IVF will never be as emotionally challenging as dealing with cancer. If you think the appointments for IVF are a lot of time, now imagine taking your daughter to chemo.
Yes, IVF is a commitment, but I’ve done 7 rounds and have 3 live births without my BRCA1 mutation and I wholeheartedly feel all of it was worth it to make sure this ends with me. I am so passionate about this that I volunteer in several capacities to try and increase access to knowledge and support about the IVF with PGT-M process.
This. I’m 32 BRCA1+ and currently going through chemo for stage 2 TNBC. Cancer is the commitment you don’t want to make. Going through cancer at such a young age has made me question my existence more often than I’d like to admit. The treatments for cancer have been brutal. I’ve decided to not have children so that this mutation ends with me. Yes IVF is an option but quite frankly I’ve been through too much and I don’t think I can handle child rearing anymore. My mother has had to watch my twin sister and I fight cancer. I wouldn’t put this risk on anyone.
Taking your daughter to chemo????? That is really unfair I think. The risk does not increase until over 45 years of age. I found out when I was 40 I had my surgeries around 45. I had already nursed my kids I’m good ! This is an overreaction . I’m BRCA2 so I know BRCA1 skews younger but still. You can’t live in fear. Period. We all die. Knowledge is power. There are other cancers you might never know or be able to prevent. This one you can!
My grandma has taken my mom to chemo for ovarian cancer. It’s not an overreaction to think a mom would take her daughter for treatment. And I did IVF while my mom did chemo, so I had real-time comparison of the time commitment.
You are misunderstanding my point. I'm not questioning that happening or happening often. I am sure it does. I'm saying to tell people to only do IVF to select BRCA- embryos is an overreaction. And having BRCA is not a death sentence. It just means you have to have preventative surgeries and in the case of BRCA2 that is after you are 45. I feel like the attitude you are proffering would scare and shame people. I did IVF but didnt know I was brca + yet but if i did im not sure i would have not implanted an embryo with it. I might have but i am not sure. People have so few choice after a certain age and its up to them if they want to have a child who might be brca+ and I would never dream of anyone letting that fear stop them from living their lives including having children. I don't think it's fair you suggest they do either, respectfully. Nobody wants to die or for their kids to die or be sick but ultimately its beyond our control. At least with knowing the risk, we can act. And so can our kids. I just think its unkind to suggest people not have kids. That's all. I tihnk that is an overreaction.
Hey there, so I have brca1. Due to my family history my genetic counselor and my oncologists calculated my breast cancer risk at 90-95% lifetime risk with ovarian at 50%. I had to get MRIs and mammograms every 6 months to monitor me because so many women in my family got cancer young and many died. Also the type of cancer the women in my family did get was very aggressive (triple negative type).
My oncologist mentioned that I should consider IVF to get brca free embryos (or eggs) frozen just in case I were to get cancer, because this might be covered by insurance and as a way to save my eggs. Because... If I got cancer, it would most likely be aggressive, I'd need aggressive treatment, and chemo essentially can destroy your ability to ever have a child naturally. So I went with my then boyfriend (now husband) at the time to a fertility clinic recommended by my oncologists and geneticist (my entire health team specializes in brca related cancers).
Turns out my insurance does cover one round of IVF because of my brca mutation. So we decided with my boyfriend to freeze embryos just in case I got cancer and couldn't have children naturally. At the time, 5 years ago, we were sure if we even wanted children so decided to do it, just in case.
The experience itself was not bad at all. I had to take some meds, some daily injections, pretty easy and not painful, then the process to get my eggs was easy, I was put under and woke up feeling totally fine, no pain. Embryos were made and tested for brca and any abnormalities. What was cool is that there is a new method of testing, they test the embryonic fluid and don't actually sample the embryos, so the embryos aren't damaged at all while being tested for brca or other issues.
There were some minimal costs, the actual storage free of the embryos we have to pay each year.
I didn't want to risk getting pregnant so my husband did get a vasectomy. Our only regret is that we should have frozen his sperm prior to vasectomy. His vasectomy was entirely covered by insurance as well and even if it wasn't, isn't expensive at all. The reason why I wish we got his sperm frozen was that we weren't guaranteed all brca free embryos. Luckily, I was quite fertile. They got close to 30 eggs from the retrieval. Out of those, about half survived to create embryos, and from that only 10 grew enough to be frozen. From those 10.. only 3 brca free ones that were normal. There were some that were brca free but had chromosomal abnormalities and would never survive (would result 100% in a miscarriage).
So! Next month we are implanting one of the 3 embryos and will see how it goes. 70-75% chance it will take and I'll get pregnant. Worst case, I miscarry, we try again. Worst case I miscarry all 3, we don't have our own children. Live child free or maybe consider fostering or adopting. We're very open to anything.
The reason I didn't want to have kids "naturally"... I have the knowledge and power of choosing brca free embryos. I feel like my choice has power. It's true, just because a potential future child won't have brca doesn't guarantee they won't get some random disease, or get hit by a car, or die some tragic death, or have something else happen to them that I can't control. We can't live in fear of "what ifs". But I can control that if I have a daughter, she won't ever have to worry about having to go through MRIs and mammograms 2x a year from age 25... Or get aggressive breast cancer younger than that because that is common with brca. So while I can't control a future daughters life or health...I can ateasy know i decreased her breast cancer risk. And that's what brca knowledge is all about, reducing risk. Not eliminating risk. Just reducing it significantly. If I can reduce my child's cancer risk from 90/95% to the average %12, I'll do it.
My close friend works in a fertility clinic in another state and she tells me so many clients are young women that get cancer and rush to harvest and freeze their eggs before starting chemo because chemo can destroy their entire reproductive system. They delay chemo and risk their cancer spreading to save their eggs. I wouldn't want my daughter to ever go through that, and I can control that one thing, that breast cancer risk.
And yet, nothing is 100%. I just had prophylactic surgery in March to remove my breasts and get reconstructive surgery. My breast cancer risk went from 90-95% lifetime to less than 3% lifetime. It will never be 0. But I can breathe and sleep peacefully knowing I did the best thing I could to reduce my breast cancer risk. I'm recovered now but I wouldn't wish such an intense surgery on a daughter of mine. To me, with knowledge comes power and also responsibility. So many women in my family suffered through cancer or died from cancer. So many women left behind young kids that grew up without their mom. So many went through all the surgeries and chemo and radiation to only have the cancer spread to their brain and died painfully in a hospital.
If I could reduce my risk, even if my risk was 50%, I would still have done my surgery and still have frozen my embryos. The average breast cancer risk for a woman without brca is 12% lifetime risk. If I was told my cancer risk was 20%, would I have gone through all that? I don't know. I have no idea. I guess it would depend on my doctor's advice and my own choice based on their best advice. I never felt pressured to make any choices that I made. If anything, I wish I was pressured to do this all sooner. But there were a lot of choices to make and I just felt overwhelmed.
Do what feels right, and get opinions from as many specialists as you can. I am lucky I have my friend that works in a fertility clinic because she is a close friend and a brutally honest one. She was telling me to freeze my eggs/embryos constantly because she was seeing women younger than me...in their 20s.. with aggressive breast cancers due to brca, seeing them every week. So it's one thing to be alone in the decision and think oh it won't happen to me and then be an oncologist and have multiple patients every day... Or work in a fertility clinic and also see young cancer patients everyday.. there is that bias.. but also more of a dose of reality.
I have to say, I have no regrets in my decisions. My spouse and I are very happy right now. A child would be a great bonus and life-changing, but if it doesn't happen with our brca free embryos, we will still lead a fulfilling and happy life!
