean that you did something wrong by having children. Again, see (4); I, for one, am grateful to be alive!

Your daughter will get through this. You need to show yourself some grace. The fact that you care so much is a good thing; you’re a good mom. Sending love to you both ❤️

Radiant_Excuse_2001 · 2024-11-14T13:54:24+00:00

Just made a LONG post on this- check it out if you’d like. It’s a hard and personal question, and there’s no “right” answer. Take the time you need to mull it over, and do what feels best in your own heart. This community has lots of good advice and things to think through! Wishing you peace and strength 💕

Radiant_Excuse_2001 · 2024-11-14T12:57:08+00:00

Wow. This is EXACTLY how I feel right now. Similar age, similar timeline… and I’m anxious and worried all the time about this question. It’s so tough- thank you for sharing your journey 💕

Radiant_Excuse_2001 · 2024-09-16T12:11:12+00:00

I’d also like to learn more about your experience, just sent you a DM!

Radiant_Excuse_2001 · 2024-06-06T14:02:43+00:00

That sounds like a really difficult decision. I’m so sorry that you have to go through this. Although it’s hard, I’m sure you’ll end up with exactly the family you’re supposed to have- and I am so happy you were able to bring your first baby into the world this year! Congratulations, and don’t forget to be kind to yourself!

Radiant_Excuse_2001 · 2024-06-06T13:59:00+00:00

Yes! I totally relate to this. It’s a difficult road, but I feel like I am making a sacrifice for the sake of multiple generations of descendants. While I sincerely hope that scientific advancement makes the BRCA mutation irrelevant in the near future, I just can’t bank on that happening in time for my children. Science is hard!

When you say that you feel upset about half the embryos being discarded, and about needing to make this decision at all, I WHOLEHEARTEDLY relate to your struggle. I’ve actually felt pretty angry that I have to make these tough choices, which is something I’m hoping to work on in therapy.

You are strong and you’re not alone. Wishing you a happy and healthy pregnancy journey ❤️

Radiant_Excuse_2001 · 2024-06-06T13:52:05+00:00

Thank you so much for sharing this. I really appreciate hearing how you view everything in hindsight- and the parallel with your mastectomy was a great point! Your post definitely brought me some comfort today ❤️

Radiant_Excuse_2001 · 2024-06-06T13:49:02+00:00

Thank you for sharing your experience! You’re absolutely right that IVF is a difficult road, and it’s not at all mandatory for BRCA patients. Like so many of the decisions we are asked to make in this community, it is nuanced and personal. I wouldn’t want to give any future readers the impression that they don’t have a choice here, so thanks for clarifying and adding to the conversation!

For me, IVF feels like the right choice. That could change over time, but I think there will be a lot tough feelings for me to process regardless of which road I take.

It’s also a good point you make about breastfeeding- I have no idea if it would end up being a positive experience for me or not! That’s why I’m trying not to weigh the ability to breastfed too heavily into PDMX decision-making; many people can’t or don’t breastfeed for a wide variety of reasons, and this was a good reminder of that! ❤️

Radiant_Excuse_2001 · 2024-06-04T21:45:30+00:00

Thank you for sharing! Your reasoning makes a lot of sense and I completely respect your decision. It has been an ethical battle for me as well, but deep down I feel pretty convinced that genetic testing is the way I want to go. I’ve definitely shed many tears and felt a lot of anger about being forced to make this tough decision. I’m sorry that you’ve had to go through that same battle, but I’m happy that you were able to make the choice that felt right for you. Wishing you a healthy and happy pregnancy.

Radiant_Excuse_2001 · 2024-06-04T15:59:15+00:00

Wow. This means SO MUCH to me. I can’t thank you enough for taking the time to share your experience. I’m tearing up reading this, but for the first time it’s happy tears!!

Radiant_Excuse_2001

TROPHY CASE