I didn't know if I would ever write this blog. I have been thinking about this blog for along time, even before Angelina Jolie came out about her BRCA1 diagnosis's, I don't have the same gene that she does but I have on that is very close to hers BRCA2.
Before I get into the facts about BRCA I am going to go back quite a ways on why I decided to get tested and how we found out that our family had the gene (and the shock of the side that had it).
Going back to way before I was even born, my maternal grandma was diagnosed with breast cancer in about 1952. My mom was born in 1954 my grandma passed away 12 years after my mom was born. In Nature Outlook Journal there is a statistic listed that from 1944-54 there was just a 40% chance of survival rate to 5 years. By 2004 that same statistic was up to 85.8%. My mom and her sisters always prayed that they would get passed the age of 52, the age at which their mom passed away. Her cancer went on to spread to her bones. They all got passed this age and had mini little parties. We were always worried about this side of the family.
In January of 2003 my paternal grandma was diagnosed with breast cancer. She has been cancer free from that time forward. My grandma had 2 sisters, 1 was diagnosed with ovarian cancer and died of this at the age of 83. The other sister was diagnosed with breast cancer at 52 and died at 72. We do not know if these sisters had a genetic mutation as they passed away before we started the testing.
My paternal aunt decided that she would like to find out if we do carry the gene. They started the genetic process after seeing these strong indicator of genetic possibility. My grandma was tested and she was found to have a deleterious mutation on the BRCA2. My aunt proceeded to get tested at this point, there was a 50-50 chance that my aunt would have it. My aunt found out that she had this mutation also. My father decided that he would not be getting tested for this mutation, as what he had to change due to age didn't warrant knowing in his mind. I decided that I wanted to have my test done. At this point we didn't know if I would be able to be tested as the link wasn't there for me. The genetic counselor decided that it would be a good thing for me to be tested. I came back positive also (this was July of 2011). At this point we were batting 100%, grandma, my aunt, my father and myself. Grandma's gene's are strong!!!
A maternal aunt of mine went and talked to a genetic counselor and they said that there was a very very small chance that that side of the family having a genetic mutation.
There are many facts and myths out there. I am going to start with some facts and then go into the myths.
Facts:
With BRCA1 or BRCA2 the chance of getting breast cancer is 50%-80% (87%) depending on what statistic that one looks at, general population 7%.
With BRCA1 or BRCA2 the chance of getting ovarian cancer is 27-44%, general population <2%.
If you are male and have the BRCA1 or BRCA2 gene you have a 6% chance of getting breast cancer compared to .05% of general population.
If you are male and have the BRCA1 or BRCA2 gene you have a 20% chance of getting prostate cancer compared to 15% of general population.
If you have BRCA1 or BRCA2 you have a 2-4% chance of getting pancreatic cancer compared to <1% of the general population.
You can not be denied insurance coverage because of the genetic testing. You can not be denied a job for having the genetic testing (thou the United States Armed Forces can deny you).
Myths:
I won't have insurance just because of this test, can't happen Congress has passed this as a law. Fact see above
Breast tissue is only in your breasts (what is in front). Fact: Breast tissues goes all around to the back of the body, these are hard places to find tumors if they start there.
What can be done?
In this section I will talk about what I am doing about my positive diagnosis. I will also talk about what can be done.
I have decided to NOT get a mastectomy at this time due to using other surveillance methods. The mastectomy would reduce my chance by about 90% but as with the fact that breast tissues goes a lot farther than can be removed with a mastectomy.
I have decided to NOT have an oophorectomy (a hysterectomy along with my ovaries) at this time due to wanting to have children. I will most likely have this completed in the next 10 years if not 15 years.
I have also decided to NOT go on any drugs to reduce my risk, drugs such as tamoxifen, my grandma took something like this for a total of 7 years, 2 year of it was tamoxifen and 5 years of another drug after her breast cancer to help keep it in remission.
I have decided that I will get semi annual testing, for myself in February I get a breast MRI, this is due to the density of young breasts. In August I get my annual mammogram. I have twice had to go back in for more testing, I am thankful that I have never had to have biopsy but I have had to have ultrasounds. At my yearly female exam they do an ultra sound to check my ovaries, if anything would come back abnormal there we would get another ultrasound in 6 weeks. At the age of 30 I will also start getting a blood test to check for ovarian cancer.
Please ask any questions that you have! Also please feel free to share this!
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