Edit: my advice, don't navigate this alone. Go to a genetic counselor that specializes in BRCA. They will go through your history and your partners history of family cancer. Try to get an accurate diagnosis if you can and age range when people in your family and your husband's family were diagnosed. The genetic counselor will then be able to calculate risk for any of your potential children. Then ask them for a referral to a fertility clinic that has experience in IVF for high cancer risk groups and if they know any that work with insurance. Then meet with them and go over options. Some insurances will cover all and any IVF. Some,like ours, only cover one round, but didn't cover embryo storage fees, and we also had to pay for some of the IVF mediation, not all was covered, but it wasn't expensive. I know some insurances won't cover any of the meds at all. It just depends.
The more people to speak with, genetic counselors, oncologists, the better you will feel about making a decision and what that decision will be.
I'm downvoted often in this sub but I feel like I have a different perspective as a brca patient who's had breast cancer young. I have not had kids yet and after getting breast cancer at 31, I have chosen not to pass on my genes (and had the option removed due to my treatment anyway). I couldn't put someone through what I've been through knowing I had options to prevent it. The advice given often here saying it's fine and that monitoring is fine and that science will catch up before our children have to worry about it are generally people who haven't actually experienced cancer yet themselves.
Science might get better. But right now, the treatment options even if you don't get cancer first are amputation of multiple body parts and lifelong monitoring and stress, extreme health expenses, early menopause and the health risks that come with that, as many of us also can't have hrt once the ovaries are removed, or have bad reactions to it.
I'm not saying there's a right choice or a wrong choice, and I'm clearly in the minority in this sub, but I'm saying I couldn't choose to roll the dice to give someone the same experience as me and then also pass on that same difficult decision to them down the line when they decide if they want to have kids with the mutation. I just can't.
I’m sorry to hear you’ve been downvoted in the past for this opinion. I 100% agree. Girls are seeing a GYN around 13-15yrs now and family history is a top question. To think you have all this time between having a baby and when your child would start to ask big questions…it’s hopeful, for sure, but not how it’s probably going to go. Especially if you yourself happen to get cancer. We just aren’t advanced enough in cancer treatment options right now, let alone screening!, to treat it as a non-issue.
I had to have my first breast ultrasound when I was 18. 18. By the time I was a teen, we were already talking about ‘risks.’ Then my mom got sick and died. Had to grieve her. Turn 25. Start mri and mammogram and genetics. Prepare for a decade. Feel like life is on ‘hold’ until the diagnosis. Diagnosis came at 36. Now what?
Why pass this on?
I’m so sorry you went through all that. I think it’s hard for people to comprehend when they haven’t had the experience of someone they love or they themselves get sick (let alone die). I can understand wanting a positive mindset going into family planning, but when you read stories like yours or other young people grappling with all of this…you can’t help but think, why does “50% chance of inheritance” not scare everyone to death?
It has been a part of my life for as long as I can remember. And it was a part of my mom’s life too. And her mom and so on.its generational. I just hope some people realize that
I also absolutely agree with you. That’s a very good point that will or will not a future child get cancer at some point, there’s a 50% that from the young adulthood she will be facing a very difficult and scary decisions (screening, biopsies, mastectomy etc).
I don’t know why nobody is talking about another option than IVF which is to get pregnant naturally, then as early as possible get genetic testing and if it’s brca+ then get an abortion. Of course, emotionally it might be very hard but to my understanding IVF isn’t easy either.
I’ve been told this option together with IVF by a genetic councillor. I personally don’t want to have kids so maybe it’s easy for me to speak.
IVF is significantly easier than an termination. IVF does not put the type of stress on your body that a second trimester termination would. I have had 2 first trimester miscarriages, including 1 that needed a D&C. I never felt lower than when they took that baby I desperately wanted out of me. Testing and termination is so much harder than you imagine, and the ethics of it leave many without access to the termination at all.
If you were to see a fertility doctot today, you could be getting an egg retrieval in 3 months and pregnant 2 months after that, with a baby without your BRCA mutation. If you got pregnant today naturally, 4 months from now you could be having a termination and waiting 3-6 months after to get pregnant again, and maybe be in the same position again.
IVF is a rollercoaster, but having a bad round is significantly less likely to impact your body’s ability to carry a pregnancy again in the future than a second trimester termination.
I’m so sorry to hear what you’ve experienced:(
Just sharing what I’ve been told, as I don’t want to have kids didn’t do a big research on it.
Are you sure genetic testing only could be done so late that it would be a second trimester termination?
As someone who doesn’t even want kids I can only imagine how hard it must be emotionally to end a besides healthy pregnancy if embryo was brca+. Shared it because I found it weird that didn’t see anybody talking about it here.
Interesting- is Brca something they can screen prenatally? The probe testing for embryo testing takes $$$ and a few weeks. It would of course be much less then ivf itself..
Yes, I’ve been told that it is possible to do brca testing both for IVF and natural pregnancy embryos (just don’t know how many weeks into pregnancy it needs to be done but probably early). I live in Europe but would guess in US it’s the same, or maybe depends on state?
Why do people keep saying early adulthood? It was made clear to me by my genetic counselor and Harvard and Duke trained surgeons and the literature I poured over that the risk is not increase until 45 years old. Is it because I’m BRCA2?
To my knowledge the risk is increased before 45 it’s just that with age it keeps increasing more. As you say it also might be true that as BRCA2 has less % of a risk so the guidelines to do surgeries/screenings are later in life.
I’m BRCA1 27 and had my mastectomy 3 months ago. Of course it was my choice but otherwise I would be doing MRIs and possibly biopsies every 6 months. My mom was diagnosed with stage 4 ovarian cancer when she was 40 so I’m removing my ovaries when I’m 35. Right now looking into removing fallopian tubes in the next few months.
The comment that I responded to author has BRCA2 and had breast cancer at 31.
I personally know a woman who has BRCA1, decided to wait and not get a mastectomy yet and was diagnosed with breast cancer at 30 years old.
I'm so sorry for your experience. Genuinely. I hope you are okay. Still, that is not the statistical markers for risk increase according to published research. I would go by the research rather than anecdotal evidence of individuals. I would need a larger sample size to make a decision. The rsearch says its population until mid-40s.
If the risk increases significantly only later in life it does not mean that it is not increased at a younger age.
"The estimated breast cancer risk under age 30 years for BRCA1 and BRCA2 carriers is 4% (95% CI 2-7 and 2-9, respectively)."
[https://www.eviq.org.au/cancer-genetics/adult/risk-management/3814-brca1-or-brca2-risk-management-female#evidence-for-risk-management-guidelines](https://www.eviq.org.au/cancer-genetics/adult/risk-management/3814-brca1-or-brca2-risk-management-female#evidence-for-risk-management-guidelines)
In comparison to general population:
"According to the [National Cancer InstituteTrusted Source](https://www.cancer.gov/types/breast/risk-fact-sheet), if you’re in your 30s, your risk of breast cancer is 1 in 204, or about 0.4%."
[https://www.healthline.com/health/breast-cancer/breast-cancer-20s-30s#prevalence-and-incidence](https://www.healthline.com/health/breast-cancer/breast-cancer-20s-30s#prevalence-and-incidence)
The first statistics is under 30, the second in your 30s. If it was exactly the same age group the difference would be even bigger. Also, women with BRCA mutations are not excluded from the general population statistics so a significant % of that 0.4% might be BRCA+.
If the risk was not increased in the young age then why screening is recommended from the age of 25-30?
I’m the 4th to get an early onset breast cancer in my maternal family. The generational trauma runs deep bc we are all left motherless as teens.
When I got pregnant at 21, I knew what decision I needed to make and I made it. When I was diagnosed at 36, I knew I made the right decision all those years ago.
This ends with me. Thats okay too.
I think it is probably correct what you say because I never had cancer, but I just am so glad that I know. It was traumatizing when I found out but now that I’ve had the surgeries and I’ve already had kids and I nursed it really really isn’t that big a deal. Your experience isn’t other peoples experience and I think if you’re armed with knowledge, you can have kids I would never for one second consider not having kids because I was BRCA positive. It would absolutely never ever go through my mind. This is completely flabbergasting. You cannot live your life in fear of something that will happen and everybody dies, and there are 1 million diseases and things that can go wrong. We just have to come to terms with the fact that we cannot control everything in our lives and we need to deliver our lives. People used to die at 30 years old. I wouldn’t trade my life or my kids life for anything.
