The Beginning

           I’ve started this blog for one main reason: I am an information-aholic and (in my opinion) there is not enough information out there in the world about the BRCA genes and the men and women who are effected by mutations of these genes. 

            I found out on December 3^rd, 2013 that I am positive for a BRCA 2 gene mutation.

*Disclaimer- I am not a doctor.  The information I share is from the internet and other sources.* 

*Please do not take my word over a doctor’s or another medical professional’s.*

            To start the story properly some background is necessary.  My paternal grandmother was diagnosed with breast cancer when I was in the 2^nd grade.  She had a single mastectomy and took Tamoxifen for a while after that.  My father’s cousin then died from ovarian cancer during my sophomore year of college.  (She went into the hospital on a Monday with “flu like symptoms”, was in a coma by Wednesday, and died on Thursday… I’ll discuss ovarian cancer in another blog post, and my fear of the “silent killer”).  My father’s other cousin was diagnosed with breast cancer, and is now a survivor!!!  My father’s sister (my aunt) was then diagnosed with breast cancer, and is also a survivor!!!  My paternal grandmother was then again diagnosed with cancer: stomach cancer.  She had her stomach removed, had chemo, and was doing pretty well until the cancer came back and she passed away in November.  While my grandmother was getting weaker, my dad was diagnosed with prostate cancer in September.  He has since had his prostate removed and is doing quite well.  He will be getting radiation this spring and his surgeon is hopeful that this should clear up any potential problems.

            Recap- Breast cancer- grandma, aunt (survivor), second cousin (survivor)

                        Ovarian cancer- second cousin

                        Stomach cancer- grandma (same one that had breast cancer)

                        Prostate cancer- father

            I am not sure when my grandmother’s sister got tested for the BRCA 2 gene mutation, but I believe she was one of the first to be tested.  Everyone that has tested positive for the mutation, except my grandmother’s sister and me, has had cancer.

            So, if it is not obvious, I have had a lot of cancer exposure in my father’s family alone.  Because of this abundance of cancer, a person should think about getting tested for the BRCA 2 gene mutation.  Unless your doctor suggests it, I do not think you should get tested for the BRCA 1 or 2 gene mutation if say your third cousin had breast cancer and that is it.  But if your mother or father, grandparents (either mother’s or father’s side), or aunts, or uncles have had cases of breast cancer, ovarian cancer, or early on-set prostate cancer, you should talk to your doctor about the BRCA gene mutations.  I do not, in any way, want to scare anyone, but I want more people to be aware of the potential risks.

            The test: the BRCA gene mutation test is the easy part.  Your doctor orders the kit from Myriad labs.  You go into the doctors when they get the kit and they take some blood (not that much) and send it back to Myriad.  Then comes the hard part… the wait.  It took about two weeks for Myriad to receive my kit and run my insurance card.  Then it takes roughly ten days for the actual test to run.  Then Myriad mails the results to your doctor and the doctor calls you and asks you to come into the office.  Then comes the moment of truth- either you are positive for a “deleterious mutation” or you’re not.  Even if you get a negative result back, you should still be vigilant in your screenings because even though you did not get that gene from your parent, you did get some of their other genes and cancer can be familial.

            Some numbers- the brochure that came with the positive test result sheet has some important numbers about the chances.

            If you have not had breast cancer or ovarian cancer (which is me):

                                                            Mutation Carrier         General Population

            Breast cancer by age 50                      33-50%                        2%

            Breast cancer by age 70                      56-87%                        8%

            Ovarian cancer by age 70                    27-44%                        <2%

           

            There are other numbers in the brochure, but if you are positive, you will get the brochure and get to see the scary numbers too.  I will admit, I am a worrier (that’s why my dad got tested- the thought being he would be negative and I would not have to worry about it).

            Now, my to-do list.  It says I need to get clinical breast exams twice a year, MRIs once a year, mammograms once a year, and sonograms once a year.  Of course, I googled.  I am lucky enough to live in an area with a lot of medical options.  I am within driving distance of Johns Hopkins Hospital, Mercy Hospital, and Anne Arundel Medical Center, all of which have programs that I could become part of.  So, now I am currently trying to get into one of the programs and find a good “for life” doctor.

            In this blog I want to share my life with my BRCA 2 gene mutation.  I want to talk about my fears, my victories, my experiences, and my information worth sharing.  I also hope to help someone, anyone, just one person, with my blog.  In my googling after my diagnosis, I found a few blogs, a lot of which were somewhat negative.  I want to be the bright light, the beacon of hope for the newly diagnosed or even the person who has had it for over fifty years!

My fear: I will get breast cancer before I have kids and won’t be able to have children.

My victory: I found out about my gene at 25- the age I should start getting tested.

My experiences: Cancer sucks (Obviously, but it is still too much in my life right now).

My information worth sharing: Exercise- the only thing everyone agrees prevents cancer.

My goal before next post: Work out consistently every morning and most afternoons.

          I am not looking for pity.  I am not dying.  BRCA 2 gene mutations are weird!  I have something I am battling, but I don’t actually have cancer.  I am in no way saying that a positive gene diagnosis is harder to deal with than a positive cancer diagnosis.  Also, some have used the word, “previvor”…. I am a regular Dr. Seuss, I make up words all the time, but this word is not my favorite.  I like the term warrior.  I will be vigilant, and I will be screened as often as I need to be.  I do not want “I’m sorry”s, and I do not want “are you scared?!”s.  I was given this because He knew I could handle it. (p.s.- I was religious before my diagnosis, it was not a sudden reach because of it)  I want women to go to their gynecologist.  I want women (and men) to get up and run.  I want you to count your blessings and tell everyone you love them.  I am not great with words, and even worse at telling people about things like this, especially about me.  To people who know me personally (not just through this blog): If this news seems like something I should have told you in person, please understand that this is a weird and awkward thing to tell people.  It is better to know all the stuff that comes with this all at once, rather than a text or call with random flutterings of conversation about it.  So- run, go to the doctor, love each other, and maybe eat a salad instead of those delicious French fries (I know the last one is hard!).

Beauty is nothing without strength.