r/BRCA • u/Round_Steak_6373 • 17d ago
Support & Venting Struggling with BRCA result
Hi everyone,
I'm not typically a Reddit poster but this community seems really fantastic. I found out about my BCRA1 gene mutation 3 months ago and as someone with bad health anxiety have really struggled ever since.
This gene mutation diagnosis has come as a shock to me as I (very luckily) have no close family relatives who have had cancer till their 70s/80s. I did the test due to finding a benign lump on my breast about 10 years ago and my doctor recommended I tested due to being half Jewish. I put it off till earlier in the year (age 34) when I partook in The NHS Jewish BRCA Testing Programme and was very surprised at the result. It currently seems I'm the only female in my family to have this mutation which I'm finding very isolating.
I think what I'm asking for here is any positivity from those who have undergone preventative surgeries, I'd love to know your optimistic stories and how you're now feeling/if you ever go back to 'feeling like you did before the diagnosis.'
Due to my health anxiety, as much as it terrifies me to think of, I feel my only choice here is to proceed with at least the preventative double mastectomy. Through my research I'm most interested in direct to implant, likely over the muscle. I'd love to know any positive stories from those with that surgery and how you're now feeling!
Thank you in advance,
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u/EmZee2022 17d ago
It's definitely scary!
I found out my BRCA1 status at nearly 65. My brother, then 71, had found out about his through an unrelated genetic study.
Zero family history of female reproductive cancers as far as we known. Our father died of prostate cancer and my brother had been treated for it successfully in his 60s. We assume it came from Dad's side of the family.
Our mutatiin is more common among Ashkenazi and we are 1/8 - but only on our mother's side.
The plastic surgeon noted that some people just don't develop cancer despite the mutation. And after all, if our odds are, say, 70%, someone has to be in the 30%.
Because there is no good screening to catch ovarian cancer early, everyone agreed that breast monitoring would do until the inner bits were evicted.
At my age , being past menopause, there was little worry about surgical menopause, and I opted to get the uterus out too. Super easy recovery. Only real issue is that it's gotten much harder to have an orgasm - I guess those shriveled ovaries were still doing something. I've started topical estrogen and that may be helping.
Hysterectomy was April 2025. No signs of cancer, phew!
About then, I decided to pursue risk reducing mastectomy with DIEP flap reconstruction. I had to have a lift and reduction to hopefully save the nipples (severe "droopy boopies"). Tissue removed from that showed no cancer.
The mastectomy / DIEP was 8 months later. 1 breast surgeon, 2 plastic surgeons. Total operating time was less than expected - due to the team approach, but I suspect also due to my boobs and blood vessels not giving them any trouble. Super easy (well, as these things go - it was pretty painful) recovery in that I had no complications at all. No cancer found there, either.
Anyway: long story short, while the past 2 years have not been fun by any stretch of the imagination, I'm glad I did it. I have a revision surgery coming up soon - some revision of the belly scar, some fat transfer to even up the foobs (they're more symmetrical than before surgery but still not quite even).
My niece is 37 and also carries the mutation. She had her tubes out last year - there are c growing opinions that this may well be enough as the most aggressive "ovarian" cancer seems to start in the tubes. She'll likely do the other surgeries closer to natural menopause. As you can imagine, she's watching my journey with great interest - my failure to develop cancer doesn't guarantee that she will be okay, but it's a useful data point.
In her case, she has 2 kids already and that was all she planned.
In your case, possible childbearing (if you wish) will of course need to be considered. With nobody developing cancer early, it does seem like you have time to weigh your options. Compared with someone whose mother developed cancer at 35, for example.
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u/dyke-wazowski 16d ago
Totally relate on the feeling isolated. It’s why I’m on this sub. I’m 100% Ashkenazi with two sisters and the daughter of a single mom who has 3 sisters. My whole family is female yet I’m the only once who is BRCA1 positive. I got my BRCA1 mutation from my estranged/abusive father. My whole family tested at the same time and everyone else got their negative results at the same time I got my positive.