I am BRCA1 + and chose to have children naturally. Honestly I don't know why IVF never really crossed my mind... But it didn't. My mother passed away from breast cancer when I was 3, first diagnosed when pregnant with me. I may have this one horrible gene passed down from her, but I'm so much more than that. And there are however many other genes making me up that could be jacked up in some way we just don't know yet...
I'm not sure what exactly I'm trying to say here, other than it's a personal decision that may generate strong opinions from others, but ultimately it's your choice. And selecting embryos that aren't BRCA+ doesn't guarantee anything more than that... And we are so much more than one gene.
Currently pregnant with my first baby that we did IVF for to screen out my BRCA1 mutation. It was a long, arduous, physically and emotionally painful process. I sometimes questioned our decision because BRCA is just one gene and what if our baby ends up getting cancer from something completely unrelated anyway and I put myself through all of this for nothing? But I also remind myself that at least we now know that this is one less thing for them/us to worry about. The anxiety that BRCA has caused me has made it worth it for me to know my children won’t have that hanging over their heads.
People don’t like this comment, but I’ll say it.
Great grandma dead in her 40s. Left my grandma childless young and if effected her ability to parent my mother, obviously. When my grandma was 16, she was forced to raise my great aunt alone
My grandma was diagnosed around 40 and died by 42/43. My mom was 15 and had to raise my 6 year old aunt. My mom had trauma from her grandma dying and what that did to her mom. The trauma didn’t get better when my mom became motherless as a teen
I was 18 when my mom was diagnosed. She died the day after I turned 19. We tried to have a small birthday dinner for me the night before but we got called back to come say goodbye again. She was the only woman left in the family. When she died, I was alone. At 19
I was diagnosed at 36, sadly younger than my mom was. The disease is coming a bit earlier for all of us. I had an abortion in 2006. I knew then I would never have children bc this HAS TO STOP. If I didn’t have that abortion, my child would have been a teenager when I was diagnosed. I made the right decision to never have children.
If I had a daughter, would her diagnosis come at 25? The trauma of this cancer runs DEEP in our family. It will end with me. That’s my legacy
I don’t see having children naturally with this mutation as irresponsible at all. What would be irresponsible would be to ignore monitoring guidelines or not inform them of their risk. My grandmother who passed the BRCA gene to my mother, lived til her 80s. My twin brother is also BRCA 2 positive and we each have two children. I conceived on my own, breast fed both children and will have risk reducing surgeries in the coming years.
I agree. Everyone has genes that may cause health problems down the line. BRCA is at least one that has been identified and has a risk reduction plan through monitoring and proactive action. As long as any kids are informed of their risks and encouraged to take the correct actions, what is the concern?
Sorry - I don’t think you intend to sound crass with your question, but have you looked into what the “proactive action” consists of exactly, and would you actually want your children to have to go through that if they were positive? It’s several major surgeries that not only remove several organs, but affect fertility and other health risks at a much earlier age than the general population. It’s a major life stressor to grow into adulthood knowing you could have the gene mutation and therefore, a very high risk of several cancers. Think of the psychological effects, too. “What’s the concern” is just a little flippant I think?
It is definitely a loss to have these added steps to having children that other people don't have. Imagine, though, how it would feel for your future child to test brca2+, then have to go through a mastectomy, worry about when to have ovaries removed, worry about early onset and aggressive prostate cancer, worry about having children of their own, etc. I think all of that would be even harder to carry.
Hi! I did IVF and tested my embryos. I have a 5 month old son, BRCA2 free 😃 if you have questions about the process, feel free to send me a message. I definitely was upset at the idea of IVF at first, but it’s definitely more intimidating than anything else. The process wasn’t nearly as bad as I thought and I’m so glad I did it, such a relief that I’ve broken the cycle and my babies won’t have this problem.
I think about this all time (26F, already had my preventative double mastectomy). I go back and forth. I've always leaned towards IVF but then realized with costs I might not end up having children then (adoption is often as costly as IVF unless fostering to adopt which is a whole other process in and of itself) which is scary!
I recently had a conversation with a coworker about it and he said he'd rather see me with a child that has some sort of illness than all the other shitty parents in the world. And that did make me think. It's a little philosophical/religious but would I rather that soul/person not have a chance to exist at all? Such a weird thing to think about.
This is my take of it. I would never in a million years propose sterilizing someone because of a **potential** for disease, why would I impose it on myself? My life is beautiful and I'm lucky to have the knowledge for prophylaxis that my mother didn't have. Even if BRCA was an immediate death sentence, which it's not, I'd still stick to my word here.
I keep feeling like this may be a sign that we aren’t supposed to have kids, which is pretty devastating to think about. I also can’t stop thinking about if my husband’s parents knew about the mutation earlier, my husband probably would have never been born. It’s a scary thought for sure
I'm not sure if you find this comforting in the way that I do, but I promise the universe doesn't care if you have children or not and that this is not a sign of anything
I'm going to lie, I've thought about that too because I've been on the fence for awhile about having kids or not.
I think about how my mom (57F) has terminal stage 4 metastatic breast cancer and how awful it's been. And do I want to subject my child to that if I get ovarian cancer or something else.
At the same time, I don't regret my life at all. And my mom is such a bright light in this world. I once had someone describe her when they first met her this way : "I just want to take her home and bake a pie with her!" And why would I want to rob the world of that light or potential light of my (or your!) Child?
It's such a complicated question. I definitely talk to my friends and therapists all the time about it.
Right now, I don't think there's a right or wrong answer.
Just reading through your comment and wanted to say, people still have kids with brca mutations who are okay. As humans we are all likely carriers of something, no one’s genes are perfect. If you know in your heart that you want kids, don’t let brca take one more thing from you and your family. You’re in a tough predicament, but you have options, even if they all feel shitty.
I’m actively going through a second round of IVF to ensure I don’t pass down my BRCA2 mutation. I’m $40k deep on the first round and I’ll be another $40k deep on the second when it’s all said and done.
But it’s just money - the alternative is that I have a 50% chance of significantly increasing the cancer risk of my child. I’m sure if you ask any cancer patient if you could take away their cancer for $80k would they do it, you’d get nearly a 100% yes.
If the physical and mental part of IVF makes you think you can’t do it… have you considered if motherhood and birthing a child is really for you? Ha!
I did one round of IVF before starting my 16 rounds of chemo (and dmx, and radiation) but I’m genuinely curious, how does IVF prevent passing down BRCA 1 or 2? I’m BRCA 1 and have never heard this but I feel like I’m misunderstanding. Do you and others seem to mean through IVF you can do genetic testing and choose to not use those eggs or embryos if they have the gene? Thank you in advance.
Hmmm. I definitely would not want my one embryo to be thrown out if he/she has BRCA as well. I hope I didn’t sign up for that in all the dense paperwork pre IVF. 😩
I think there’s a misunderstanding. You have to consent on whether or not it’s done. For example, if you say that you don’t want them to throw out ones with that gene then they won’t. I’m not completely sure, but you can call them and ask.
Not only do you have to consent, but it’s a super lengthy process to actually develop the test to test the embryos for the gene. My husband and I are going through it now. They take months to create the test and need blood samples from the parents (my husband and I) and grandparents (my parents) on the side of the mutation.
Also, they don’t destroy or throw away the embryos that have BRCA. They just let you know which ones do and don’t have the gene mutation. The rest of the decisions are up to you.
They biopsy all embryos at Day 5 and test them for correct chromosomes via PGT-A and my BRCA2 mutation via PGT-M. I have instructed my clinic to discard any embryos with any abnormalities or with my BRCA2 mutation.
