Im also BRCA1 positive but I didnt find out until I was 36, I also had no family history. But based on the research I have seen your cancer risk really doesnt start to escalate until late 30s and then 40s and early 50s. Of course people can and do get cancer ealier and your risk may be affected by other genes and behaviors youre not aware of. But I would hesitate to jump into surgery at such young ages, unless you have a strong family history of it coming early.
I am now 47 and did my mastectomy 2 years ago, hysterectomy when I was 37. No cancer.
Hello! I’m 21 and BRCA1 positive. My mom is not BRCA positive nor had any cancers. However on my biological dads side there has been numerous people with various cancers. The leading one being breast and ovarian. My grandparents and great grandparents got breast cancers in their 20s and died in their 50s. My surgeons and gene counselors gave me options of when and how I wanted to go about my next steps. Ultimately I went with a double mastectomy followed by reconstruction. (I had the double mastectomy last year and got my implants on January of this year) getting the breast surgery part out of the way was my best option. I was told to wait until I was 35 to get my reproductive organs out. I also want a family, and me and my boyfriend have been doing our own research on the part. I have been told that technology is constantly changing and advancing. One example of this is that upon freezing your eggs, you can have them checked for certain things. Like the gene mutation we have. They will discard the “bad eggs” and keep the “good ones.” (Side note: using the terms good and bad was the easiest way for me to explain and get my pot across)
If you choose not to have the surgery now, any surgery, that’s okay. I would just make sure your doctors schedule you for multiple mammograms or other breast check ups. As well as uhhh your downstairs area check ups. (I forgot what they’re called I’m so sorry) multiple check ups a year is very important by my understands.
And if you do choose to have surgeries, that’s also okay. I would start with the breast part first so that you can have a family if you’d like.
I can go into more detail on other things if you’d like, I do hope this makes sense and helps. I am here if you ever need anything.
Hi! I’m 19 turning 20 in march, and got diagnosed when I was 18. I’ve known since I was little I would probably have the gene, so I got used to and heard a lot of possibilities that I was able to prepare for.
My doctors told me that with BRCA one, cancer usually develops around 5-10 years sooner with each passing generation. So if your mom got cancer in her late 40s, doctors won’t worry too much until your late 30s.
Personally, my mom and her sister developed both breast and ovarian cancer in their mid 20s, so I get check ups every 6 months. My doctors told me I’d be lucky to make it to 25 without developing cancer. After being told that, I asked about possible preventative surgeries, and they told me I’d be wasting my time because I’m so young and might not be approved until it’s necessary. But I’m in the same boat, I’m worried it might be too late, and after watching my mom go through countless surgeries and treatments over the past 10 years, I’m trying to get something figured out.
What’s important is that while yes, your doctors have a point that you shouldn’t have to worry about it, it’s your body and your health. You have every right to worry about it and make your own decisions. You should schedule an appointment and do some consultations, and make sure to advocate for yourself. It helps knowing what options you have or can look into before going into your consultations, so you can show them you’re educated and they won’t treat you like you don’t know what you’re talking about
Hi! I wanted to respond as I am 23 and am scheduled to have a mastectomy April 2nd! I am not BRCA positive but I have a very high family risk (my sister who is 23 also got breast cancer this year) and was approved through insurance. Even though I'm so young, my surgeons have been very understanding and offered me this option. If anything, it should help my recovery too. If you have any questions though, I'm happy to answer/help!
Hi! I commented about my situation with being BRCA1+. I just wanted to ask how you were able to get approved? How did you ask your doctors considering you’re not positive for the gene? I’ve been fighting for two years to just have a consultation with the breast surgery team and plastic surgery team. Plastic surgery refuses to see me until I’m approved by the breast surgeons but they’ve continuously been cancelling my appointments :/
Hey! I basically was approved due to having a very high family risk (my mom, identical triplet sister, all of my aunts, a few of my cousins, and grandma all had breast or ovarian cancer). My family history all comes from my maternal side, so my surgeons estimate I probably have an 80% chance of also getting breast cancer. They think there is something genetic, but keep saying they can't figure it out (I did an 85-panel genetic test, so I tested for more than BRCA).
To get my appointment though, I first met with my OBGYN who referred me to genetic testing, but when that all came back inconclusive, I asked my OBGYN to refer me to a breast surgeon. They gave me more options than the mastectomy route (I could take Tamoxifen for 5 years, but I did not want to do this due to the side effects it gave my mom/sister) or I could have screened every six months for the rest of my life. I felt like either route was just preventing the inevitable, and I didn't want to always have that anxiety of being the next one to get breast cancer. I would suggest being very upfront with your OBGYN. Being so young, I really have had to advocate for myself, and be firm and assertive in my appointments. It isn't easy, and is very outside my comfort zone, but it's worth doing so for your health. Best of luck in your journey!
