BRCA2 Gene Positive**Needing advice**
Hi, I'm 25 years old and I've recently found out I was BRCA2 gene positive. The doctors are recommending I get a bilateral mastectomy an a hysterectomy. My mom is a 2 year survivor diagnosed 2 years at age 50 I've also had an aunt that passed at age 35 from breast cancer and a great grandmother that passed at age 70 and she had been diagnosed twice! I'm just here to get some opinions and read other stories as to what I should do. My mom thinks because of my age I should try to hold off for a while because she strongly believes they'll find a cure soon, but for me it annoying to walk around and every time I feel a pain in breast or experience discharge from my breast which I've been told it's protein/blood I get scared and think It's cancer. I'm also very aware that cancer has no age. I also received a MRi and was suppose to follow up every 6 months but couldn't because I lost my job/insurance. Just give me any feedback you guys may have for me
Comments
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Hi Wilmeika,
My heart goes out to you - you are so young to have to deal with this type of decision. Overall, you have to decide what is best for you. No one can predict what is going to happen, so you have to make the decision that you can live with. Frequent screenings and early detection is key. Expensive if you have to pay out of pocket, but not as expensive as full cancer treatment.
I am BRCA 2 positive as well. While I had no family history of breast or ovarian cancer, I have stage IIb breast cancer - diagnosed at 38. I completed 6 rounds of chemo and will be heading to surgery within the next 2 weeks for a bilateral mastectomy, then radiation for 6 weeks. Doctors are also calling for me to cut out my ovaries and fallopian tubes due to being extremely high risk. I am doing research on the latest studies and findings for ovarian cancer to help me make a decision. Some research suggests that one type of ovarian cancer begins in the fallopian tubes then spreads to the ovaries, so I am considering just cutting those out for now. But I could get a tubal ligation and reduce the risk that way too. There is much more information available to help you decide. Remember, you don't have to go with the all or nothing approach. Doctors are trying to reduce the risk to less than 1%, so they will recommend anything to get you there.
As my oncologist says, at the end of the day, you know if you are someone who wants to play the odds and how much risk you are will to take. His job is to keep me alive no matter what decision I make.
Best wishes to you -
Alex
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Thanks so much my prayers are with you as you undergo surgery. This info helps a lot knowing that a tubal ligation also reduces your risk because I already have my tubes tied so that's a good thing to know.
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Hi Wilmeika, We are really sorry that you are going through this at such a young age.
You may find this section helpful to read, if you haven't already:
What to Do if Your Genetic Test Results Are Positive
We're all here for you!
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Hello,
I'm BRCA2+ as well. I had a double mastectomy after a DCIS diagnosis when I was 36 and then I had my ovaries removed last year at 37. The FORCE website ... www.facingourrisk.org is a great resource. There is a forum there, as well as lots of helpful articles as you try to wade through the decisions.
Having my mastectomy was an "easy" decision because of my diagnosis. My mother died of BC when I was a teenager and it was something that had always scared me. Having my BSO was a harder decision for me. Because I had DCIS and it was hormone receptor positive, my health care team doesn't want me taking hormone replacement. Because of that I'm in surgical menopause. It is not fun but there are health risks associated with the loss of estrogen which are upsetting. If I had not had any BC than I could have taken hormone replacement. But hindsight is 20/20. I don't know what I would have done if I had found out I was BRCA2+ beforehand. That is why knowing all the options is helpful as well as hearing from others in your situation. There are many woman on the FORCE website forum that are previvors and are dealing with the same situation you are.
Being BRCA2+ your risk of ovarian cancer isn't as high as BRCA1+ and the risk goes up at around 40 years. Since you are 25 your risk of ovarian cancer at your age is really low at this point. That being said, some woman choose to remove their ovaries and tubes before they have a mastectomy as it reduces your risk of BC.
I can understand why your mom doesn't want you to go through all the preventative surgeries. But, like you said, cancer knows no age. I wish there was a way to repair our DNA but I don't think that will happen in the near future.
I'm sorry you have to deal with all of this. Knowing I had the mutation was very upsetting, but I'm glad I know and I can take steps to reduce my risk. Whether you choose surveillance or surgery, you will be taking steps to reduce your risk as well. Best wishes.
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THANK YOU I WILL BE CHECKING THAT WEBSITE OUT SORRY YOU HAD TO GO THROUGH THAT AS WELL.
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THANKS
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Hi
I am also 25 and just was tested for the BRCA2 test a few weeks ago because my mother has the gene. I found out on Thursday night that I tested positive too and have been really upset the last few days. My mom didn't find out that she tested positive until she was 57 and luckily she had never had any cancer yet. But because of the risk she decided to get both the double mastectomy and ovary surgeries. It was horrible to watch her go through that and now I have to think about these options myself. For now, I am just gong to do surveillance with MRI's every year and clinical exams with a doctor every 6 months. I want to have babies so will not get my ovaries out until after that, but now knowing this information I feel that I will want to have a family sooner in life so that I can get them out since it lowers the risks so much.I am trying to reframe this and think about it as a blessing that I know so early, that knowledge is power and that knowing I have the gene and the high risk is os much better than finding out after I already had cancer. But it is still very upsetting and scary and seems like a big burden to know so early in life and have this in the back of my head at such a young age. I'm happy to find a group where I can talk about this with others who have experienced it so thank you for posting!
Rachel
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Welcome Rlk and thank you for sharing your story! We look forward to hearing more from you!
--The Mods
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Rachel sorry you're experiencing this as well our stories are very similar I hate that we have to face this situation at such a young age especially being that you haven't started your family yet! I am actually scheduled for a mammogram on Tuesday due to a mass the doc found in my right breast hoping everything goes well but either way this appt goes after this I've decided I'm def having my double mastectomy after the New Years please keep in touch and share updates it's nice to know I'm not the only one
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Wilmeika -- keep us posted on how Tuesday goes. We're all here for you!
--The Mods
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Wilmeika and Rachel, there is new information coming out about BRCA all the time, so be sure you get to meet with not just any doctor, but one who is a genetic counselor who works in women's cancers. You want to have the latest recommendations, and personalized recommendations, about if and when to have surveillance and/or surgery for your breasts and ovaries, and in what order. Wilmeika, if I were you I would try to get a genetics consult at the University of Alabama at Birmingham Comprehensive Cancer Center, which serves your state. You are very young, and you want to get really good advice. Even if you have to pay something.
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I'm usually keeping up with the newest info being that. It's always on my mind anIve also had genetic counseling here in Columbia, SC at the Universitiy Specialty Clinics Genetic testing center and they actually recommended the prophylactic bilateral mastectomy and a total hysterectomy being that I've already had a bilateral tubal ligation they were actually doing both surgeries together I've been through the process even insurance and approval and backed out at the last minute
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