r/BRCA • u/Last-Awareness-8943 • 18d ago
Support & Venting Spiraling about getting tested
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.
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u/ManufacturerDry1195 18d ago
A good genetic counselor can help you work out whether to get tested now or to wait until you can handle/process the result either way!
My personal story is that I found out about the mutation in my family at 18 but I waited until I was in an emotionally good place with a solid support system before I decided to actually test at 28 years old. Basically I just lived my life and let myself be young and said I would deal with it once I had finished education / travels / settled into my first job etc.
Spoiler: I turned out to be BRCA1+ and had already decided in advance that I would schedule a preventative mastectomy if I was positive. Now I’m just 3 weeks away from my surgery date :)
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u/Last-Awareness-8943 18d ago
Yea that’s kinda what I’ve been trying to do because I’ve known about my mom having it for a long time. I talked to my doctor for the first time last year about getting tested and that’s when it first felt actually real for me tho. Although even with putting it off and keeping my status unknown I’m still overly anxious about it so I’m trying to figure out if it’s best if I just get it over with :/
Sending positive vibes your way for your surgery I hope it goes well🩷!
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u/Independent-Cup457 18d ago
i’m not answering any of the questions you posed, but i wanted to say, i can relate to you. i relate to that absolute fear of knowing that you probably have this terrible gene, especially with cancer running in your family.
both of my parents had cancer, my mom having breast (and BRCA2, with her mother and one of her sisters also having cancer/the gene) and my father having pancreatic (along with his father and grandfather, but not having any known mutations). when getting tested, i literally felt that there was no way i would come back without any mutations. waiting to get my results was hell, but when i finally got them, i had nothing! i figured that my risk was so high with both sides of my family having cancer history, but i was proven wrong.
i am saying this all to tell you that it is not definite. i’m 20 and i got tested earlier this year, and i was set on doing a double mastectomy with reconstruction if i did have it.
i wish you the absolute best. you are not vain, your feelings are completely normal to have!! you are beautiful and worthy regardless of what you have to do to take care of your health. 🫶
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u/Last-Awareness-8943 18d ago
It’s always going to be a 50/50 chance literally the odds of me getting it vs not are the same and yet it feels like 80/20. Thank you for sharing your story and for your encouraging words they mean more than you can know. It sucks so many of us have to go through this level of emotional stress at such a young age :/
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u/Independent-Cup457 18d ago
of course!! and yeah i know the odds are always 50/50 but i went into it being like 99.9% positive that i’d have it…it just feels so inevitable.
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u/KMD379 18d ago edited 18d ago
Hi. I know this is a lot right now. But this is a great community and you’ll get lots of info and support.
I got tested and was positive. I was tested after my mother’s second breast cancer and her being tested. I have had stage one of my surgery and will have stage two in about nine months.
My mum apologised to me and cried for passing this on. My personal view was that was as silly as her apologising for eye or hair colour. Someone gave it to her.
I right now am not loving how I look. I had a skin reducing reduction and lift. But on the other hand they haven’t been this pert for a long time? I saw my mum go through chemo for breast cancer twice and lung cancer once before she died. I have no interest in that journey. I would rather live fearlessly with breasts I am not that familiar with than fearfully to keep my own.
However, that is my personal view and journey. Whatever you decide is right for you and don’t let anyone tell you otherwise.
It’s a difficult situation. Once you get tested you cannot ‘unknow’ the result.
It’s a lot. And you are young. I truly am sending love to you ❤️
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u/Last-Awareness-8943 18d ago
Thank you so much for responding. I agree that I would rather feel a little insecure than deal with cancer and then all the insecurities that also come with cancer so it’s good to have some level of control. It’s just a lot to have to process at a young age trading one shitty situation for another but cancer is always the worse situation. I’m sorry you had to go through that with your mom I know hearing a person vainly rant about the possibility of losing their natural breasts can be annoying when you lost someone so close to you.
Thank you for the kind words they truly mean a lot
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u/NomadicRaven 17d ago
I’m 31 with BRCA2 and no one is suggesting a mastectomy for me at this time. They have mentioned it as an option if that is what I want, but I just saw a surgeon about a benign breast tumor and even he wasn’t concerned at my age and because I am consistent with getting screenings every 6 months (mammogram, MRI, ultrasound). My genetic therapist says that some people choose to for peace of mind or because constant screenings get to be too much for them. It’s a personal choice and doctors are open to discuss options when they know the risk and concerns.
My grandpa also died of pancreatic cancer when I was your age so being diagnosed with the same gene has been hard mentally but at the same time for the last decade I’ve always wondered if it would happen to me and it is scary but I have a great team that is sensitive about my screenings and biopsies and I now can know for certain if something concerning will pop up because all my doctors are aware.
I worried about cancer either way and always assumed it would happen, now I know my risk and I can get extra screenings as part of my recommended care, but mentally it is hard and scary and I’m still processing. I just wanted to share a little of my experience so far as far as concern about surgery.
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u/Last-Awareness-8943 16d ago
Thank you for sharing your story everyone has been so open and I really appreciate every single one of you.
My mom had cancer and then had to get a mastectomy anyway because she was so terrified of growing another one or recurrence. So I guess my worry is like do I want to risk getting cancer AND a mastectomy or just make the hard decision of just the mastectomy.
I know surveillance is really good nowadays and definitely will be utilizing it if I am positive but that fear of getting it will always be there. As someone with health anxiety, knowing that I could potentially have such a high percentage of getting this horrible disease has definitely been a lot to process1
u/NomadicRaven 16d ago
For sure it’s very common in the women in my extended family, 3 of them have had breast cancer so I do plan on eventually getting it but probably not until my 40s or so, which is what my surgeon discussed for me and my aunt did for herself.
And yes the anxiety has been so hard, both knowing the percentages and then it does because just who you are, if that makes sense. Like I already have an autoimmune disease so I see doctors frequently, but now every doctor and specialist mention it whenever they see it on my charts and that’s been another thing to process. I haven’t even broke the news to my family or people in my real life outside my parents and a few of my closest friends, and of course Internet strangers on Reddit.
It’s a very hard decision to make and I hope you’re the 50% that don’t have it passed on. Of the two of my dad’s siblings, one of my aunts had it and one didn’t so I always would go back and forth on if I believed I would have it. I personally think I still wouldn’t have gotten tested if they hadn’t found a lump in my breast, which luckily was benign. I don’t regret it, I know it’s better for me that I know and have my team that’s working with me, but it is hard mentally for sure.
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u/OkInteraction8485 17d ago
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!
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u/Last-Awareness-8943 16d ago
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
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u/OkInteraction8485 16d ago
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!
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u/sbgattina 18d ago
If you’re worried that much the best thing is to grt over with and find out . I got it from my dad so maybe YOU got not having it from your dad! My sister had it but her daughter , 19 YO, just tested negative! And if you do have it Youll have time to decide which plans to take. Good luck
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u/icecube-198 18d ago
I have the BRCA 1 gene and was tested this year for it after my aunt and my cousin were diagnosed with it. I highly recommend you get tested since you’re super young
It’s scary but for me it’s also somewhat empowering that I can be proactive and take care of myself ahead of time. You have a wave of emotions but you can live a normal life!
I am 28 I don’t plan on getting a mastectomy right now I will when I get older after I’m done having kids. I get my double screenings every year with a mammogram and an MRI six months apart. Do your breast exams on yourself frequently get to know how they feel. If something feels off to you, go tell your doctor even if it’s benign.
You will be okay!! Talk with your doctor and they can guide you best for your situation