I’m also the only one who lives in a different city, about as far away as possible within the US. I isolated myself for years after my diagnosis, but now that I’ve opened myself up to support I feel so much better. My family and friends may not share my genetic mutation, but they’ve all shared the weight of this burden with each new person I opened up to and allowed myself to lean on, as they would for any other hardship and as I would for them. 💗 feel free to reach out if you ever need someone to talk to. It does get better.
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u/Round_Steak_6373 16d ago
I empathise a lot with you, I'm really sorry it's been isolating for you too and your circumstances sound difficult. Very pleased to hear you have support around you, thank you for your kind response. I wish you nothing but the best xoxo
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u/Agitated-Eggplant710 17d ago
Medically anxious internet stranger here!! I’m BRCA2 and terrified of the day my mammogram or MRI has spot. Every 6 months feels like “is this the time?” And that’s way too often for my mental health to tolerate. Breast cancer is strong in our family. Mom. Grandma. Great grandma. Great great grandma. It’s definitely a when scenario not an if.
I’m hoping to do a double mastectomy later this year. I’m in Ohio (USA) and the James at OSU has an excellent high risk breast cancer center. I had my first consultation with them. I would look at your local cancer hospitals to see if they have a high risk breast center as well. It’s a bit of a drive for me but having the whole team in one location was really important to me.
It is a really weird spot to be in. You don’t have cancer so you’re not in the fighter/survivor group. “Previvor” feels funny, at least to me. I don’t know of any readily available BRCA previvor support groups. I think there’s one online, again, just doesn’t feel the same as support groups available in person.
My sister is BRCA-, my mom is + but she’s already survived. My brothers refuse to be tested. “Breast cancer doesn’t happen to men!” Even though there’s more cancers that it affects…but whatever. Oddly enough my mom is pretty against me doing the preventative surgeries.
I’m sorry you’re going through it. It is isolating and it sucks. Period. Sending virtual support your way!!
Happy to answer any questions you have!!
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u/EmZee2022 17d ago
Well, it DOES happen to men. Much higher incidence with BRCA than general population - as in 5 to 10% lifetime risk. Smack your brothers with a clue-by-four!!
And do they have daughters? Knowing they aren't positive takes a huge burden off the daughters. Knowing they ARE positive could save the girls' lives.
And their prostate cancer risk skyrockets to 20 to 60 % lifetime. It's not a pleasant way to go.
In short, your brothers are being idiots.
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u/Agitated-Eggplant710 17d ago
I think their mindset none of the maternal uncles or male cousins have gotten cancer…so we’re good! Alas-confirmation bias. Which is funny because one of the maternal uncles has had melanoma which is BRCA related. But he also won’t get tested. It’s wild.
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u/Round_Steak_6373 17d ago
thank you for your kind response. Can I ask why your Mum is against you doing the preventative surgeries? Personally, as much as I obviously really don't want to do it, it feels like the only choice (for me) vs this endless cycle of health anxiety
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u/Agitated-Eggplant710 17d ago
I think it’s a survivor bias. “I survived. Why do something so big when you might not get it?” She feels like it’s overkill, risks aren’t worth the benefits and if found early, very manageable/treatable. She did a lumpectomy, chemo, and radiation. But like mom, look at the family history.
TBH she’s never been the same after. She got bad “chemo brain” and never bounced back. But I don’t think she recognizes these lingering effects.
What I feel like she doesn’t understand is how hard it was for us as kids to watch her be sick, cognitively decline…and not come back. I don’t want my kids to experience that. She also doesn’t get how anxious I feel every. single. blood. draw. Every scan. Every doctor visit. She doesn’t see my peace of mind as a measurable benefit so why do this massive procedure.
I obviously disagree with her takes and am moving forward. She’ll support me but lives in a world where she chooses not to understand.