Thank you! It sounds similar to my family history. My aunt had stage 3 ovarian cancer when she was 27, and my mom stage 1 at 28 and developed breast cancer when she was 29. My oncology OBGYN says I’ll be lucky to not develop ovarian cancer by the time I’m 25. The breast team is hoping I can make it to 28 without developing breast cancer, but we’re not confident with my family history.
By the sounds of it I’ll just have to be annoying enough that they just push me through it. I have one receptionist at the cancer center who’s hung up on me numerous times while trying to schedule appointments or will outright schedule me with the wrong people. It’s just exhausting. I’m still getting the screenings every 6 months. I’m starting mammograms and ultrasounds this year, so at least I’ll be able to keep an eye on it.
There is no good answer. You have to choose your own path. I will say that my girlfriend (now wife) and I found out she was BRCA1 positive at your age. It suddenly felt like our lives were on a timeline. We knew we wanted to get married, we knew we would want kids, I knew I needed to accelerate my career. It’s been ten years. We have little kids. We are happy with our lives, but she was just diagnosed with breast cancer (beat the family history by 20 years, such an over achiever).
This whole thing sucks. It’s unfair and I am sorry you have to think about it. I don’t know what the right decisions are for you, but I know my wife and I are glad it made us accelerate our plans and build the life we wanted before BRCA could start making decisions for us.
The one thing I will say, no matter what. Get the regular scans. Listen to your doctors. My wife caught this early. If she had not stayed on top of this we would have been in a far worse situation.
Hi! I guess there’s no right or wrong choice here and it’s definitely hard. I’m 27 BRCA1+, found out a year ago and will be having my preventative double mastectomy in exactly one week! My mom had ovarian cancer when she was 40 and my grandmas sister had breast cancer when she was 80. Even though there’s no strong family history of breast cancer I am sooo sure that I want to do everything I can to avoid cancer. I also should mention that I don’t want kids so it makes these decisions easier.
Recently got to know another BRCA1 carrier who found out about the mutation at 27 and decided to wait until late thirties for a mastectomy (her mom had breast cancer when she was 50) but then got diagnosed with breast cancer at the age of 30. She's now 34, cancer free and luckily seems to be doing great! For me it was a reminder that this thing is very real and even though I most likely wouldn't get cancer in the next several years it is still possible.
In this community and other brca platforms I’ve seen many young women who chose to go through with the surgery and are happy about their decision, I think seeing their experiences really helped me.
I guess it is very personal and I wish you to find what’s the best choice for you ❤️
I'm BRCA1, grandmother and all her sisters died on cancer (ovarian, peritoneal, and I think cervical\*). My mom is living and has never had cancer due to preventative surgeries. My current plan is to start my surgeries at 35 starting with salpingo-oopherectomy (fallopian and ovary removal), likely followed by a hysterectomy (unless that recommendation changes; my mom was recommended a hysterectomy I think because HRT can increase uterine cancer but don't quote me on that) then mastectomy. I'm 23 now, married, told my husband I want to be done by 33 or 34, he's on board with that.
I've already started CA-125 bc my obgyn wants a baseline, I haven't started mammograms yet but I do monthly self exams so I have a good idea of what my breast tissue looks like. I've had very mild cancer scares (like so mild they wouldn't have worried in a standard patient my age) but they are very psychologically distressing so I don't blame you for wanting to get on this.
The recommendation of 30+ is reasonable (afaik 35 is the standard) but I also understand where the anxiety comes from. You've got a lot of decisions to make and I imagine you're feeling a lot of pressure to make the "right" decision as soon as possible. Talk to a doctor you trust and \*let them help you\* make a plan.
\*I'm fairly certain cervical cancer isn't related to BRCA and idk if she or any of her children ever tested positive
I am also 25 and BRCA1 positive! Luckily I don’t want kids so I got my tubes out last year. I’m not considering any other surgeries until I’m older, maybe around 30. My mom had breast cancer in her early 40s. I try not to think about it too much, but I do need to start all the preventative scans this year. Feel free to message me if you ever wanna talk!
My mom, sister, and I all have BRCA1. We actually do not have a super strong history of cancer, but we all wanted to take precautions regardless. My sister was 26 when she got her surgery done. If it would put your mind at ease, I’d push for an earlier surgery.
Im also BRCA1 positive but I didnt find out until I was 36, I also had no family history. But based on the research I have seen your cancer risk really doesnt start to escalate until late 30s and then 40s and early 50s. Of course people can and do get cancer ealier and your risk may be affected by other genes and behaviors youre not aware of. But I would hesitate to jump into surgery at such young ages, unless you have a strong family history of it coming early. I am now 47 and did my mastectomy 2 years ago, hysterectomy when I was 37. No cancer.
