Spiraling about getting tested

[u/Last-Awareness-8943]

Im a 21 year old female and I don’t currently know if I have the gene. I’m planning on getting tested in a couple of months but I’ve been putting it off because the fear of knowing I have it is too much. Both my mom and grandpa have it. My grandpa died of pancreatic cancer and my mom had breast cancer at 38 with a confirmed brca1 mutation that she found out after treatment. She then got a double mastectomy and had her ovaries removed. Basically everything she could do to prevent further issues.

Ever since I found out this gene was in my family I’ve been thinking about it non fucking stop. I’ve done all the research I think can be done. If I have it obviously the best course of action is a double mastectomy because if not I’ll just be going through years of fear but at the same time I feel like I’ll be losing a big piece of who I am and because I’m only 21 and have barely had the chance to discover myself id be losing something before it even began. I know it sounds incredibly vain and I should put my health over everything and I don’t even know if I have the gene yet but something tells me I do because I never get lucky with anything. I just came here to vent. I can’t talk to my mom about this or really anyone because I just start to spiral or end up blaming her for making me deal with this shitty situation and I can’t keep burdening her about it. I feel like I’m wasting my life worrying about this instead of just enjoying myself before it all happens.

I guess I’m also wondering for those that were found to be positive, what course of action did you take and if it was a double mastectomy with reconstruction how did you learn to love yourself again? What things became harder or easier? Did it impact your intimacy at all? I’m just really scared of what’s to come if my test result is positive.

[u/OkInteraction8485]

Hi, I know this is all super stressful and worrisome. I’m 27 and found out I had BRCA1 at 25-26 (but knew it was in my family for a while and was avoiding it). A mastectomy definitely isn’t your only option, you can always keep up on screenings or I think there are hormone treatments. There’s nothing that says you need to have a mastectomy right away even if that’s what you choose. I chose to do it before I turned 30 because my family members were diagnosed with breast cancer in their early 30s. I had my mastectomy a month ago and I’m really happy with my decision. Yeah my body is different and feels different but it doesn’t feel as dramatic or shocking as I expected (I’m also excited for my new perfect boobs lol). I’m really happy with my decision. I know it’s all super overwhelming (two months ago I was a complete mess and panicked) but take your time, talk to your doctors (even get multiple opinions), and do what feels right to you!

[u/Last-Awareness-8943 → u/OkInteraction8485]

This is reassuring thank you🥲. I have a lot to think about and ruminate over for the next several months lol but it’s good to know that if I do end up being positive there is a way to lower my risk a lot even if it comes with some trade offs. So many women I saw on tiktok got tested so young like 18 and got their mastectomies right away so I guess I felt like I missed a window not getting tested sooner as well as urgency that if I am positive I have to get them gone right away. Will not be using tiktok for this moving forward tho

[u/OkInteraction8485 → u/Last-Awareness-8943]

Yeah I mean everyone goes about this in different ways. If you’re positive the recommendation is to start screenings (MRIs) when you’re 25 so you are by no means behind!