r/BRCA

Anyone else's parents just shitty about getting tested?

I have one VUS, which I understand most likely is benign, given that most are downgraded to benign eventually. However I have breast cancer on both sides of the family.

Paternal

• Great Grandmother
• Grandmother
• Aunt
• Same Aunt's Daughter

Maternal

• Mother

My aunt and dad got tested because he was treated recently for prostate cancer, and so did the rest of my cousins, and nothing came up. Though my dad barely gave me his results, and it took lots of asking to get any answers. My Genetic Counselors offered to get my mom free testing through their services, as long as she could go somewhere to do the blood draw. And she said "she'd ask her doctors" and nothing came of it.

Medical knowledge being passed down to me in my family has been shitty. Dad had issues with his prostate for 2 years and didn't tell me until he accidentally group texted his sister (same aunt who had breast cancer) and me telling her "I'll alone tell daughter if I get bad results back." Right around Christmas too. LOL. And before that I had a friend at the time know that a different Aunt had melanoma late stage because my parents "didn't know how to tell me/didn't know if I could handle the news" as a kid.

Anyone else experiencing this? IDK if my children wanted me to do additional genetic testing, I'd be like when and where kiddo... No questions asked because I would want them to have all the medical knowledge they needed to make an informed decision.

I’ve been sitting with this information for a few years, I’m early 20s. I have the BRCA1 gene, with an extensive family history of breast and ovarian cancer. I have had a breast lumpectomy for a benign tumor in my teens. My breast and gynecological care team suggested by the time I’m 35 to get a bilateral mastectomy and salpingo-oophorectomy to reduce the risk. That sounds quite honestly terrifying to me, looking through research and potential functional outcomes. I am currently on a birth control patch, if I take it for 5 years it will reduce the risk of ovarian cancer by 30-40%

Is this something to consider for or against based on personal experience? I will eventually look for a second or third opinion, but I didn’t know if someone had personal experience that could help me become aware of more possibilities. Thank you!

FYI: primarily a venting post, with lots of embedded questions.

I received my results 3 days ago and I am overall in problem solving mode rather than panic mode. I know I am in a privileged position to know about this at such a young age and I do not take it for granted. That said, I feel overwhelmed with the amount of decisions I am facing.

I don't want cancer and I want to do everything right. I have always been healthy and have minimal experience navigating the healthcare system. I have moved around a lot so I have never even had a primary care doctor. After this result, I now need a whole team of oncologist, surgeon, gastroenterologist, gynecologist, etc. They all need to work in tandem on a relatively niche problem. How does one even go about finding this? Who do I call, where do I look, what do I do? Am I about to find out how expensive medical care can get? I have never felt so lucky to have a high paying job.

And then there's the mastectomy and ovariectomy. I am quite inclined to both, on a rational level, but this doesn't make these decisions that much easier. For the mastectomy, it is once again a super niche procedure, in my understanding. Boob jobs are common, breast reductions are common, life-saving mastectomies are common, but preventative bilateral mastectomies with reconstruction are primarily for people with these kind of mutations. Who specializes in these? Who can I trust with my boobs? Should I wait? If not now, then when? For the ovariectomy, I don't know what timing is best. I don't want cancer. I also don't want surgically induced menopause. I feel lucky I don't want children, but also what the fuck do I know, as I am 25 years old? Is this diagnosis only further biasing me against child bearing, effectively preventing me from deciding for myself?

Any rational advice in navigating these decisions is welcome. I want to approach this productively, but feel a bit overwhelmed. I am trying to become more knowledgeable and read at least the seminal BRCA papers, but my educational/professional background is data science and math... I am not trained in any medical science. That said, I have to keep making an effort, as no one will ever care about my life as much as I do.

Edit: removed family history background because I felt too exposed and it was just me venting anyway...