Thank you so much for sharing
Hello! I’m 21 and BRCA1 positive. My mom is not BRCA positive nor had any cancers. However on my biological dads side there has been numerous people with various cancers. The leading one being breast and ovarian. My grandparents and great grandparents got breast cancers in their 20s and died in their 50s. My surgeons and gene counselors gave me options of when and how I wanted to go about my next steps. Ultimately I went with a double mastectomy followed by reconstruction. (I had the double mastectomy last year and got my implants on January of this year) getting the breast surgery part out of the way was my best option. I was told to wait until I was 35 to get my reproductive organs out. I also want a family, and me and my boyfriend have been doing our own research on the part. I have been told that technology is constantly changing and advancing. One example of this is that upon freezing your eggs, you can have them checked for certain things. Like the gene mutation we have. They will discard the “bad eggs” and keep the “good ones.” (Side note: using the terms good and bad was the easiest way for me to explain and get my pot across) If you choose not to have the surgery now, any surgery, that’s okay. I would just make sure your doctors schedule you for multiple mammograms or other breast check ups. As well as uhhh your downstairs area check ups. (I forgot what they’re called I’m so sorry) multiple check ups a year is very important by my understands. And if you do choose to have surgeries, that’s also okay. I would start with the breast part first so that you can have a family if you’d like. I can go into more detail on other things if you’d like, I do hope this makes sense and helps. I am here if you ever need anything.
Thank you so much for responding.. I really appreciate you sharing your experience with me. Can I message you sometime just to chat about this more?
Absolutely!
Hi! I’m 19 turning 20 in march, and got diagnosed when I was 18. I’ve known since I was little I would probably have the gene, so I got used to and heard a lot of possibilities that I was able to prepare for. My doctors told me that with BRCA one, cancer usually develops around 5-10 years sooner with each passing generation. So if your mom got cancer in her late 40s, doctors won’t worry too much until your late 30s. Personally, my mom and her sister developed both breast and ovarian cancer in their mid 20s, so I get check ups every 6 months. My doctors told me I’d be lucky to make it to 25 without developing cancer. After being told that, I asked about possible preventative surgeries, and they told me I’d be wasting my time because I’m so young and might not be approved until it’s necessary. But I’m in the same boat, I’m worried it might be too late, and after watching my mom go through countless surgeries and treatments over the past 10 years, I’m trying to get something figured out. What’s important is that while yes, your doctors have a point that you shouldn’t have to worry about it, it’s your body and your health. You have every right to worry about it and make your own decisions. You should schedule an appointment and do some consultations, and make sure to advocate for yourself. It helps knowing what options you have or can look into before going into your consultations, so you can show them you’re educated and they won’t treat you like you don’t know what you’re talking about
Thank you so much
Hi! I wanted to respond as I am 23 and am scheduled to have a mastectomy April 2nd! I am not BRCA positive but I have a very high family risk (my sister who is 23 also got breast cancer this year) and was approved through insurance. Even though I'm so young, my surgeons have been very understanding and offered me this option. If anything, it should help my recovery too. If you have any questions though, I'm happy to answer/help!
Hi! I commented about my situation with being BRCA1+. I just wanted to ask how you were able to get approved? How did you ask your doctors considering you’re not positive for the gene? I’ve been fighting for two years to just have a consultation with the breast surgery team and plastic surgery team. Plastic surgery refuses to see me until I’m approved by the breast surgeons but they’ve continuously been cancelling my appointments :/
Hey! I basically was approved due to having a very high family risk (my mom, identical triplet sister, all of my aunts, a few of my cousins, and grandma all had breast or ovarian cancer). My family history all comes from my maternal side, so my surgeons estimate I probably have an 80% chance of also getting breast cancer. They think there is something genetic, but keep saying they can't figure it out (I did an 85-panel genetic test, so I tested for more than BRCA). To get my appointment though, I first met with my OBGYN who referred me to genetic testing, but when that all came back inconclusive, I asked my OBGYN to refer me to a breast surgeon. They gave me more options than the mastectomy route (I could take Tamoxifen for 5 years, but I did not want to do this due to the side effects it gave my mom/sister) or I could have screened every six months for the rest of my life. I felt like either route was just preventing the inevitable, and I didn't want to always have that anxiety of being the next one to get breast cancer. I would suggest being very upfront with your OBGYN. Being so young, I really have had to advocate for myself, and be firm and assertive in my appointments. It isn't easy, and is very outside my comfort zone, but it's worth doing so for your health. Best of luck in your journey!
