The following is a guest post I wrote for my sweet friend Kari over at Life Kari Style
Instead of rewriting it, I cheated and copy/pasted it. Except I wrote it, so I guess it’s not exactly cheating.
Why do you ask questions to which you already know the answer?
Charles Xavier. Though a fictional character, his words rang ever so true to me in April of last year. That’s when I decided to have genetic testing to see if I had a breast cancer gene mutation (BRCA). I knew what the results would be.
My mom has had breast cancer twice, once in 1994 with a lumpectomy and full treatment (chemotherapy and radiation), and once in 2013/14 with only radiation. After the second time, her doctor suggested she have the genetic testing done, but for our (my sister and me) benefit, not hers per say. That would give us some information that we could then choose to do something, if we wanted.
San Antonio with my mom and younger sister
(l to r: mom, me, my sister) A few years before I had my first child
At the time my mom had her testing done, I had just had my second baby and our family was living with my folks while I worked as a travel therapist in Texas. I didn’t even give my mom’s mutation a second thought. I was too busy working and helping my husband raise our young family.
Fast forward to last spring (2017), I was wrapping up training for my first ultramarathon, a 50K. I realized it had been a solid three years since my last full physical and the last one was with my midwife, after my daughter was born. So, I went to a local gynecologist recommended to me by my endocrinologist, and friend. I had a few concerns about my hormones and monthly cycles and actually went in to ask about a hysterectomy. Well, when you say that word to any doctor, and you’re under the age of 75, they start telling you about all the stuff we “should” do instead (i.e. blood work, ultrasounds, monitoring things, etc.). Why can men have a vasectomy with few questions asked, but a woman can’t choose to have an unnecessary organ removed from her own body?!
Anyway, I’d mentioned to the doctor that I rememberedmy mom having one of the BRCA mutations but I didn’t know which one. To which the doctor replied, “You really should find out which one. And then you should decide if you want testing too.” I already knew I would get tested as I’d begun researching the risks of breast cancer and how genetics play a larger role than heredity. However, not only did my mom have a history that started in her early 40s, her mom had a history of breast cancer when she was in her early 30s. So I figured I had dodged a bullet by being super active and I was still breastfeeding my daughter (3.5 years old at the time). Needless to say, when my mom faxed over her test results and I gave them to my doctor, I had to make a decision…get tested or keep hoping I’d be fine.
I was tested the third week of April and my results were ready by May 8. The doctor has you come in for those types of results, to discuss everything, either way. So I went in the following day and found out the answer I already knew: I, too, was BRCA1 positive. This, along with my family history, meant my breast cancer risk was 87%. I’m also hat a higher risk for ovarian cancer. However because I’ve got no family history of that, we decided to wait on that decision.
Now I had to decide what to do. There are basically three options when you have a BRCA mutation.
1) Semiannual imaging (mammograms alternating with MRIs) and hope they don’t find something twice a year.
2) Take tamoxifen, a cancer drug, for 20-30 years and deal with side effects like…
• Hair loss, although uncommon and is usually mild
• Hot flashes
• Vaginal discharge
3) A preventative double mastectomy with or without reconstruction.
I already knew my choice. I knew, before I’d gotten the results, that I’d be choosing number three. There was no way I was going to put myself through the anxiety of possibly finding something every 6 months, or dealing with the side effects of an actual cancer drug.
I also knew that I was not going to put my kids through me having to go through cancer treatments and then have surgery anyway. I wanted to be around for them. So, as soon as I left the doctor’s office, I marched my pretty little DDDs to the office at the end of the plaza, to the surgeon she recommended. I had a consultation set up. Between May 8 and my surgery on September 7, I’d had a pelvic ultrasound, my first mammogram and breast ultrasound (because I had denser tissue), my first breast MRI, and numerous surgeon and plastic surgeon appointments.
Kari asked me a few things and I want to make sure I answer them here too.
What are some things you want women to know about the genetic markers or breast cancer in general? Everyone, yes EVERYONE, carries the BRCA genes. However, not everyone has a mutation. If you have a family member with a mutation, it does not mean you will have it too. (Note: mutations can happen in any generation.) If you want to get tested, talk to your doctor or a genetic counselor.
The mutation doesn’t discriminate based on whether you are male or female either. My general surgeon (see below) has the same mutation and will be having a mastectomy in the near future as well.
Breast cancer is not so much dependent on your family history as much as the genetic component. However, your family history will make your risk (if you have the mutation) higher if there are direct members with cancer (ie mom, grandma, dad, grandad). When you get results, there’s an actual risk range they discuss with you and it’s different for everyone.
Day after surgery. Best surgeon ever!
How has the mastectomy changed your life or what hasn’t changed that you thought might? There’s no going back to what I once knew as “normal.” There’s a new normal now and I’m still adjusting to it. I opted for a reduction as well as the reconstruction. So, I figured all my clothes would fit better…wrong! That’s been a huge, albeit superficial, thing to adjust to. The whole process made me realize that my breasts don’t make me, I make me. And that what I want my children to see. The mastectomy has also opened the doors for so many great conversations with women who’ve had the same thing or have contemplated the testing.
Date night, two months post op, and first dress I purchased with my new measurements in mind.
And not that I thought it would change, but the love my husband has shown throughout the past 6 months has been amazing.
What can friends or loved ones do to best support someone in a similar situation? On the flip side, what are some things they may want to not do. Lol. Don’t ask if we want or need meals after surgery…just bring them. Everyone needs to eat. Haha
Be a listening ear and go to appointments if you can. Doctors throw a LOT of information at patients and even if you write stuff down, you still forget.
Once the initial post-operative healing is over, that’s when real healing begins. Please continue to ask how your friend is doing.
Do NOT call it a boob job. It’s not a lift, or an augmentation. It is reconstructive surgery. I have nothing left to augment after the removal of all breast tissue.
Don’t assume a person has cancer if they are choosing this route. And do NOT ask if they considered other options before deciding on a surgery.
Lastly, the only person who can crack jokes about my foobs (fake boobs) is me. You can laugh, but don’t make a joke at my expense. I’m still grieving and humor is a great coping mechanism.
I’m quite open about my experience, if you see me in person, and more random fellow mutants have seen my breasts than even my family. I am happy to answer any questions you have or will steer you towards someone who might answer it better.
Lastly, my journey is far from over. The final step in the mastectomy healing will be tattoos. As I opted to not keep my nipples (a tiny cancer risk I wasn’t willing to take), I figured that if I’m going to have tattoos (many opt for amazing 3D nipple tattoos) they’d be epic. So 1-2 years post op, I’ll be getting a killer chest piece to cover my tattoos. **If you have a great tattoo artist you’d like to recommend, let me know!**
As for procedures, I will be having a complete hysterectomy this summer. That will be the last surgery (Lord willing), with regards to the BRCA1 stuff. I’ll always do self exams on my chest, and follow recommendations from my doctors for skin checks and such, but now I won’t have to worry about whether I’ll become another statistic in the fight against breast cancer. I’ve already beat it!!
Recent trip to Gatlinburg, by myself, to renew and recharge.
You can find me on social media. I use them to document my fitness/wellness journey. I tend to share more on Instagram but have a running page on Facebook as well. I would LOVE to have you follow my journey.
FB: Will Run For Sweet Tea