4 days out from mastectomy with tissue expanders. i have an infinite position recliner and all manner of wedge pillows but i haven’t been able to sleep for more than 2 hours at a time. it’s really wearing me down. im just exhausted and in pain. when were you able to sleep again after your mastectomy?

There is a trial happening where just your fallopian tubes are removed rather than your ovaries and fallopian tubes for ovarian cancer prophylaxis. The hypothesis is that ovarian cancer is originating in the fallopian tubes and that removal of just the fallopian tubes prevents ovarian cancer. I was thinking about participating in this trial. I’m only 31 years old so the idea of surgical menopause is really intimidating. Has anybody done the trial or only removed their fallopian tubes for ovarian cancer prophylaxis? I’m curious what people’s thoughts are about this or what other people’s doctors have told them.

42f , foubd out i got brca1 when diagnosed with stage 1 breast cancer. was overwhelmed and decided to to lumpectomy and hysterectomy. after chemo and rads i decided i wanted to never do this again, and i did the dmx and diep flap tuesday...my belly is so flat now!! And i can see my vag again 😂😂

I just had my PDMX about a week ago. Went really well, just got drains out (did that myself) sucked, but got it done. Next week I have my plastic surgery for reconstruction and get to start all over again. Overall I have had the usual pain/numbness in my chest. I do seem to have sore spots more on my right than my left. I figured that was due to me being right handed and possibly using that side more. But my muscle above the missing tissue is what is the worst. Not sure if that is typical. I also feel like my taste buds have changed. Foods I normally love I can't stand and feel like they taste strange. I can't find anything online about taste changing just from surgery. Usually cancer treatment changes your taste, but I am not in treatment.

Also if anyone else has done a delayed reconstruction how quick was recovery? Was it similar to the mastectomy?

Thanks!

Tldr: I am sore where my muscle meets the removed tissue. Normal?

My taste buds have changed since surgery. Normal?

I have reconstruction next week (delayed 2 weeks after PDMX) how was recovery?

I’m two weeks post laparoscopic salpingo oopherectomy.

I’m on HRT and was healing up great. Two days ago I noticed a bit of new bruising an inch away from on of my incisions. But it wasn’t tensor or swollen.

Today I went for about a 1.5 km walk. And was exhausted after so I laid down. Got up to do laundry and now I’m experiencing sharp stabbing pain in my internal surgery sights (pelvic area on both sides) and cramping.

Like I only had a couple days of this on day one and two post op. I barely needed meds.

From everything I’ve read many people are back to full activity 2 weeks post op?

But I’m also getting conflicting info online. Some places say 2-3 weeks and some say 4-6 weeks?

I’d love to hear about your recovery experiences.

39 year old BRCA1+ here. Found out about BRCA when I was 34 and began the MRI/mammogram regimen. I had 4 years of clear scans until last fall when my MRI picked up both an irregular mass and a 1.6-cm non-mass enhancement on the left. The mass was biopsied (ultrasound-guided), and fortunately it was benign.

My doctor ordered a 6-month follow-up MRI (i.e. at the time when I would ordinarily have had a mammogram). This time, there’s a 3.7-cm non-mass enhancement on the right side. I need to have an MRI-guided biopsy, and the soonest available appointment is not for 2.5 weeks. I was coping well for the first few days but the weight of it all really hit me today. Just feeling kind of sad for myself for having to go through this. I know the rational way to think about it is that I’m lucky to have this information, this is the whole point of the screening, etc., but it’s still hard.

I have been planning since I found out about BRCA to have a double mastectomy in my mid-40s. My mom was cancer-free until 69, and my kids are 4 and 2 so was just hoping to wait until I was at a slightly less physically demanding phase of parenting.

Anyway mostly just venting since I know many of you can relate much more than other people in my life can.

Hi! I had er+/pr+ stage 1 idc almost 10 years ago at age 29. I’m getting close to my bilateral oophrectomy for my brca1 status and curious if anyone else with a history of hormonal breast cancer was able to convince their doc to let them use HRT? I’m terrified of how i will feel, not to mention the known risk to heart and bones (already have osteoporosis!) and mood and… anyway. Looking forward to hearing from you all and happy to answer any questions!