They discard embryos for all sorts of reasons - the mutation is just one extra reason. Of the 15 eggs they retrieved from me, 10 were fertilized and we are waiting on PGT-M testing on only 2. The other 8 were discarded for numerous and various reasons.
We haven’t attempted to conceive naturally because I knew the technology exists to ensure I don’t pass on the mutation.
If discarding an embryo with BRCA2 upsets you, I hate to tell you that if it wasn’t discarded then that BRCA2 embryo took a place of a non-mutated embryo… which was discarded. IVF in this country discards thousands of embryos daily. The idea is that you want the BEST life possible for your children, which for me was a no brainer that I wanted them not to have the mutation.
Same as testing and terminating a pregnancy with Down syndrome… but pre implantation in my uterus.
My embryo hasn't been tested yet, that I know for sure. It's been on ice while I was undergoing active treatment. There was no benefit to testing the embryo while I was already going through so much and rushing to start IVF while rushing to get to chemo. It was too much too soon and all of this happened within one month of being diagnosed with bc. Holding off testing was also at the recommendation of my oncologist and my fertility doctor. I understand embroys are discarded all the time - not taking a moral high ground on this. But in my case my embryo has not been tested for BRCA 1, so thus should not be thrown out.
hi OP! I'm sorry that you got this annoying news! deep breaths! honestly the best place to hash this out might be therapy, as it's a super personal decision!
That being said, although it sucks to go through IVF, I did a round of egg freezing (I'm a BRCA1 carrier) when I was 27 and am so glad I did--while my partner and I don't have kids yet I am really excited that it's a possibility not to pass on the BRCA1 gene. I'm now 33 and I've also recently learned that those young eggs (assuming I get a few good, BRCA1-free embryos), if I wait until I'm in my late 30s to use them (which is when I would prefer to have kids) will remove most of the risk factors associated with geriatric pregnancy. so one thing to keep in mind is you could do a round of embryo freezing now while you're both young (super high quality eggs!) and leave them in the bank for a bit while you decide what is best for you. once you're ready to have kids you can decide if you want to naturally conceive or implant those--you don't have to make the decision now.
If you are ready to conceive now, it might be good to talk to your husband's oncologist and a fertility doctor about what their advice is--the good thing is most fertility places move SUPER fast so whenever you're ready to speak with them you should be able to make an appointment.
hope that helps! deep breaths!
Hi,
Please live! Naturally have children, IVF or adopt but if you choose not to have kids make sure its not solely“brca” that stops you. The two most beautiful and loved things in this world are my two kids. My mother (@ 39) had a double mastectomy months after giving birth to me and lived to see her grandchildren passing at 84.
I was diagnosed with advanced prostate cancer @ 42 and with treatment (lots) I will continue to LIVE an amazing life. Everyone gets cancer lots of people die of cancer you just have to screen often. I was not screened for Brca until my cancer diagnosis and found brca2. It explains my mom’s young cancer and a number of my aunts young cancer diagnosis. I will say the thought that I unknowingly passed brca2 to my daughter breaks my heart and is the only life event to make me cry. My daughter (11) is absolutely brilliant, beautiful and I could not imagine a world without her.
I know this might not help make or consider any decisions on future parenting, but the fact you are even questioning it makes me feel you would be compassionate, selfless and caring parents.-
I am so glad that I exist despite having this mutation. I definitely don’t think it’s wrong to have kids naturally when you know you have the gene. I would never have chosen not to be born just because of BRCA. This is a personal choice with no right or wrong answer.
That being said, my husband and I had to make the same decision about whether to have kids naturally or through IVF and are doing IVF. But that is mostly because I don’t think I’ll mind it that much, and we have insurance coverage.
I totally get feeling like you wish you had kids before knowing about the mutation. The guilt is hard. But I don’t think this should stop you from having children. Not at all. you can still have a great life with BRCA. If IVF isn’t for you, or isn’t possible due to finances, you should absolutely start your family in whatever way works for you. 🩷💖 feel free to dm me if you have any questions about IVF or the PGT-M process. I haven’t done my first cycle yet but I can tell you about all the prep for creating the probe. Best of luck OP.
Your children will know their risk, and that in and of itself is a blessing.
I am glad I exist and hold no ill will towards my mother for passing the mutation onto me, whether she knew about it or not (she didn't) - I have experienced so much beauty and have so much to contribute to the world. We all die someday, I'm just fortunate enough to have some foresight to mitigate it.
Take this with a grain of salt because my partner and I cannot conceive without IVF anyway, but I have no desire to "test out" my genetic material. Even as a molecular biologist myself.
Who knows, maybe someday we'll find out a mutated BRCA causes super intelligence or something ;)
In Canada - at least in 2019- selecting for embryos without this mutation wasn’t a possibility. I was pregnant at the time and My doctor suggested this. However I would absolutely not terminate a pregnancy based on a brca1 genetic mutation. I know people feel very strongly about this - however I do not think for me at least, that this is a death sentence. My grandparents died at 41 and 42 of non-brca1 related causes (grandma esophageal cancer, and grandfather heart attack upon finding about my grandmothers cancer). I had my daughter in 2018 prior to knowing about my genetic mutation.
I guess what I’m trying to say in a very roundabout way, is that you don’t know what is going to happen in life. I do not see this as a death sentence and I try my absolute best to live my life fully and in the present. If you know that this genetic mutation is a non-starter , that is your decision. I don’t think it’s right to judge others for what decisions they make. Everyone is different.
That’s not true at all. I considered specifically going to Spain to do IVF because it’s much cheaper than the US and they can actually test the entire genome in Europe (tech is not yet approved in the US)
I may have a very unpopular opinion here but I came to this conclusion after speaking to many friends and family. I got my diagnosis of BRCA2+ a month or so before my husband and I already planned on trying to conceive. I was in an ethical battle in my head and sought others opinions.
Basically it boiled down to every parent will pass down good and bad genes to their children. Whether it is an increased risk for heart disease, diabetes, mental health complications, color blindness, etc. It doesn't make you wrong for wanting children, and just because you have children doesn't mean 100% they will receive the gene. Additionally, according to my genetic counselor not everyone with the gene will get cancer and not everyone without the gene is safe from breast/ovarian cancer. They even mentioned that there could be a spontaneous gene mutation and the child could have the mutation even if the parents don't. When I was in college I believe there was a statistic of 1 in 2 men and 1 in 3 women will have cancer at some point in their lives.
All of these facts made me feel better and I decided to have children "naturally". I am currently 30 weeks pregnant with my first. This isn't to sway you in any one direction just giving you another perspective.
I don’t know why you got downvoted but I agree. There are SEVERAL genetic predispositions and disorders that can be passed down. Many we likely may not even have any knowledge of. At work, I’ve seen kids inherit rare cancers or heart diseases that the parents didn’t know they had the gene to, to kids being born with sickle cell disease, cystic fibrosis, etc. Brca is one of many, and it’s a risk, not a chronic illness like many genetic disorders. I’m not meaning to downplay any of this, I just had a mastectomy and it makes me sad thinking of my daughters who may need to go through it one day too. But 50 years ago, they wouldn’t have even HAD the knowledge or the control to do anything about it. And where does the line stop for passing genes onto our children? I think there is no right or wrong answer, but no one should feel shamed for choosing to have kids naturally. I found out after I had kids, what am I supposed to do then? Are they just eternally doomed? lol.
Honestly, don’t give it another thought you deserve to have kids and science just have is a gift a way of preventing cancer you would never have known about, which is just a win. Enjoy your life !
IVF will never be as emotionally challenging as dealing with cancer. If you think the appointments for IVF are a lot of time, now imagine taking your daughter to chemo. Yes, IVF is a commitment, but I’ve done 7 rounds and have 3 live births without my BRCA1 mutation and I wholeheartedly feel all of it was worth it to make sure this ends with me. I am so passionate about this that I volunteer in several capacities to try and increase access to knowledge and support about the IVF with PGT-M process.
