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BRCA2

chrissyml
Posts: 2
Joined: Aug 2012

I have not been diagnosed with cancer but the rep at the ACS number encouraged me to post here. My mother died of breast cancer (diagnosed at 32, died at 45) and several women in her family had it. I am 33 and got myself tested for the gene this summer. On Tuesday I found out that I am positive for BRCA2. I was expecting this news but it's still jarring.

I guess what I need to do is decide how to proceed from here. I don't know where to begin looking for options except to ask my doctor. My doctor and the genetic counselor have already given me an overview of what some of the options are with a positive test result; I was told when I got the call on Tuesday that I should take some time to process it and then call my doctor for a follow-up appointment.

Honestly, I have spent more time reassuring friends and family than actually figuring out what I want to do from here.

Any input? Is anyone in the same spot I am in?

roseann4
Posts: 994
Joined: Sep 2009

you had to also deal with a cancer diagnosis. Take all the time you need to decide on a course of action. Christina Applegate spoke on Oprah show about her decision to have a double mastectomy. She did not want her life to revolve around her next mammo and worrying if the next one would show cancer. No one but you can make the decision. Hugs!

Roseann

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Hi Chrissyml! I am very glad to know that you don't have bc! I am sure you are upset knowing that you tested positive for the BRCA2 gene, but, and I could be wrong, I don't think this means that you will get bc in your lifetime for sure, or, have you been told differently? It means that you could as far as I know, not that you will.

You do need to talk to your doctor and get all the information that you can in order to decide what you might do. The American Cancer Society and possibly your doctor can even have you talk to other women that are or have tested positive to see what their choices were.

There is no guarantee, even with a lumpectomy, rads, chemo, a mastectomy and hormone therapy that any of us won't be fighting again.

Just educate yourself and decide what is best for you, for your peace of mind. And, don't rush into anything. Take your time.

I wish you the best and pray that you will always remain cancer free!

Hugs, Debby

chrissyml
Posts: 2
Joined: Aug 2012

Thanks for the kind words.

No, it's not a guarantee, and I'm not scared at this point. My doctor told me that it means that I have a 60-80% chance of breast cancer at some point in my life, and that it also raises my chances for ovarian. The literature from the testing company said "up to 87%." I like my doctor's stats better. ;)

Right now I'm just reflecting. I don't feel like I need to make any radical decisions right now, but I will be keeping up with my screenings! I am only 33 by my mom was 32 when she was diagnosed, so I'm not counting on my age being on my side. ;) Just doing some reflecting and some research but not getting too scared. I've had this gene my whole life, and the testing doesn't actually change anything. It's just information to get used to. :/

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

My cousin volunteers for an organization that helps patients with Brca mutations. Their website is FORCE, Facing Our Risk of Cancer Empowered. There are message boards where you will find patients with histories like yours. You can see what they did and why. I think it will be a place to gather info and possibly find out the questions to ask your doctors. Also, there may be local support groups of Force patients. Good Luck!

RozHopkins
Posts: 446
Joined: Dec 2010

I am not BRCA positive which surprised me as my mum had breast cancer three times as well aunts. When I was in my thirties a doctor told me after giving my family history to have mastectomies and I was totally shocked. Looking back I wish I had done exactly what she suggested as now have bilateral from one of the cancers mamos rarely pick up on. If done then before cancer had started developing instead of when it did, I wouldn't be thinking has some been missed and lurking. Hard choice, but your choice. These are just my personal feelings, good luck whatever you decide.

New Flower
Posts: 3938
Joined: Aug 2009

I am sorry that you lost your mom so early. Sorry that you have been diagnosed with this mutation.
The good news - you do not have cancer now & you have knowledge about your mutation, so you can make choices which is right for you. Knowing your % is helping you with different options . I was tested for these mutations as I was diagnosed at 46. While I was waiting for results my genetic counsel prepared me to think and develop a plan what if. Ovary is a biggest concern as it very difficult to detect and always goes missing to the late stage. It is a hard decision, i hope you will also consult with your family, your partner.
Hugs

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I think the website that Cathy P put up would be a great place to go see what others say and what they have done. What you do is entirely up to you.

All I can say is that if it were me, I doubt I would do anything, but, that is just me. I mean I would have mammo's early and ultrasounds and maybe a MRI every now and then. But, I wouldn't have a mastectomy just because I tested positive.

Good luck, Megan

Farmgirl2151's picture
Farmgirl2151
Posts: 12
Joined: Aug 2012

Hi there, I have been recently diagnosed with breast cancer and had a double mastectomy just about three weeks ago. I am awaiting my test results for the BRCA so it's a little nerve wracking. I however have a friend who lost her mother to breast and some other kind of cancer when the mom was in her forties. They knew she was BRCA positive so Jess, my friend, decided to get tested. She too was positive. She has since had a double mastectomy with the tram flap which is where they used her tummy fat to make her new boobies instead of using implants, she is only 25 and has two very Young daughters but is doing great! She has also decided to have an oopherectomy some time down the road just to be safe. She has an incredible positive attitude which I believe is so important. This stuff is still very new to me but I am hanging in there and plugging away. The wind has been taken out of my sail but not for long! I am recovering well and have a great support system. I am 36 with two young kids nada wonderful husband who have helped me so much. Keep your chin up and if you ever have any questions just let me know, I know my friend would LOVE to visit with you. She is so packed full with info on this. I can even find out if she is on this website. I only joined two days ago. :). Just remember to be strong and don't live in fear. Easier said then done, I know but I needed someone to help me see that and hopefully this will be helpful to you. Take care. Pleased don't hesitate to ask questions. :).

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