Here is my story:
I was 11 years old; I can remember like it was yesterday when my mom & I were doing yard work & she had a sudden sharp pain in her breast. My mom was 40 yrs. old, exactly one year younger than I am now, 2 weeks later she was diagnosed with breast cancer & immediately had a double mastectomy (both breasts removed). My mom's surgery was successful, a survivor, no chemo, no radiation, she is by far the strongest women I know. Mom's breast cancer diagnosis came only 4 short years after my father was killed. For many years I've wondered how in the heck did she keep it together??? A single mother with a 14 year old son & 11 year old daughter??? She has always told me, "You just do what you have to do baby, for your children, my only concern was that I wanted to live for you & Lee".
"My unbelievably strong momma"
My mom, daughter Victoria & I.
I have been getting mammograms every year since the age of 21 because of my strong family history of breast cancer & have had my own share of cysts, lumps, lumpectomies, biopsies, etc. However; for 30 years now I have been going with my mom every 5 years for her check up to make sure she has no signs of re occurrence. This year, I decided to bring my mom to a new doctor that specializes in breast cancer due to the fact that she does much more extensive testing than my moms regular gyn. In addition, after researching the BRAC1 & BRAC2 gene for breast & ovarian cancer for the past 3 years, I let the receptionist know I also wanted a consult with the genetic counselor to discuss having my mother tested for the BRAC analysis cancer gene. I knew that just because my mom had breast cancer did not mean she carries the gene, I knew that if my mom was negative, I was negative & my children were negative, I knew the test cost $3700 & I was more than ready to fork over the money.
My mom was tested a little over a month ago from today, I waited 16 VERY stressful days for the results. I finally received the phone call from the breast specialist; she said, "Cindy, I'm sorry to tell you that your mother is positive for the BRAC1 genetic gene for breast & ovarian cancer, we need to see her back in the office ASAP, she needs to see a oncologist, she needs a hysterectomy ASAP & most important, we need you to be here at 9am to be tested yourself". All I heard at the time was, "your mother is positive", my immediate thoughts were, NOOOOOOOOO, not my mom, my life, my best friend, my everything, how am I going to tell her????? She's been through so much, another surgery at the age of 69??? When will this end for my sweet mom?????
After taking a few hours to compose myself, I called my mom & said; "Mom, the doctor called & they just got your test results back", she said "and...", I said "the results show you are positive for the BRAC1 gene", she said, "so now what"? I said you need to have a total hysterectomy". She said; "OK Cindy Lynn, what ever I need to do to live longer for you, Lee, & my grand kids".
"My brother & I, oh soooooo different, but love him to death".
My mom's reason for living".
My mom's "other 6 reasons for living".
My brothers 3 children on the left & my 3 on the right.
MY THOUGHTS......I thought I was a strong women, she is one thousand times stronger than me! Seriously? She's like super women, nothing will take her down! Two months shy of 70 years old....same thoughts she had at the age of 40. WOW!
The next morning I arrived at the breast surgeons office a 9:00am sharp with my side kick, my ever so supportive AMAZING man by my side, my other best friend, my love, Alan. I barely had to ask any questions because he asked a million, LOL :-). I did the test, was told my results would be back in 10-14 days, & left with only one thing on my mind. Please GOD, let me be negative so my children will be spared the worries my mom & I have lived with for so long.
Alan & I
Exactly 7 days later, I received "the call", "Cindy, I'm sorry to have to tell you that you are positive for BRAC1". My heart dropped as all I could think about was my babies, not my babies. As a mother, you never want your children to worry, this was a hard pill to swallow. The nurse continued to say; we need you back in the office, you need more extensive C-125 blood work & testing, a MRI, a breast MRI, we are going to set you up with a neurologist, a few plastic surgeons, a oncologist, a GYN oncologist, a genetic counselor, you will need a Double Mastectomy & Oophorectomy within the next 2-3 months.
I feel really bad now, but all I could say at the time was "what the hell, please slow down... I don't even know what the heck some of this means"? Again, the main thing still stuck in mind my were my children, although I did hear the words "DOUBLE MASTECTOMY" loud & clear!
Next, the immediate thoughts came to mind....do I tell anyone or keep this a secret? I have thought back and realized that my mom was 40 when she had breast cancer, I am 41, My brother was 14, My Son Dean is 14, I was 11, my twins Kane & Victoria are 10. Crazy...crazy...crazy...., its either a "trend" or I am SO MY MOTHERS CHILD!!! I knew I had to tell my close family members in case they need to be tested. Will people support me with whichever decision I make? Does it really matter who supports me as long as I have my mom, children, close family & a the handful of TRUE friends by my side? Suddenly, a strong feeling of peace came over me & from that moment on, I've been on a mission, which is the reason for me starting this blog.
BRCA raises the risk of breast & nipple cancer - based on the particular mutation I have, it put my risk of breast cancer between the ages of 25 & 50 in the high 90% range. (While preventative mastectomy may not reduce the risk to 0, it makes it pretty close; approx. 1%). But it is also that the cancers to which BRCA 1 woman are susceptible are more often estrogen-receptor negative (so tamoxifen, or other drugs that block estrogen production, aren't a solution), they more often occur to women at younger ages, and they can be more aggressive and difficult to treat. The ovarian cancer risk is somewhat lower - but it's still high, maybe 20 to 40% and ovarian cancer is much harder to detect because you have no symptoms and therefore often more advanced when it is found.
MY MISSION is to spread awareness about this deadly gene to not only my friends, extended family, co-workers, neighbors, etc., but to the entire world if I can. I DO NOT want or need sympathy in any way shape or form. If you chose to have negative comments about the journey I am about to take, please feel free to delete me & not read my blogs. You will not hurt my feelings in any way what so ever! I am OK with what lies ahead of me, I am STRONG, like my mother & I am ready to beat cancer before it has a chance to beat me!!! I'm simply asking for those of you who read my blog to please share it with as many people as you can. I am convinced that all of you (that are willing to help me) & I together can save many lives if the unknown answers to many women (and men's) questions about having this genetic gene are answered here on my blog.
Here is the message I am determined to get out to others who have a strong family history of any of the following cancers. Breast, nipple, ovarian, cervical, uterine (in women) & prostrate, colon, & testicle cancer (in men).
#1 - If you, your mother, or anyone else that you know, has had any of the cancers listed above & 2 other 1st or 2nd line family members, your genetic $3700 testing is covered 100%. All you have to pay is your co-pay of $25 or what ever your doctors visit co-pay is.
For example: If your mother had one of these cancers & 2 more on either HER mother or fathers side did as well, your mothers test, (if still living) is covered at 100%.
#2 - In my case, since my mother was positive for BRAC1, I had a 50/50 chance of being positive & my test was covered 100%.
#3 - Again, in my case, since I am now been diagnosed with BRAC1, it is a FEDERAL LAW that whatever surgery I choose is covered at 100%, whether it be a double mastectomy with reconstruction & a Oophorectomy.
To me this is a no brainer, however; I meet with my breast surgeon & genetic counselor this upcoming Monday & this is where my journey will begin. As my mom would say, "I will do whatever it takes to live longer for my kids".
PLEASE, PLEASE, PLEASE feel free to share my page to as many people as you know to help me spread awareness about the testing procedures for BRAC1 & BRAC2 genetic cancer gene. Together, I'm hoping we can see how many lives we can save!!!!
Thanks to all for reading & hopefully sharing,
Cindy,
XOXO
P.S. Please say a prayer for my sweet mom.
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