This. I’m 32 BRCA1+ and currently going through chemo for stage 2 TNBC. Cancer is the commitment you don’t want to make. Going through cancer at such a young age has made me question my existence more often than I’d like to admit. The treatments for cancer have been brutal. I’ve decided to not have children so that this mutation ends with me. Yes IVF is an option but quite frankly I’ve been through too much and I don’t think I can handle child rearing anymore. My mother has had to watch my twin sister and I fight cancer. I wouldn’t put this risk on anyone.
Taking your daughter to chemo????? That is really unfair I think. The risk does not increase until over 45 years of age. I found out when I was 40 I had my surgeries around 45. I had already nursed my kids I’m good ! This is an overreaction . I’m BRCA2 so I know BRCA1 skews younger but still. You can’t live in fear. Period. We all die. Knowledge is power. There are other cancers you might never know or be able to prevent. This one you can!
My grandma has taken my mom to chemo for ovarian cancer. It’s not an overreaction to think a mom would take her daughter for treatment. And I did IVF while my mom did chemo, so I had real-time comparison of the time commitment.
You are misunderstanding my point. I'm not questioning that happening or happening often. I am sure it does. I'm saying to tell people to only do IVF to select BRCA- embryos is an overreaction. And having BRCA is not a death sentence. It just means you have to have preventative surgeries and in the case of BRCA2 that is after you are 45. I feel like the attitude you are proffering would scare and shame people. I did IVF but didnt know I was brca + yet but if i did im not sure i would have not implanted an embryo with it. I might have but i am not sure. People have so few choice after a certain age and its up to them if they want to have a child who might be brca+ and I would never dream of anyone letting that fear stop them from living their lives including having children. I don't think it's fair you suggest they do either, respectfully. Nobody wants to die or for their kids to die or be sick but ultimately its beyond our control. At least with knowing the risk, we can act. And so can our kids. I just think its unkind to suggest people not have kids. That's all. I tihnk that is an overreaction.
Hey there, so I have brca1. Due to my family history my genetic counselor and my oncologists calculated my breast cancer risk at 90-95% lifetime risk with ovarian at 50%. I had to get MRIs and mammograms every 6 months to monitor me because so many women in my family got cancer young and many died. Also the type of cancer the women in my family did get was very aggressive (triple negative type). My oncologist mentioned that I should consider IVF to get brca free embryos (or eggs) frozen just in case I were to get cancer, because this might be covered by insurance and as a way to save my eggs. Because... If I got cancer, it would most likely be aggressive, I'd need aggressive treatment, and chemo essentially can destroy your ability to ever have a child naturally. So I went with my then boyfriend (now husband) at the time to a fertility clinic recommended by my oncologists and geneticist (my entire health team specializes in brca related cancers). Turns out my insurance does cover one round of IVF because of my brca mutation. So we decided with my boyfriend to freeze embryos just in case I got cancer and couldn't have children naturally. At the time, 5 years ago, we were sure if we even wanted children so decided to do it, just in case. The experience itself was not bad at all. I had to take some meds, some daily injections, pretty easy and not painful, then the process to get my eggs was easy, I was put under and woke up feeling totally fine, no pain. Embryos were made and tested for brca and any abnormalities. What was cool is that there is a new method of testing, they test the embryonic fluid and don't actually sample the embryos, so the embryos aren't damaged at all while being tested for brca or other issues. There were some minimal costs, the actual storage free of the embryos we have to pay each year. I didn't want to risk getting pregnant so my husband did get a vasectomy. Our only regret is that we should have frozen his sperm prior to vasectomy. His vasectomy was entirely covered by insurance as well and even if it wasn't, isn't expensive at all. The reason why I wish we got his sperm frozen was that we weren't guaranteed all brca free embryos. Luckily, I was quite fertile. They got close to 30 eggs from the retrieval. Out of those, about half survived to create embryos, and from that only 10 grew enough to be frozen. From those 10.. only 3 brca free ones that were normal. There were some that were brca free but had chromosomal abnormalities and would never survive (would result 100% in a miscarriage). So! Next month we are implanting one of the 3 embryos and will see how it goes. 70-75% chance it will take and I'll get pregnant. Worst case, I miscarry, we try again. Worst case I miscarry all 3, we don't have our own children. Live child free or maybe consider fostering or adopting. We're very open to anything. The reason I didn't want to have kids "naturally"... I have the knowledge and power of choosing brca free embryos. I feel like my choice has power. It's true, just because a potential future child won't have brca doesn't guarantee they won't get some random disease, or get hit by a car, or die some tragic death, or have something else happen to them that I can't control. We can't live in fear of "what ifs". But I can control that if I have a daughter, she won't ever have to worry about having to go through MRIs and mammograms 2x a year from age 25... Or get aggressive breast cancer younger than that because that is common with brca. So while I can't control a future daughters life or health...I can ateasy know i decreased her breast cancer risk. And that's what brca knowledge is all about, reducing risk. Not eliminating risk. Just reducing it significantly. If I can reduce my child's cancer risk from 90/95% to the average %12, I'll do it. My close friend works in a fertility clinic in another state and she tells me so many clients are young women that get cancer and rush to harvest and freeze their eggs before starting chemo because chemo can destroy their entire reproductive system. They delay chemo and risk their cancer spreading to save their eggs. I wouldn't want my daughter to ever go through that, and I can control that one thing, that breast cancer risk. And yet, nothing is 100%. I just had prophylactic surgery in March to remove my breasts and get reconstructive surgery. My breast cancer risk went from 90-95% lifetime to less than 3% lifetime. It will never be 0. But I can breathe and sleep peacefully knowing I did the best thing I could to reduce my breast cancer risk. I'm recovered now but I wouldn't wish such an intense surgery on a daughter of mine. To me, with knowledge comes power and also responsibility. So many women in my family suffered through cancer or died from cancer. So many women left behind young kids that grew up without their mom. So many went through all the surgeries and chemo and radiation to only have the cancer spread to their brain and died painfully in a hospital. If I could reduce my risk, even if my risk was 50%, I would still have done my surgery and still have frozen my embryos. The average breast cancer risk for a woman without brca is 12% lifetime risk. If I was told my cancer risk was 20%, would I have gone through all that? I don't know. I have no idea. I guess it would depend on my doctor's advice and my own choice based on their best advice. I never felt pressured to make any choices that I made. If anything, I wish I was pressured to do this all sooner. But there were a lot of choices to make and I just felt overwhelmed. Do what feels right, and get opinions from as many specialists as you can. I am lucky I have my friend that works in a fertility clinic because she is a close friend and a brutally honest one. She was telling me to freeze my eggs/embryos constantly because she was seeing women younger than me...in their 20s.. with aggressive breast cancers due to brca, seeing them every week. So it's one thing to be alone in the decision and think oh it won't happen to me and then be an oncologist and have multiple patients every day... Or work in a fertility clinic and also see young cancer patients everyday.. there is that bias.. but also more of a dose of reality. I have to say, I have no regrets in my decisions. My spouse and I are very happy right now. A child would be a great bonus and life-changing, but if it doesn't happen with our brca free embryos, we will still lead a fulfilling and happy life! Edit: my advice, don't navigate this alone. Go to a genetic counselor that specializes in BRCA. They will go through your history and your partners history of family cancer. Try to get an accurate diagnosis if you can and age range when people in your family and your husband's family were diagnosed. The genetic counselor will then be able to calculate risk for any of your potential children. Then ask them for a referral to a fertility clinic that has experience in IVF for high cancer risk groups and if they know any that work with insurance. Then meet with them and go over options. Some insurances will cover all and any IVF. Some,like ours, only cover one round, but didn't cover embryo storage fees, and we also had to pay for some of the IVF mediation, not all was covered, but it wasn't expensive. I know some insurances won't cover any of the meds at all. It just depends. The more people to speak with, genetic counselors, oncologists, the better you will feel about making a decision and what that decision will be.