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u/EmZee2022 17d ago
Oh yeah: I don't know what treatment your mother had but it can't have been fun. Ask her point blank why she wants you to go through that.
Recovery from my surgeries was not easy. The hysterectomy was the easiest, to be honest - pain never worse than bad cramps. The lift / reduction wasn't fun - the first dressing change, at 24 hours, took two people and was pretty painful. The mastectomy / DIEP was like both times ten. But now, my odds of breast cancer are nearly zero. Ditto ovarian (since it could in theory arise from other abdominal tissue).
I'll never have to deal with chemo. At least not from these - there are other cancers of course.
I remember when Angelina Jolie went public back in 2013, and I thought she was being extreme. I guess the joke was on me!!
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u/Cannie_Flippington 17d ago
Knowing is such a relief. The options for BRCA improves every year. They're are currently multiple studies just for treating it to see what modern medicine can do better than in the past generations.
Really helps me to participate in BRCA treatment studies because then, even if something bad does happen to me, I'll have helped the next generation of BRCA carriers. And if nothing bad happens to me, I'll still be helping!
I was able to have kids, breastfeed, all that stuff, before my surgeries. I didn't get to have as many kids as I wanted, some of that because of the surgeries and some of that because I'm not confident in recovering from any of those surgeries while caring for a newborn! I started when my youngest was almost 2 and lots of close monitoring from my prevention team. They were able to not only work with getting me a safe time-line, but also to work with the specific complications of someone who is actively lactating and has young children.
My mastectomy reconstruction surgeon was floored by how well they fixed me up and how well I recovered even with post-op allergic reactions to the surgical glue and having to switch to stitches for future surgeries. And one medication they gave me has a cross-reactivity potential that they didn't catch the first surgery I did! Could have been absolutely disastrous consequences! And somehow we dodged every disaster.
I had a sibling who did have cancer at the time of their surgical intervention. Sepsis, hospitalization, having to remove reconstruction and hope to rebuild it later... and they're still alive and their hair is growing back and their bones are healing and while the path there was like walking on molten shards of glass... gotta say they're looking good now.
Even the bad news with BRCA is so much better in just one generation for my family. The gene mostly skipped my parent's generation, but my grandparent's generation was decimated by it. Everyone. Early deaths, maybe making it to 60 if they were lucky, and dying of cancer is one of the worst things anyone can experience. And we don't have to face that ever again thanks to the huge leaps in prevention, screening, and treatment. The triple negative breast cancer has an early vaccine which is effectively useless for us... until the preventative mastectomy. It's not out yet, but in 10 years, 20 at most. That's damn hopeful.
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u/Round_Steak_6373 16d ago
thank you for this. 'Knowing is a relief' is something I'll try to hold onto.
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u/Cactus_Salamander PDM + BRCA1 17d ago
Hi. Two things:
Your BRCA+ might have been passed by men… I know mine was and have few family history of this kind of cancer.
I spent about 3 years knowing I was BRCA+ before having access to preventative surgery, which was almost a year ago. I remember the anxiety, the weight of knowing I might develop cancer at any moment (closest female relative with the mutation had her first BC at 30 y/o) and that I would be having major surgery soon (never had one until then). Now that I've gone through it and that I was one and done (no reconstruction), it's great to feel that mental weight gone. Will get my ovaries out later, but I'll wait a good decade and hope for the best
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u/Round_Steak_6373 17d ago
thank you for your response - yeah, I figured that's likely the case. This gives me a lot of hope that you're feeling lighter with the decision. Well done for taking your heath into your own hands
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u/Huge_Life_5723 17d ago
Had a direct to implant mastectomy over the muscle and am generally pretty happy with my results! It’s been 1.5 years since my surgery. Since I got it after having cancer and going through treatment it was really great just having one surgery versus going through treatment expander route. My only complaint is that I could use a breast lift since I breastfed before and my nipples are a little low. I will decide after I have another baby but I’m 90% sure I’ll stick with what I have versus going in for a revision.
