21, Brca 1 Positive, Scared Out Of My Wits

I hate it when the first reaction is "but your young and healthy, you're not going to get cancer". They might be right, I might not. No, there is about a 20-40% I may not. However, turn the table and it's now 60-80% I may. Don't tell me I have nothing to worry about.

So far my life has been interesting. Very dramatic. Everything from my dad going to rehab suffering from depression, to my aunt finding yet another cancer, to my sister and her bi-polar like mood swings. And throughout all of it, I've always known in the back of my mind that I might have this 'cancer gene'.
It wasn't until a couple of months ago I was watching a documentry about the BRCA 1 mutation and how this 18 year old girl was debating whether to be tested for it. My mum was very moved by it and at the end she reminded my sister and myself that our dad has the gene. To my surprise my 24 year old sister (who had previously said she would get tested at 25) wasn't really interested. However, what surprised me more was that I couldn't get my mind off it. For the first time, I had stopped and thought about it and the possibilities. I couldn't sleep that night. And I was much worse in the morning.
I went to work as usual that day and couldn't stop thinking about it. Being emotional and sleep deprived I started crying on the train. (that's when I found out its always a good idea to carry tissues. Thank goodness for my scaf). So when I hit to work in that state my boss asked me if I was ok and I spilled everything. Then she said it: "but your young and healthy, you're not going to get cancer". H E L L O! Weren't you listening?I
So I decided to visit my doctor that day and get tested for the mutation. But since I saw how disturbed by the documentry my mum was, it was clear to me that there was to be no discussion about it. I went to the doctors alone and in secret.

After my family gp referred me to a doctor in the hospital I desided to finally give in and balled my eyes out to my best friend. Thank god for best friends! She didn't try to console me by saying 'you'll be fine', she sat me down with a box of tissues and went through each and every possibility with me, what I would do, how I would do it and that made me accept the fact that it's ok if I have the gene. I wasn't dead yet.

A month flew by and I finally received a call from this doctor at the specialist hospital and I made an appointment. That day, on the way home from work I received a call from frantic mum. She found the referral papers. So as she picked me up from the station we talked about it untill my mouth ran dry. We both decided that we wouldn't let my sister know untill She was tested.

A week or so went and mum came with me to my blood test. Had a few vials of blood taken and left. Too easy! 6-8 weeks they said. Well 5 weeks came and I had a phone call to schedule another appointment. Then, wham! You're BRCA 1 positive.. Can you imagine how embarrassing it would have been to go back to my boss and say "you're right! I over reacted!"?

So here I am. 2 weeks later. I'm scared. I want kids, but not now! I don't even think I want to get married! I want to keep my boobs, they're big and nice!
How do I make these decisions? Am I scared for nothing much? Is it wrong for me to be looking up BRCA 1 positive previvor stories late at night?
I don't know... It's scary.
LadyAdelaide LadyAdelaide
18-21, F
5 Responses Sep 21, 2012

You have no reason to be worried about your reaction. Although breast or ovarian cancer is not a diagnosis when you find you're positive, it's some serious business and is not to be taken lightly. I am 2 weeks into 28 and am in the same boat. Do I need to have kids now? Should I freeze my eggs? Should I get them cut off now, but....they're at their best!

The answer is for each person to decide. It's rough when this type of ailment (?). Doesn't hit until later in life so docs are unprepared to counsel a young person as we.

Here are some thoughts I keep close to the chest (!):
Hey, at least my boobs will always look nice, way after I've finished breast feeding!
I could always go up a size (nice thought although not a requirement)
Worst case scenario I'll never get a period again
Best case scenario I'll have prevented a major downer in my life.

Not words of wisdom just thoughts from someone who saw mom go through chemo this year from surprise 30+ year post mastectomy. Stay strong mama.

It's really good that you've already tested at such a young age, and you're right, most people think if you're young and healthy you don't need to worry about it. Almost every woman in my family for multiple generations has had breast cancer. There was distant cousin that died at 19 and another cousin who's cancer matastesized to the brain and passed at 25. My 28 yr old sister was diagnosed and positive for BRCA1, and I finally decided to get tested. I was 19 and absolutely terrified of being positive (which I was).. When they caught my sisters cancer they said if it had been 6 months later it would be a different story. So when my doctor told me they wanted me in for mammograms every 6 months all I could think was that 6 months could be a huge deal. I thought it through and decided to have a double mastectomy. It's not an easy decision to make, but I knew that as hard as it would be emotionally, I would rather live knowing that if I started a family I wasn't going to be worried all the time. Emotionally it's hard knowing I'll never breastfeed, but I also know I won't have a 2 year old waiting at home while I went through chemo like my mom. I am so thankful I did what I had to do so early, because they found precancerous cells on 1 side. So my best suggestion is to look at your family history and then ask yourself what your risking.

Thank you for sharing your story! Take courage and know that just by finding out you took the first steps towards saving your life. You are not alone in this as there are many of us out there. Getting informed and having a doctor that's familiar with BRCA is all you need. Keep up with routine checkups and you'll be okay. Don't let someone talk you into something you feel wrong about. I too was told I'd have to have my breasts removed. I chose instead to keep my puppies so I need yearly mammograms. If I do develop breast cancer we can catch it early so there is hope.

I'm in the same boat as you. I'm 22 years old and I've known since I was legally able to get genetic testing at 18. I love my breasts and I'd give anything to have children. Right now I'm just scared because I'm alone. People don't understand, especially since we are so young. I've been on other support sites and I gotten responses from 40+ year old women trying to console me but I just get mad because they have everything! They have a husband and children and they can't understand the fear of rejection or not having that life. The only thing I can offer is understanding and friendship though...I wish I had words of advice and comfort to offer but all I can say is that you aren't alone. If you ever need anything I'll be happy to help in any way I can. It hurts me to know someone else is suffering like I am.

I just found out 3 days ago that i am BRCA 1 positive as well. I am 27 with two little boys. I know how scared you are(especially since your younger than i am). It is a frightening thing and you have every right to feel the way your feeling. We all do. My mother fought breast cancer for 7 years and died at 46. My aunt fought for 5 and died at 35. so on and so fourth in my family so i knew my chances were very high bc my mother also had the gene. I tried to look at it as i'm thankful that my mother was tested and fought as hard as she did, otherwise that could be me. She gave me a fighting chance to know what i'm up against and to be able to do something about it before i'm diagnosed. I will be having a full hysterectomy first bc i don't want anymore kids. Then i plan on having both breast removed and reconstructive surgery done. My doctor informed me that i could do both at once and insurance companies have to cover it now that i have the gene. My sister is 24 and also has the gene. She wants kids so she'll be waiting a few more years. Till her surgery she'll be doing all the screenings and taking the chemo pill that they offer which will lower her chances! You have soooo many options and you can stay right on top of it so if you do end up getting breast or ovarian cancer you have a fighting chance. Really think about all your options before you decide something drastic. I have two children that need me and i plan to do everything i can to fight.. I know your young but you have the strength to get threw anything! We all do it's just your frame of mind! Your not alone and have support, here and at home. Keep your head up and keep moving forward!