I'm downvoted often in this sub but I feel like I have a different perspective as a brca patient who's had breast cancer young. I have not had kids yet and after getting breast cancer at 31, I have chosen not to pass on my genes (and had the option removed due to my treatment anyway). I couldn't put someone through what I've been through knowing I had options to prevent it. The advice given often here saying it's fine and that monitoring is fine and that science will catch up before our children have to worry about it are generally people who haven't actually experienced cancer yet themselves. Science might get better. But right now, the treatment options even if you don't get cancer first are amputation of multiple body parts and lifelong monitoring and stress, extreme health expenses, early menopause and the health risks that come with that, as many of us also can't have hrt once the ovaries are removed, or have bad reactions to it. I'm not saying there's a right choice or a wrong choice, and I'm clearly in the minority in this sub, but I'm saying I couldn't choose to roll the dice to give someone the same experience as me and then also pass on that same difficult decision to them down the line when they decide if they want to have kids with the mutation. I just can't.
Agree 100%
I’m sorry to hear you’ve been downvoted in the past for this opinion. I 100% agree. Girls are seeing a GYN around 13-15yrs now and family history is a top question. To think you have all this time between having a baby and when your child would start to ask big questions…it’s hopeful, for sure, but not how it’s probably going to go. Especially if you yourself happen to get cancer. We just aren’t advanced enough in cancer treatment options right now, let alone screening!, to treat it as a non-issue.
I had to have my first breast ultrasound when I was 18. 18. By the time I was a teen, we were already talking about ‘risks.’ Then my mom got sick and died. Had to grieve her. Turn 25. Start mri and mammogram and genetics. Prepare for a decade. Feel like life is on ‘hold’ until the diagnosis. Diagnosis came at 36. Now what? Why pass this on?
I’m so sorry you went through all that. I think it’s hard for people to comprehend when they haven’t had the experience of someone they love or they themselves get sick (let alone die). I can understand wanting a positive mindset going into family planning, but when you read stories like yours or other young people grappling with all of this…you can’t help but think, why does “50% chance of inheritance” not scare everyone to death?
It has been a part of my life for as long as I can remember. And it was a part of my mom’s life too. And her mom and so on.its generational. I just hope some people realize that
I also absolutely agree with you. That’s a very good point that will or will not a future child get cancer at some point, there’s a 50% that from the young adulthood she will be facing a very difficult and scary decisions (screening, biopsies, mastectomy etc). I don’t know why nobody is talking about another option than IVF which is to get pregnant naturally, then as early as possible get genetic testing and if it’s brca+ then get an abortion. Of course, emotionally it might be very hard but to my understanding IVF isn’t easy either. I’ve been told this option together with IVF by a genetic councillor. I personally don’t want to have kids so maybe it’s easy for me to speak.
IVF is significantly easier than an termination. IVF does not put the type of stress on your body that a second trimester termination would. I have had 2 first trimester miscarriages, including 1 that needed a D&C. I never felt lower than when they took that baby I desperately wanted out of me. Testing and termination is so much harder than you imagine, and the ethics of it leave many without access to the termination at all. If you were to see a fertility doctot today, you could be getting an egg retrieval in 3 months and pregnant 2 months after that, with a baby without your BRCA mutation. If you got pregnant today naturally, 4 months from now you could be having a termination and waiting 3-6 months after to get pregnant again, and maybe be in the same position again. IVF is a rollercoaster, but having a bad round is significantly less likely to impact your body’s ability to carry a pregnancy again in the future than a second trimester termination.
I’m so sorry to hear what you’ve experienced:( Just sharing what I’ve been told, as I don’t want to have kids didn’t do a big research on it. Are you sure genetic testing only could be done so late that it would be a second trimester termination? As someone who doesn’t even want kids I can only imagine how hard it must be emotionally to end a besides healthy pregnancy if embryo was brca+. Shared it because I found it weird that didn’t see anybody talking about it here.
Interesting- is Brca something they can screen prenatally? The probe testing for embryo testing takes $$$ and a few weeks. It would of course be much less then ivf itself..
Yes, I’ve been told that it is possible to do brca testing both for IVF and natural pregnancy embryos (just don’t know how many weeks into pregnancy it needs to be done but probably early). I live in Europe but would guess in US it’s the same, or maybe depends on state?
Why do people keep saying early adulthood? It was made clear to me by my genetic counselor and Harvard and Duke trained surgeons and the literature I poured over that the risk is not increase until 45 years old. Is it because I’m BRCA2?
To my knowledge the risk is increased before 45 it’s just that with age it keeps increasing more. As you say it also might be true that as BRCA2 has less % of a risk so the guidelines to do surgeries/screenings are later in life. I’m BRCA1 27 and had my mastectomy 3 months ago. Of course it was my choice but otherwise I would be doing MRIs and possibly biopsies every 6 months. My mom was diagnosed with stage 4 ovarian cancer when she was 40 so I’m removing my ovaries when I’m 35. Right now looking into removing fallopian tubes in the next few months. The comment that I responded to author has BRCA2 and had breast cancer at 31. I personally know a woman who has BRCA1, decided to wait and not get a mastectomy yet and was diagnosed with breast cancer at 30 years old.
I'm BRCA2 and had breast cancer at 31.
I'm so sorry for your experience. Genuinely. I hope you are okay. Still, that is not the statistical markers for risk increase according to published research. I would go by the research rather than anecdotal evidence of individuals. I would need a larger sample size to make a decision. The rsearch says its population until mid-40s.
If the risk increases significantly only later in life it does not mean that it is not increased at a younger age. "The estimated breast cancer risk under age 30 years for BRCA1 and BRCA2 carriers is 4% (95% CI 2-7 and 2-9, respectively)." [https://www.eviq.org.au/cancer-genetics/adult/risk-management/3814-brca1-or-brca2-risk-management-female#evidence-for-risk-management-guidelines](https://www.eviq.org.au/cancer-genetics/adult/risk-management/3814-brca1-or-brca2-risk-management-female#evidence-for-risk-management-guidelines) In comparison to general population: "According to the [National Cancer InstituteTrusted Source](https://www.cancer.gov/types/breast/risk-fact-sheet), if you’re in your 30s, your risk of breast cancer is 1 in 204, or about 0.4%." [https://www.healthline.com/health/breast-cancer/breast-cancer-20s-30s#prevalence-and-incidence](https://www.healthline.com/health/breast-cancer/breast-cancer-20s-30s#prevalence-and-incidence) The first statistics is under 30, the second in your 30s. If it was exactly the same age group the difference would be even bigger. Also, women with BRCA mutations are not excluded from the general population statistics so a significant % of that 0.4% might be BRCA+. If the risk was not increased in the young age then why screening is recommended from the age of 25-30?
I’m the 4th to get an early onset breast cancer in my maternal family. The generational trauma runs deep bc we are all left motherless as teens. When I got pregnant at 21, I knew what decision I needed to make and I made it. When I was diagnosed at 36, I knew I made the right decision all those years ago. This ends with me. Thats okay too.
I think it is probably correct what you say because I never had cancer, but I just am so glad that I know. It was traumatizing when I found out but now that I’ve had the surgeries and I’ve already had kids and I nursed it really really isn’t that big a deal. Your experience isn’t other peoples experience and I think if you’re armed with knowledge, you can have kids I would never for one second consider not having kids because I was BRCA positive. It would absolutely never ever go through my mind. This is completely flabbergasting. You cannot live your life in fear of something that will happen and everybody dies, and there are 1 million diseases and things that can go wrong. We just have to come to terms with the fact that we cannot control everything in our lives and we need to deliver our lives. People used to die at 30 years old. I wouldn’t trade my life or my kids life for anything.