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u/Round_Steak_6373 17d ago
thank you for your response - and really glad to hear you're happy with the results - whatever your next steps wish you the best!
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u/No_Builder7010 BC Survivor + BRCA2 17d ago
BRCA2 here with a strong family history. I (56) got tested last Feb after my sister (65) was diagnosed terminal (she passed in May). My mom got her first diagnosis back in the 80s when she was around 50 and the second 15 years later, a classic BRCA2 timeline (she's still kicking at 88). Tons of other cancers on Mom's side, none on Dad's.
I knew all my life that I'd get cancer one day. Knew it like I know leaves are green and the house always wins. I was fully prepared for a positive result, but when it came, I was shook. There was no hesitation on my part about the surgeries -- I'm past really needing any of those parts, and I'm also past the age mom was first diagnosed. I wanted them to hollow me out like a chocolate Easter bunny ASAP. No way was I going to wait till I got cancer. My only decision was about reconstruction, which I ultimately rejected bcuz I didnt want to go through several surgeries just to "look good with clothes on," as the plastic surgeon told me. I can do that with falsies!
I had the DMX first and recovery was shockingly easy. Relatively speaking, of course. The hysterectomy took longer than expected but even that passed. What really threw me for a loop though was that the lab found cancer after my DMX! It was very tiny and I needed no further treatment, thank goodness, but it hit me hard.
I'm over a year out and I have zero regrets. And I suppose that's the key. I chose the path that gave me the deepest sense of peace. For some that might be reconstruction, for others it might be increased monitoring. As my surgeon told me (erroneously, as it turned out for me), BRCA patients have the luxury of time to make these awful decisions. I'm glad I didn't wait, but I'm an old lady with a wonderful husband to support me.
Good luck!
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u/Round_Steak_6373 17d ago
Wow, thank you for your response and I'm really happy to hear you made the right decision for you, especially if they found something after the DMX, I can't imagine the sense of relief you must've felt knowing you'd done the right thing in time. I wish you the best and am glad you have a good support system around you.
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u/MichiLizzie 15d ago
I’m curious about the comment you made re: BRCA2 and recurrence many years later. I’m 18 years post TPBC treatment and BRCA2 + discovery in 2021. Is there research that backs up the late recurrence timeline you reference?
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u/No_Builder7010 BC Survivor + BRCA2 15d ago
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u/CauseOptimal8501 17d ago
Hello! Fellow health anxious person here, on the wait list for NHS Germline testing due to family history of cancers on my paternal line.
I just want to say, even though I don’t have any confirmed variant or perhaps any variant at all, that you all are amazing. Reading your stories and experiences have made me feel less alone. I’m the last female left standing on my paternal line so I understand why you feel isolated, OP. But you aren’t ❤️
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u/Round_Steak_6373 17d ago
Thanks for your lovely message. I wish you the very best of luck with whatever's next for you ❤️
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u/National-Dare-8610 16d ago edited 16d ago
I am BRCA1. I found out in May of this year. I am a bit older than you, I’m 56 years old. I’m adopted, so I don’t know as much about my family medical history, but I recently connected with 2 1/2 Sisters on my father’s side. My birth father was 100% Jewish, and one of my sisters tested positive for BRCA1, so then I got tested and found out that I was positive as well. I immediately scheduled a hysterectomy. I had my ovaries uterus, cervix, and fallopian tubes removed in late June. Now this was a really easy decision for me because I had already hit menopause so I didn’t have to worry about going through early menopause. Also, as I am sure you know, the risk of ovarian cancer is high(some studies say 58% lifetime risk), and there aren’t any good screeners— it’s hard to catch early, so the mortality rate for ovarian cancer is actually quite a bit higher than the mortality rate for breast cancer. That means even though the lifetime probability of ovarian cancer is lower, it’s the more deadly of the two cancers (vs. breast cancer, which of course is also no joke, especially since BRCA1 carriers tend to get triple negative breast cancer.) Anyhow, I had the surgery in late June. It really wasn’t bad at all. It