Gonna cross post in r/brca too!

I feel silly even asking this question because I’ve already had one side done. That was about six months ago. I was going through a separation at the same time and I honestly don’t remember anything about what I looked like post surgery because I was so preoccupied with other things. I just had the right side completed 2 days ago and it looks deformed. There’s a fold in the cleavage area where it seems the implant should be. It looks very odd. I don’t remember if this is normal. I vaguely remember that it took some time for the other side to settle, but I don’t remember this weird deformed cleavage. Does anybody have experience with the implant looking like this early post-op and eventually settling into that space where cleavage should be?

I should also mention that the right side has struggled quite a bit. I had fat necrosis which required the expander to be removed along with some tissue. I was flat on that side for two months before he placed the expander back in to complete that side. The skin was definitely tighter.

Earlier this month, I found out I had the BRCA2 mutation during a stage IV cancer diagnosis at age 32.

I don’t say this to scare you. I say it to encourage you stand up for yourself.

I’d had a normal breast exam in October and had never been recommended genetic testing despite a paternal grandmother with breast cancer and a father with lung and skin cancer (which my gyno and PCP knew about). My dad’s oncologist told him not to get tested because it could fuck up his life insurance, dad never thought to mention this, and no one gave the subject any more thought.

And now here I am. In the worst case scenario for a lot of people on this sub.

My doctor said my breasts were dense, probably I had a cyst, the mammo wouldn’t catch anything. I made her submit an order. Even after I was referred for a biopsy for a suspicious mass, I had to proactively demand genetic testing from my doctors, which I paid for out of pocket. At every scan, I was told I likely had fibroadenomas, even though I had a golf ball sized masses with ragged edges. I moved up appointments and showed up at radiology clinics waiting for cancellations. They said I was anxious. I thought the ultrasound tech was lazy with my armpits. I made them redo it. I was right. Infected nodes.

Every scan got worse. Two oncologists told me I would die in 10 years and there’s nothing else to do. I don’t think they’re right based on available research and finally found a doctor with a treatment plan that considers me as a whole person.

It is stressful, it is hard, it is awful.

But if I’ve learned anything from this mutation, it’s that more information is powerful, you have to trust yourself, and you have to be brave. I’m not a proponent of needless medical anxiety, but I’ve known my body better than anyone in this process and I’ve been right about everything. I don’t push when there’s no reason to, like I thought my brain MRI was overkill (it was), but if something feels off, please advocate for yourself.

If you’re wrong, you’re wrong. But let the mutation be the problem, not people who won’t listen to you.

I sincerely hope no one else ends up in my spot.

I am 34 and just found out I am positive for the BRCA2 gene mutation. Despite preparing myself for the news (or so I thought) I am in shock and am feeling kind of lost.

My husband and I got married last year and our goal is to start trying for a family this fall. We are waiting for certain reasons. I havent seen of many women around my age, or older, who have gotten tested. Most find out younger. Finding out now is terrifying and I know I have a lot of tough decisions to make and I dont have as much time as I would prefer.

Not sure why I am even posting. Guess I just wanted to vent somewhere. The only people I have told are my parents, sister, and husband.

