Wednesday, September 26, 2012

National Previvor Day-My Story

September 26 is National Previvor happens to fall on the week that span September, national Ovarian Cancer Awareness Month, and October, national Breast Cancer Awareness Month.

Both of these cancers have touched my family over the last few years....and PRAISE GOD for His healing and care for my mom, my aunt and my grandmother, as they are all beating it. One member of my family was not so fortunate, and died from metastasized breast cancer when I was 16. My dear Aunt Noela was not even 40 years old. But that was 16 years ago now, and cancer research and treatments have come leaps and bounds in the last 16 years.

One of those advances is with genetic research in female cancers. Physicians long theorized that breast cancers might be genetically linked, but they weren't sure how. {SIDE NOTE: Know your family history! On both sides of your family! It's important!!} But now, they have pinpointed genes, that when a mutation occurs, increased a woman's chances of developing ovarian and/or breast cancers. They are called the BRACA 1 and 2 genes.

Part of my mom's diagnosis a year ago for breast cancer included genetic testing, particularly when her surgeon found out that my mom's sister died from breast cancer and another sister was in the middle of battling ovarian/Fallopian tube cancer. So along with the news last September that she found out she had breast cancer, mom was also told that she was "BRACA positive", meaning that she has that gene mutation.

We were devastated, of course. Especially since the family's energy had been focused the last 18 months or so on my aunt battling ovarian cancer. But my mom is a SUPER positive and energetic person (if you know her, you are laughing right now) and that certainly helped buoy everyone. But after the surgeries, there's still that BRACA gene mutation to deal with.

With mom's positive BRACA, that sent all the women in the family off to be tested. We can't be sure, but the doctor's think that my aunt who passed away 16 years ago was probably positive, particularly since she was so young with a cancer diagnosis. My aunt who just battled ovarian cancer is positive. My mom's mother is positive. Thankfully, their other sister, the youngest of the sisters, is negative.

I'm the oldest of 4; two girls and two boys; my sister is the youngest, with the brothers in between. We ALL had to be tested, even the boys. {While men DO develop breast cancer, even with a positive BRACA mutation, the risk apparently isn't that much higher. A positive BRACA male's risk is in passing that to his children.} Turns out, the youngest, Jacob and Abby, are negative {so they fall into the "normal" risk categories for breast/ovarian cancers}. The other brother, Noel, and I, are both positive.

{So are you keeping count here? It's confusing. BRACA positive family members: my mom, her mom, her sister, my brother, and myself. I think my mom's cousin and my grandmother's sister were tested too, but I don't know their outcomes}

So getting back to the Previvor Day. "Previvor" is a new-ish term, meaning someone who has the knowledge {eg-BRACA results} to "outwit" cancer, so as to not have to be a survivor. Lord willing, this means that with proper screening,  testing, and other preventative measures, I will not have to one day tell my family the dreaded words of "I have cancer". Knowledge is power, as the saying goes, and I now have extra knowledge to deal with my risk of cancer.

I was really upset about my BRACA positive diagnosis. And all kinds of unexpected feelings and thoughts went through me. {"I'm a genetic freak!"} Definitely, fear is the over-arching feeling. Trusting the Lord in this is hard. {"Why would He create me like this?"} Feeling alone and isolated. Doubts about having children are lurking. {"Do I even want to knowingly pass this gene mutation on to kids?"}My typical reaction to conflict or bad/hard situations is an ostrich-response: stick my head in the sand, and it will go away. Pretend that it's not there. Avoidance. {It took me 9 months after mom's diagnosis to eve go get my genetic testing.}

 So, you may be wondering what to do with this knowledge of a positive BRACA mutation. Well, for now, I'll be having mammograms, breast MRIs, pelvic ultrasounds, and blood tests....every six months. They will monitor everything (breasts and ovaries) very closely to track changes. Honestly, it's going to be exhausting. But not as exhausting as chemotherapy would be. {AND I happen to work at my OBGYN. What a blessing is that?? Super convenient!}So, IF something changes, the docs can catch it super early. Eventually, I have no doubt that I'll have prophylactic mastectomies and a hysterectomy. As to WHEN to do that, Scott and I are still thinking and praying. Obviously, we haven't had children yet, so that's a major factor.

I am also making lifestyle changes, as has been hinted at on Facebook. Being overweight and inactive increases risk for cancer, and plenty of other modern diseases. {And heart diseases and diabetes "run in the family" too...that could do me in before a cancer does!!} I'm exploring a Paleo/primal lifestyle to make dietary changes. Avoiding all processed foods, cutting WAY back on gluten (because it has been shown to be inflammatory, even without a celiac disease) and carbohydrates in general, cutting sugar, and focusing on high-quality proteins and plenty of veggies and some fruit. I'm trying to at least go walking everyday, and do short strength workouts.

Even if I cannot change my genes, I can help my body do what it can in reacting to my genetic makeup. And a healthier lifestyle never hurt anyone, right??

So, back to today: National Previvor Day. Some of y'all who know me IRL may be shocked or whatever by this post. I haven't told many people at all, even though I've known my BRACA results since July. I'm sorry if you ARE finding out this way...I just honestly have been dealing with how to tell people. So, I figured this was as good a day as any! {I live a "social media life", but somehow, this wasn't something that one tweets out immediately. And I don't blog very often anymore, but writing about this helps, I think.}

What I want to do on this Previvor Day, is to encourage others (women AND men) to:

  • Know your family histories! Ask about even your father's side...I met a girl in her 30's who's BRACA mutation came form her dad's side of the family! If you discover more than one family member who's had a female cancer, ask your doc about genetic testing!
  • Do your hear about it all the time, so just do it.
  • Do your yearly check ups at the doctor. It's not fun or enjoyable, I know, but it could very well save your life. Mom's breast cancer was caught by mammogram at a really early stage. She still had to do chemo, but not as much or as long, because it was early staged.
  • Almost all of us could make positive changes for a healthier lifestyle. So take and honest look at yours...cut out processed foods, cut out fried foods or start taking a walk everyday. {This is a daily struggle to overcome 32 years of poor eating habits and a loathing for exercise, so I'm mostly talking to myself here folks}
Psalm 139:13-16
For You formed my inward parts; You knitted me together in my mother's womb.
I will praise You, for I am fearfully and wonderfully made.
Wonderful are Your works; my soul knows it very well. 
My frame was not hidden from You, when I was being made in secret, intricately woven in the depths of the earth.
Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. 

Questions? Just ask me!


Greta said...

Ann Marie, I think you're really brave! It would be SO difficult to go get that testing and potentially feel like you have cancer looming over you. It's even more difficult, like you said, to change patterns of not the best/unhealthy eating and implement good exercise habits. It helps to look at it like you have some control over how your body behaves though. Way to go!

Heather Joy said...

Proud of you, Ree, for fighting it and not letting it take over you. And praise Jesus that He is before all things and in Him all things hold together. -Col 1:17 He knows your body and wants our bodies to glorify Him. You are loved. Keep it up!

Rachel said...

Wow, Ann Marie - thank you for sharing! I am very in awe of your bravery to get tested - I'm not sure that I could have. But knowledge is certainly power in this case, and if it ever comes to it in my own family, I will get tested too, now that I understand! Thank you for the perspective.

Cameron VSJ said...


I have a quick question about your blog, would you mind emailing me when you get a chance?