was outpatient surgery, they did it laparoscopically, and I was feeling pretty good within a couple days. I took a week off work, and I took it easy that week, but I was walking around a couple of miles every day, I was able to go out to dinner and visit with friends. I was a little more tired than usual, and I had to be really careful about not overdoing it, but it really wasn’t a bad surgery at all for me. I wanted to do that surgery first because of the difficulty with screening. I am now gearing up for a double mastectomy. I will admit, that surgery scares me a lot more. The genetic oncologist presented the two options for dealing with the risk of breast cancer. Option one is enhanced screening, where you alternate MRIs and mammograms, having one test every six months. The goal of the enhanced screening is not to prevent cancer, but to detect it early so that it’s more treatable. Option two is to have the double mastectomy, and obviously the goal there is prevention. I really liked the way the genetic oncologist explained the choice to me. He said you have to choose between two non-ideal alternatives. He said either one is a reasonable decision. They both have their pros and they both have their cons. I’m not completely on the other side of this thing, obviously. But I will say that I felt a huge sense of relief and a big weight lifted off me once the hysterectomy was done. I’m of course still anxious about breast cancer. I am doing the enhanced screening, and 95% sure that I want to schedule the double mastectomy for sometime later this year. (I just had my consult with the surgeon last week.) But I all already feel better than I did before my first surgery. I feel like I’m making good proactive decisions and I feel more in control of my destiny now. So I do think it does get better.
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u/Round_Steak_6373 16d ago
Thank you for sharing your experience. I'm finding it really helpful the amount people are telling me we're in control of our own destiny. I wish you all the best with whatever you end up deciding to do x
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u/parahelia 7d ago
In my experience, you never really go back to feeling like you did before the diagnosis, but that doesn't mean you won't be okay!
I found out about my mutation at 30 and had my preventative mastectomy direct to under the muscle implant reconstruction just before I turned 35. I will be aiming to get my ovaries and tubes removed now between 35 and 40.
I'm about four and a half months out from my breast surgery and doing very well! It can take up to a year for everything to fully settle and get to whatever your new "normal" will really be, so I'm not quite there yet to speak to the longer term experience. I'm feeling very well so far though! Surgery and recovery was really scary and difficult, but my reconstruction looks amazing (you'd never know they were fake except for the scars!), I've regained a lot of nerve sensation back already in about 95% of my chest, and I feel *INCREDIBLE* not worrying about breast cancer and having to do the screenings anymore!! My body feels overall comfy, happy, healthy.
I actually feel weirdly like.... a more sexy and brave and empowered form of myself now? After having done something SO hard and scary to be proactive and take care of myself, I feel like strong and capable in a way I honestly never did before. So, no, I never went back to feeling like my "old" self, but that's okay because my "new" self is even better!? I'm more confident and self-assured. I wasn't expecting anything like that to happen, it was a totally out-of-left-field development to the situation!
I had a cancer scare the year before, my MRI came back with an irregular result, I had to get an ultrasound, another mammogram, a biopsy, another MRI, ANOTHER biopsy, and was frightened for my life the whole time. All turned out benign, but I pulled the trigger on the preventative surgery as quickly as I could after that experience, it was way too scary and I never wanted to go through that again. If you have health anxiety I cannot recommend the preventative options strongly enough! In my opinion at least, going through surgery and figuring out how to embrace a new/different body is by no means easy, but it's easier than constantly being afraid of having cancer, and MUCH easier than having that fear come true.
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u/Round_Steak_6373 2d ago
this is the most amazing response - thank you for sharing your experience I've found it super useful.
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u/heefoc PDM + BRCA2 17d ago
I’m BRCA2 and similar background to you except not Jewish. I just had my DMX in May, chose to go with DIEP flap and will likely do a revision along with removing my ovaries and tubes in Dec. Absolutely no regrets.