Hi all. I am 41/F and I have severe health anxiety… I have a long family history of breast cancer (or cancer in general) and it was suggested that I take the genetic testing. I am waiting for the results, and driving myself crazy. I hadn’t even been to the doctor in years in fear of bad news (bc that’s what always happened)… I am proud that I took the first step but while I wait, I have to know…. Am I just doomed?! Every single older female on my mom’s side of the family got breast cancer shortly after they turned 60. I do have a second cousin who’s mom is my great aunt (also had breast cancer) and she is 63 and is positive for the BRCA gene (not sure which one) and she has not developed cancer. My mom died at 53 from lung cancer that was apparently not from her breast, but still cancer. All that being said- my train wreck doesn’t stop there. My dad’s mom and my dad’s sister both had breast cancer. Neither passed away from it, but my dad and his brother also have had low end prostrate cancer (that was caught very early and is now gone), but I am generally wondering how bad off am I?! I guess I’m just looking for comfort or support… maybe someone else in the same unfortunate boat. I’m planning on a mammogram in the next month- super stressed about the results of that too. 😢 I just don’t have my mom to talk to so I’m really beside myself……. It also doesn’t help that I don’t have insurance, so I’m just afraid of everything honestly. 🙃

Hugs to anyone going through anything similar. 💖

I am looking for recommendations for supplies and items that people wish they had for reduction/mastectomy recovery. I am having reduction and lift in 6 weeks and prophylactic mastectomy in the winter. I would like to get supplies ahead of time and just have a boobie survival tote since I am going to have several surgeries (I am also doing a fat graft after implant swap). I know i need a wedge, button tops/pj's and slip ons. I would really appreciate any other advice this community has. Thank you all so much in advance. This community has been very helpful in my mental preparation for this journey already!

Hi everyone. I have a long family history of both ovarian and breast cancer on both sides of my family. I’d really love the peace of mind of being tested for the BRCA gene as none of my affected family members are willing to be tested 🥲

Has anyone been through public testing recently? If so how long did it take from referral to testing/results?

Did your GP refer you directly to the Adult Genetics Unit at the RAH?

I know my situation isn’t urgent but I’d really appreciate hearing about other people’s experiences. I feel like there isn’t a lot of clear information available and I’d love to understand the process a bit better.

Thanks so much!

hi all, if i were to get a DMX AFC do I still need a plastic surgeon or does the breast surgeon get it all done? Or is this dependent on the breast surgeon? I was confused when I went in for an appointment with my breast surgeon she did not even offer AFC as an option and instead gave me a sheet of plastic surgeons. thanks!

Hello! This group has been such a great resource, and I am so thankful for the help I have received thus far.

I am on the thin side, and will be undergoing reconstruction with over the muscle implants. My doctor assured me they would be able to locate enough fat in my thighs for the fat transfer to help cover up rippling. But, I am still feeling a bit apprehensive about aesthetics. Either way, I am moving forward with the mastectomy/reconstruction. But, I am wondering how those with low body fat feel about the look of their implants. Thank you!

hi! this is my first time posting here, and i just joined the community. i just turned 21 in the last month, and got my first pap smear. my gyno/womens care is super supportive and involved in prevention care. i mentioned family history of some breast cancer, and some brca positives. i was told about the tests and i decided to do one through the doctor, which she very much suggested.

fast forward to yesterday. i got the results and im positive for a mutation in the brca1 gene. i finally got my dad to tell me more about his side of the family. i always knew there was some cancer, but oh boy. one of his sisters is positive, and so is her daughter. both have had breast cancer, but caught it very early on. my cousin is like 34 and has two kids, and i’m just finding out she’s had cancer in the last 5 years. they’re both doing great and are cancer free, but i don’t know why im finding this out now lol.

my dads mother and her mother also both had breast cancer. again, both had no issues and found it early enough. i guess my dads logic is that “well no one’s died of cancer” so it wasn’t a big deal. i wish i had known a little more about this history earlier. i always knew there was some, and i might be crazy but i feel like i always had a feeling i was positive.

anyways, reading about everyone’s stories and experiences on here have helped a ton while accepting the fact that i have a pretty high chance of getting cancer at some point in my life. and i know people always say”there’s a chance you don’t though”. i just don’t want to sugarcoat it and get my hopes up. the odds are not in my favor but so what. i’ll just be expecting it when the time comes.

i’d also love and accept any advice, especially on yearly checkups, self checks, and anything else. i’m really looking forward to being a part of the community ❤️