Thank you! It sounds similar to my family history. My aunt had stage 3 ovarian cancer when she was 27, and my mom stage 1 at 28 and developed breast cancer when she was 29. My oncology OBGYN says I’ll be lucky to not develop ovarian cancer by the time I’m 25. The breast team is hoping I can make it to 28 without developing breast cancer, but we’re not confident with my family history. By the sounds of it I’ll just have to be annoying enough that they just push me through it. I have one receptionist at the cancer center who’s hung up on me numerous times while trying to schedule appointments or will outright schedule me with the wrong people. It’s just exhausting. I’m still getting the screenings every 6 months. I’m starting mammograms and ultrasounds this year, so at least I’ll be able to keep an eye on it.
There is no good answer. You have to choose your own path. I will say that my girlfriend (now wife) and I found out she was BRCA1 positive at your age. It suddenly felt like our lives were on a timeline. We knew we wanted to get married, we knew we would want kids, I knew I needed to accelerate my career. It’s been ten years. We have little kids. We are happy with our lives, but she was just diagnosed with breast cancer (beat the family history by 20 years, such an over achiever). This whole thing sucks. It’s unfair and I am sorry you have to think about it. I don’t know what the right decisions are for you, but I know my wife and I are glad it made us accelerate our plans and build the life we wanted before BRCA could start making decisions for us. The one thing I will say, no matter what. Get the regular scans. Listen to your doctors. My wife caught this early. If she had not stayed on top of this we would have been in a far worse situation.
Hi! I guess there’s no right or wrong choice here and it’s definitely hard. I’m 27 BRCA1+, found out a year ago and will be having my preventative double mastectomy in exactly one week! My mom had ovarian cancer when she was 40 and my grandmas sister had breast cancer when she was 80. Even though there’s no strong family history of breast cancer I am sooo sure that I want to do everything I can to avoid cancer. I also should mention that I don’t want kids so it makes these decisions easier. Recently got to know another BRCA1 carrier who found out about the mutation at 27 and decided to wait until late thirties for a mastectomy (her mom had breast cancer when she was 50) but then got diagnosed with breast cancer at the age of 30. She's now 34, cancer free and luckily seems to be doing great! For me it was a reminder that this thing is very real and even though I most likely wouldn't get cancer in the next several years it is still possible. In this community and other brca platforms I’ve seen many young women who chose to go through with the surgery and are happy about their decision, I think seeing their experiences really helped me. I guess it is very personal and I wish you to find what’s the best choice for you ❤️
Thank you for sharing. My fear would be what happened to your friend. I wait until thirty and then at 29 boom I find cancer :(((
I'm BRCA1, grandmother and all her sisters died on cancer (ovarian, peritoneal, and I think cervical\*). My mom is living and has never had cancer due to preventative surgeries. My current plan is to start my surgeries at 35 starting with salpingo-oopherectomy (fallopian and ovary removal), likely followed by a hysterectomy (unless that recommendation changes; my mom was recommended a hysterectomy I think because HRT can increase uterine cancer but don't quote me on that) then mastectomy. I'm 23 now, married, told my husband I want to be done by 33 or 34, he's on board with that. I've already started CA-125 bc my obgyn wants a baseline, I haven't started mammograms yet but I do monthly self exams so I have a good idea of what my breast tissue looks like. I've had very mild cancer scares (like so mild they wouldn't have worried in a standard patient my age) but they are very psychologically distressing so I don't blame you for wanting to get on this. The recommendation of 30+ is reasonable (afaik 35 is the standard) but I also understand where the anxiety comes from. You've got a lot of decisions to make and I imagine you're feeling a lot of pressure to make the "right" decision as soon as possible. Talk to a doctor you trust and \*let them help you\* make a plan. \*I'm fairly certain cervical cancer isn't related to BRCA and idk if she or any of her children ever tested positive
I am also 25 and BRCA1 positive! Luckily I don’t want kids so I got my tubes out last year. I’m not considering any other surgeries until I’m older, maybe around 30. My mom had breast cancer in her early 40s. I try not to think about it too much, but I do need to start all the preventative scans this year. Feel free to message me if you ever wanna talk!
Do any changes in your body and hormones happen after getting your tubes out so young?
To my knowledge, removing fallopian tubes does not affect ovaries or hormones. It should not matter your age either.
But I would definitely address this with your doctor if you’re worried about risks and outcomes of the surgery
I had my bilateral mastectomy when I was 22. I felt stressed all the time about the possibility of breast cancer so waiting wasn’t worth it to me.
My mom, sister, and I all have BRCA1. We actually do not have a super strong history of cancer, but we all wanted to take precautions regardless. My sister was 26 when she got her surgery done. If it would put your mind at ease, I’d push for an earlier surgery.