BRCA2 + with major family history

Hello dsmitzy, I'm sorry you have to go through this, especially so young. I too have tested positive for the BRCA2 mutation, along with my sister, and my 2 daughters who are 24 and 26. They see a specialist, and are getting tested every 6 months with an ultra sound and blood work. They've been encouraged to see a dermatologist as well. Since I found out after having my 2nd diagnosis of breast cancer when I was 50, I decided to have my ovaries and fallopian tubes removed and to have a mastectomy with reconstruction 2 years ago. My sister did the same. So far so good.... You will want to get options concerning how you want to follow up with this diagnosis. whether to have surgeries or to have bi annual check ups. When I went to genetic counseling, I was told that I had an 86% chance of getting breast cancer again in my life time  or ovarian cancer. My paternal grandmother had both. This is why I chose the surgeries. My daughters wish to have their children first before going on with the surgeries which they know are in their future. We all take one day at a time. I hope this is helpful.

Be strong,

Carla

Hi Dsmitzy,

In addition to the helpful advice Carla gave, the main Breastcancer.org site offers information on What to Do if Your Genetic Test Results are Positive.

We hope this helps, and best of luck to you!

--The Mods

I also BRCA2+. I am 42. Based on family history, I was being very closely monitored and had DCIS on left side detected by routine MRI. Then Iwas tested for the gene. I had BMX in August and will have tubes and ovaries removed in the next couple of months.



As far as questions go, I would ask about whether they reccommend full hysterectomy or just tubes and ovaries. You did note nation whether you had children. If not, you will want to ask questions about fertility issues. In addition, you will want to discuss the side effects is surgical menopause, whether you can take hormones or not, etc.



If you have not been to the fORCE website, I would highly recommend it. In addition, there is an organization called BRIGHT PINK, which is for young wen who are high risk for breast and ovarian cancer. Finally, there is a great closed group on Facebook called BRCA Sisterhood. You can ask to be added.



Heather

What they are given is a probability number as opposed to a 'real' specific number. Probability numbers all have some type of variance so you're being given a range is more realistic than being given a specific numbers.  It's just statistics.

I am a bit unusual. I am 38.  My mother didn't have breast cancer, neither did my grandmother on either side. My dad's family has NO history of BC/Ovarian at all. My mom's sister died of breast cancer last year and my 33 year old cousin developed ovarian cancer, her mother is 65 and has never had breast/ovarian. No one on her dad's side had it all. The geneticist says that it has to come from my maternal grandmother. THe ovarian cancer my cousin developed was not due to BRCA. She is overweight and the ovarian cancer she had the pathologist said you find in overweight individuals so it was just a chance her doctor did a BRCA test. My first cousin is BRCA2 positive. The geneticist evalutated our family history and determined my grandmother HAD to have the gene but she never developed  cancer but neither my cousins mother. What are my chances? She said 25%. My mom refused testing. She is 72 and has severe COPD. She would not be a good candidate for prevenative treatment. I have already told the breast doctor I would go ahead with the double mascectomy and ovarian removal if I came back positive. Any thougths or feedback. How odd is it that our grandmothers and mothers never had cancer but yet the offspring does. Yes we have 1 aunt that died from it and 3 great aunts but shouldn't this BRCA be more expressive, meaning shouldn't our mothers have this? Our mom's also have other risk factors such as heavy smokers. This coupled with a BRCA gene would mean almost a guarantee that they would develop cancer. I will know February 7th. 

dsmitzy, I too have the BRCA gene & a strong family history

Mom has Stage IV diagnosed in the last couple years. She had a mastectomy in 1986 with chemo & was cancer free. until5 years ago she was diagnosed with rectal ca - went through heck - had a bone scan & they found breast cells on her tailbone....so rectal ca saved or at least prolonger her life. She is currently receiving chemo.

Maternal grandmother had breast ca & her aunts all had breast or ovarian ca

Paternal grandfather had breast cancer.

My mom, uncle & cousin have all tested + for BRCA2

I had my mammogram last week & was called back for more testing (which is typical) as I have dense tissue. Had the diagnostic mammogram (ouch) and an ultrasound. They said I have cysts (not unusual) but one needs to be aspirated......this is a first. She also commented about my milk ducts & I must have had several children & breast fed. Fact is I had one child & did not breast feed as I didn't produce any milk.

Now, of course, I am worried. I get tested every 6 months between MRI's, mammograms & ultrasound and this is the first time they ever mentioned cysts or anything that needs aspiration. I have continued with my OBGYN and never seeked out more specialized care, but now am thinking I should consider MDAnderson.

Just felt the need to vent & release some of my hysteria!!! Sorry for the long post

I am 57 and BRCA2 +..found out about a year and a half ago. I have three Sisters and we all 4 r BRCA2 +, along with my Mom.  My maternal Grandmother died of BC. My Sister, Linda, at age 40 was diagnosed with stage 2 very aggressive BC , which she is a 15 year survior. My Mother was diagnosed with BC two years ago but passed away in Sept. 2012 of a lung disease.  My Sister, Becky, age 53 was diagnosed June 2012 with BC and just finished her Chemo. She had both breast removed a month after she found out she had cancer and has not yet had reconstuction surgery.

In early Oct. 2012, Linda, age 56 had mastectomy with DIEP .. 28 hours of surgery in two days. The Dr. could not get blood flow to one of the flaps, so she ended up with just one breast done. Very disappointing. I can not decide what to do, but I know I need to DO SOMETHING FAST.  I feel like a sitting duck!

I do not think I want the implants or the surgery that Linda had. I`m thinking of maybe just getting the ovaries out now and worry about the rest later. Linda keeps telling me though if I were to decide later to get the mastectomy with DIEP, that any kind of surgery to my stomach might mess up the chance of having DIEP. I just am so confused, I truly don`t know which way to go. 

Also, we all are trying to deal with the death of my 52 year old sister, Karen, who was murdered by her ex in late Oct. 2012, 8 weeks after my Mother`s death...two weeks after Linda`s 28 hour surgery....and Becky was in the middle of her treament of BC.  2012 was not a Good year for our Family...Looking forward to God`s Blesssings in 2013.  

I have been researching a clinic in Miami.  Miami Breast Center, has anyone else heard of it? I would love to know more about this procedure. Maybe talk to someone that had been there and had this done....It sounds so much less invasive that the others. Didn`t mean to post so long...I`m like Dawnie...just needed to vent..but also looking for answers.  

Dsmitzy I was diagnosed with BC in May 2011...I was 41 years old, so it was suggested that I get genetic testing done. I was adopted at birth but was reunited with biological mother & her family in 1999. My biological grandmother died of breast cancer 4 years after I met her. I am BRCA 2+. I also have been a patient at MD Anderson & feel that it is a great place. I've had a double mastectomy, total hysterectomy & I'm almost done with reconstruction. The surgeries weren't east but making the decision was the hardest part for me. Like you I felt healthy & kind of felt like I was mutilating my body. I gathered tons of info & researched until I came to a decision that fit me. I don't regret anything I chose to do & have peace of mind. You have to do what is right for you. I wish you the best & know that MD will take great care of you.