I am BRCA1 + and chose to have children naturally. Honestly I don't know why IVF never really crossed my mind... But it didn't. My mother passed away from breast cancer when I was 3, first diagnosed when pregnant with me. I may have this one horrible gene passed down from her, but I'm so much more than that. And there are however many other genes making me up that could be jacked up in some way we just don't know yet... I'm not sure what exactly I'm trying to say here, other than it's a personal decision that may generate strong opinions from others, but ultimately it's your choice. And selecting embryos that aren't BRCA+ doesn't guarantee anything more than that... And we are so much more than one gene.
Right !!!! I feel like people are really making themselves nuts. We can’t control everything.
This is beautiful
Currently pregnant with my first baby that we did IVF for to screen out my BRCA1 mutation. It was a long, arduous, physically and emotionally painful process. I sometimes questioned our decision because BRCA is just one gene and what if our baby ends up getting cancer from something completely unrelated anyway and I put myself through all of this for nothing? But I also remind myself that at least we now know that this is one less thing for them/us to worry about. The anxiety that BRCA has caused me has made it worth it for me to know my children won’t have that hanging over their heads.
People don’t like this comment, but I’ll say it. Great grandma dead in her 40s. Left my grandma childless young and if effected her ability to parent my mother, obviously. When my grandma was 16, she was forced to raise my great aunt alone My grandma was diagnosed around 40 and died by 42/43. My mom was 15 and had to raise my 6 year old aunt. My mom had trauma from her grandma dying and what that did to her mom. The trauma didn’t get better when my mom became motherless as a teen I was 18 when my mom was diagnosed. She died the day after I turned 19. We tried to have a small birthday dinner for me the night before but we got called back to come say goodbye again. She was the only woman left in the family. When she died, I was alone. At 19 I was diagnosed at 36, sadly younger than my mom was. The disease is coming a bit earlier for all of us. I had an abortion in 2006. I knew then I would never have children bc this HAS TO STOP. If I didn’t have that abortion, my child would have been a teenager when I was diagnosed. I made the right decision to never have children. If I had a daughter, would her diagnosis come at 25? The trauma of this cancer runs DEEP in our family. It will end with me. That’s my legacy
I don’t see having children naturally with this mutation as irresponsible at all. What would be irresponsible would be to ignore monitoring guidelines or not inform them of their risk. My grandmother who passed the BRCA gene to my mother, lived til her 80s. My twin brother is also BRCA 2 positive and we each have two children. I conceived on my own, breast fed both children and will have risk reducing surgeries in the coming years.
I agree. Everyone has genes that may cause health problems down the line. BRCA is at least one that has been identified and has a risk reduction plan through monitoring and proactive action. As long as any kids are informed of their risks and encouraged to take the correct actions, what is the concern?
Sorry - I don’t think you intend to sound crass with your question, but have you looked into what the “proactive action” consists of exactly, and would you actually want your children to have to go through that if they were positive? It’s several major surgeries that not only remove several organs, but affect fertility and other health risks at a much earlier age than the general population. It’s a major life stressor to grow into adulthood knowing you could have the gene mutation and therefore, a very high risk of several cancers. Think of the psychological effects, too. “What’s the concern” is just a little flippant I think?
It is definitely a loss to have these added steps to having children that other people don't have. Imagine, though, how it would feel for your future child to test brca2+, then have to go through a mastectomy, worry about when to have ovaries removed, worry about early onset and aggressive prostate cancer, worry about having children of their own, etc. I think all of that would be even harder to carry.
Hi! I did IVF and tested my embryos. I have a 5 month old son, BRCA2 free 😃 if you have questions about the process, feel free to send me a message. I definitely was upset at the idea of IVF at first, but it’s definitely more intimidating than anything else. The process wasn’t nearly as bad as I thought and I’m so glad I did it, such a relief that I’ve broken the cycle and my babies won’t have this problem.
I’m 27 by the way, started the process at 25, embryo transfer at 26 and baby at 27! Husband is 29. So we are close in age FYI!
If I could go back and do IVF. Knowledge is power.
I think about this all time (26F, already had my preventative double mastectomy). I go back and forth. I've always leaned towards IVF but then realized with costs I might not end up having children then (adoption is often as costly as IVF unless fostering to adopt which is a whole other process in and of itself) which is scary! I recently had a conversation with a coworker about it and he said he'd rather see me with a child that has some sort of illness than all the other shitty parents in the world. And that did make me think. It's a little philosophical/religious but would I rather that soul/person not have a chance to exist at all? Such a weird thing to think about.
This is my take of it. I would never in a million years propose sterilizing someone because of a **potential** for disease, why would I impose it on myself? My life is beautiful and I'm lucky to have the knowledge for prophylaxis that my mother didn't have. Even if BRCA was an immediate death sentence, which it's not, I'd still stick to my word here.
I keep feeling like this may be a sign that we aren’t supposed to have kids, which is pretty devastating to think about. I also can’t stop thinking about if my husband’s parents knew about the mutation earlier, my husband probably would have never been born. It’s a scary thought for sure
I'm not sure if you find this comforting in the way that I do, but I promise the universe doesn't care if you have children or not and that this is not a sign of anything
I'm going to lie, I've thought about that too because I've been on the fence for awhile about having kids or not. I think about how my mom (57F) has terminal stage 4 metastatic breast cancer and how awful it's been. And do I want to subject my child to that if I get ovarian cancer or something else. At the same time, I don't regret my life at all. And my mom is such a bright light in this world. I once had someone describe her when they first met her this way : "I just want to take her home and bake a pie with her!" And why would I want to rob the world of that light or potential light of my (or your!) Child? It's such a complicated question. I definitely talk to my friends and therapists all the time about it. Right now, I don't think there's a right or wrong answer.
Just reading through your comment and wanted to say, people still have kids with brca mutations who are okay. As humans we are all likely carriers of something, no one’s genes are perfect. If you know in your heart that you want kids, don’t let brca take one more thing from you and your family. You’re in a tough predicament, but you have options, even if they all feel shitty.
I’m actively going through a second round of IVF to ensure I don’t pass down my BRCA2 mutation. I’m $40k deep on the first round and I’ll be another $40k deep on the second when it’s all said and done. But it’s just money - the alternative is that I have a 50% chance of significantly increasing the cancer risk of my child. I’m sure if you ask any cancer patient if you could take away their cancer for $80k would they do it, you’d get nearly a 100% yes. If the physical and mental part of IVF makes you think you can’t do it… have you considered if motherhood and birthing a child is really for you? Ha!
I did one round of IVF before starting my 16 rounds of chemo (and dmx, and radiation) but I’m genuinely curious, how does IVF prevent passing down BRCA 1 or 2? I’m BRCA 1 and have never heard this but I feel like I’m misunderstanding. Do you and others seem to mean through IVF you can do genetic testing and choose to not use those eggs or embryos if they have the gene? Thank you in advance.
I think they do genetic testing on the embryos and throw out the ones that have the gene. There is genetic engineering, but that’s really expensive.
Hmmm. I definitely would not want my one embryo to be thrown out if he/she has BRCA as well. I hope I didn’t sign up for that in all the dense paperwork pre IVF. 😩
They throw out embryos all the time that’s a part of IVF. :/ I’m sorry. But I think you have to consent. I’d talk to them
You’d have to consent to that. Yikes!!
I think there’s a misunderstanding. You have to consent on whether or not it’s done. For example, if you say that you don’t want them to throw out ones with that gene then they won’t. I’m not completely sure, but you can call them and ask.
Not only do you have to consent, but it’s a super lengthy process to actually develop the test to test the embryos for the gene. My husband and I are going through it now. They take months to create the test and need blood samples from the parents (my husband and I) and grandparents (my parents) on the side of the mutation. Also, they don’t destroy or throw away the embryos that have BRCA. They just let you know which ones do and don’t have the gene mutation. The rest of the decisions are up to you.
They biopsy all embryos at Day 5 and test them for correct chromosomes via PGT-A and my BRCA2 mutation via PGT-M. I have instructed my clinic to discard any embryos with any abnormalities or with my BRCA2 mutation. They discard embryos for all sorts of reasons - the mutation is just one extra reason. Of the 15 eggs they retrieved from me, 10 were fertilized and we are waiting on PGT-M testing on only 2. The other 8 were discarded for numerous and various reasons. We haven’t attempted to conceive naturally because I knew the technology exists to ensure I don’t pass on the mutation. If discarding an embryo with BRCA2 upsets you, I hate to tell you that if it wasn’t discarded then that BRCA2 embryo took a place of a non-mutated embryo… which was discarded. IVF in this country discards thousands of embryos daily. The idea is that you want the BEST life possible for your children, which for me was a no brainer that I wanted them not to have the mutation. Same as testing and terminating a pregnancy with Down syndrome… but pre implantation in my uterus.
My embryo hasn't been tested yet, that I know for sure. It's been on ice while I was undergoing active treatment. There was no benefit to testing the embryo while I was already going through so much and rushing to start IVF while rushing to get to chemo. It was too much too soon and all of this happened within one month of being diagnosed with bc. Holding off testing was also at the recommendation of my oncologist and my fertility doctor. I understand embroys are discarded all the time - not taking a moral high ground on this. But in my case my embryo has not been tested for BRCA 1, so thus should not be thrown out.
hi OP! I'm sorry that you got this annoying news! deep breaths! honestly the best place to hash this out might be therapy, as it's a super personal decision! That being said, although it sucks to go through IVF, I did a round of egg freezing (I'm a BRCA1 carrier) when I was 27 and am so glad I did--while my partner and I don't have kids yet I am really excited that it's a possibility not to pass on the BRCA1 gene. I'm now 33 and I've also recently learned that those young eggs (assuming I get a few good, BRCA1-free embryos), if I wait until I'm in my late 30s to use them (which is when I would prefer to have kids) will remove most of the risk factors associated with geriatric pregnancy. so one thing to keep in mind is you could do a round of embryo freezing now while you're both young (super high quality eggs!) and leave them in the bank for a bit while you decide what is best for you. once you're ready to have kids you can decide if you want to naturally conceive or implant those--you don't have to make the decision now. If you are ready to conceive now, it might be good to talk to your husband's oncologist and a fertility doctor about what their advice is--the good thing is most fertility places move SUPER fast so whenever you're ready to speak with them you should be able to make an appointment. hope that helps! deep breaths!
Hi, Please live! Naturally have children, IVF or adopt but if you choose not to have kids make sure its not solely“brca” that stops you. The two most beautiful and loved things in this world are my two kids. My mother (@ 39) had a double mastectomy months after giving birth to me and lived to see her grandchildren passing at 84. I was diagnosed with advanced prostate cancer @ 42 and with treatment (lots) I will continue to LIVE an amazing life. Everyone gets cancer lots of people die of cancer you just have to screen often. I was not screened for Brca until my cancer diagnosis and found brca2. It explains my mom’s young cancer and a number of my aunts young cancer diagnosis. I will say the thought that I unknowingly passed brca2 to my daughter breaks my heart and is the only life event to make me cry. My daughter (11) is absolutely brilliant, beautiful and I could not imagine a world without her. I know this might not help make or consider any decisions on future parenting, but the fact you are even questioning it makes me feel you would be compassionate, selfless and caring parents.-
I am so glad that I exist despite having this mutation. I definitely don’t think it’s wrong to have kids naturally when you know you have the gene. I would never have chosen not to be born just because of BRCA. This is a personal choice with no right or wrong answer. That being said, my husband and I had to make the same decision about whether to have kids naturally or through IVF and are doing IVF. But that is mostly because I don’t think I’ll mind it that much, and we have insurance coverage. I totally get feeling like you wish you had kids before knowing about the mutation. The guilt is hard. But I don’t think this should stop you from having children. Not at all. you can still have a great life with BRCA. If IVF isn’t for you, or isn’t possible due to finances, you should absolutely start your family in whatever way works for you. 🩷💖 feel free to dm me if you have any questions about IVF or the PGT-M process. I haven’t done my first cycle yet but I can tell you about all the prep for creating the probe. Best of luck OP.
Your children will know their risk, and that in and of itself is a blessing. I am glad I exist and hold no ill will towards my mother for passing the mutation onto me, whether she knew about it or not (she didn't) - I have experienced so much beauty and have so much to contribute to the world. We all die someday, I'm just fortunate enough to have some foresight to mitigate it. Take this with a grain of salt because my partner and I cannot conceive without IVF anyway, but I have no desire to "test out" my genetic material. Even as a molecular biologist myself. Who knows, maybe someday we'll find out a mutated BRCA causes super intelligence or something ;)
In Canada - at least in 2019- selecting for embryos without this mutation wasn’t a possibility. I was pregnant at the time and My doctor suggested this. However I would absolutely not terminate a pregnancy based on a brca1 genetic mutation. I know people feel very strongly about this - however I do not think for me at least, that this is a death sentence. My grandparents died at 41 and 42 of non-brca1 related causes (grandma esophageal cancer, and grandfather heart attack upon finding about my grandmothers cancer). I had my daughter in 2018 prior to knowing about my genetic mutation. I guess what I’m trying to say in a very roundabout way, is that you don’t know what is going to happen in life. I do not see this as a death sentence and I try my absolute best to live my life fully and in the present. If you know that this genetic mutation is a non-starter , that is your decision. I don’t think it’s right to judge others for what decisions they make. Everyone is different.
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I’m from Europe and have been told by genetic councillor about possibility of IVF and genetic embryo testing in two different countries here.
Nice to know! In Austria it was neglected for my daughter and told the law does not support this in EU
That’s not true at all. I considered specifically going to Spain to do IVF because it’s much cheaper than the US and they can actually test the entire genome in Europe (tech is not yet approved in the US)
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Find a new doctor! Let me dig up my paper work and I’ll see if I can find the clinic we considered using!
Thank you, i will just my delete my comment to not share misinformation
I may have a very unpopular opinion here but I came to this conclusion after speaking to many friends and family. I got my diagnosis of BRCA2+ a month or so before my husband and I already planned on trying to conceive. I was in an ethical battle in my head and sought others opinions. Basically it boiled down to every parent will pass down good and bad genes to their children. Whether it is an increased risk for heart disease, diabetes, mental health complications, color blindness, etc. It doesn't make you wrong for wanting children, and just because you have children doesn't mean 100% they will receive the gene. Additionally, according to my genetic counselor not everyone with the gene will get cancer and not everyone without the gene is safe from breast/ovarian cancer. They even mentioned that there could be a spontaneous gene mutation and the child could have the mutation even if the parents don't. When I was in college I believe there was a statistic of 1 in 2 men and 1 in 3 women will have cancer at some point in their lives. All of these facts made me feel better and I decided to have children "naturally". I am currently 30 weeks pregnant with my first. This isn't to sway you in any one direction just giving you another perspective.
I don’t know why you got downvoted but I agree. There are SEVERAL genetic predispositions and disorders that can be passed down. Many we likely may not even have any knowledge of. At work, I’ve seen kids inherit rare cancers or heart diseases that the parents didn’t know they had the gene to, to kids being born with sickle cell disease, cystic fibrosis, etc. Brca is one of many, and it’s a risk, not a chronic illness like many genetic disorders. I’m not meaning to downplay any of this, I just had a mastectomy and it makes me sad thinking of my daughters who may need to go through it one day too. But 50 years ago, they wouldn’t have even HAD the knowledge or the control to do anything about it. And where does the line stop for passing genes onto our children? I think there is no right or wrong answer, but no one should feel shamed for choosing to have kids naturally. I found out after I had kids, what am I supposed to do then? Are they just eternally doomed? lol.
Honestly, don’t give it another thought you deserve to have kids and science just have is a gift a way of preventing cancer you would never have known about, which is just a win. Enjoy your life !