On July 4th 1998 I stood on the front porch of my parent’s house in Maysville, KY and cut off my 46 year old mother’s thinning hair. Earlier that year Mom had been diagnosed with stage 3 ovarian cancer. She fought hard for the next 10 years, taking every chemo treatment available until the treatments ran out along with Mom’s time here on earth.
I’m not sure what spurred it on, a nudge from her doctors or just her own curiosity, but Mom started researching our family history of cancer and found that her father’s side of the family was drenched in breast cancer, ovarian cancer and stomach cancer (most likely ovarian as well). Years later her half sister, Sandy, was also diagnosed.
In 2002 Mom underwent BRCA genetic testing to see if our family’s history of cancer was indeed genetic. Mom tested positive for two gene mutations confirming her genetic predisposition to cancer. Because Mom was a carrier of the mutations, there was a 50% chance that my sister and I were also carriers. We were both tested; my big sis got the luck of the draw and tested negative (yaaaay!) while I tested positive for one of Mom’s mutations (booooo!).
I want it to be noted that I don’t hold any negative feelings toward my sister for stealing all the good non-cancer genes. Sure she also stole the ‘I look 15 years younger than I actually am’ genes and the ‘I can multitask like a bad mamma-jamma’ genes, but I’m taller, I don’t sunburn, and eating ice cream has never thrown me into an asthmatic attack so… I call it evens. Besides, we both got the ‘derpy’ genes.
I’m sure you’re thinking, “Afton, all of the Mutants I know have really incredible super powers. Does your mutation give you super strength or the ability to over consume pizza and still fight crime?” Sadly, the answer is no. While my pizza consumption is on the higher end for someone my size I have not acquired any super powers. I guess you could consider me more of a ‘Rogue’, because let’s be honest, her mutation sucks too.
What the BRCA gene mutation DOES give me is:
A 55-65% chance of developing breast cancer by age 70.
A 35-70% chance of developing ovarian cancer by age 70
*Men who carry the mutations are also at a higher risk for breast cancer and prostate cancer.
Guys, I KNOW!! I’m totally being a Debbie Downer,
but I want you to know this stuff because:
A) If your family tree has a crazy amount of breast, ovarian and or prostate cancer, you might have a greater risk, but you are not alone! And there’s something you can do about it. Get tested! Take control of you future.
B) There’s no good screening method for ovarian cancer. By the time most women start experiencing warning signs, if ever, it’s too late in the game.
C) The risk involved for those of us with the BRCA mutation is just too high to ignore. This is why most women with the mutation opt for preventative hysterectomy and double mastectomy. (If you’re thinking to yourself, “Wow. That seems pretty extreme.” You’re right. It is extreme. And I pray that someday this won’t be the norm, but for now these preventative surgeries are the best options the medical community can provide.)
D) I will need your help! Meals, encouragement, support for Josh and the boys, maybe a hair wash. And prayers, lots of prayers.
DD) If I look different (ahem) the next time you see me you’ll know why.
So, here I am, 4 days away from my 36th birthday. In 3 days I have an appointment at the Women’s Oncology Center in St. Louis to schedule my preventative surgeries and discuss my options. I’m not 100% sure what that will look like. I’m not afraid, a bit anxious, but also really ready to start on this journey. If these surgeries will provide me the opportunity to someday sit on the back porch with old man Josh Nordean while we watch our grandkids play in the yard then I’ll take it, all day everyday.
Thanks for reading friends! I covet your love and support. And cheesecake. If you have any cheesecake, I covet that too.
Beautifully written, Afton, and right on. I believe what you’re doing is wise as well as courageous. Praying for you, my friend. Brenda
Just want you to know that we love you. We are standing with you and Josh through this. You have our prayers and you have our hearts. Afton, I am in awe of your courage. You are incredible beyond words. You really are. I am also so proud of you Josh…you are a good man. Comfort in your love is what gives Afton the strength to go boldly and bravely forward. X
Rachel, your encouragement is so appreciated. You always seem to know just what I need to hear. Thanks for your unwavering friendship to our whole family.❤
Sending tons of positive thoughts and prayers your way! Take care!!!
Thanks friend! ❤❤❤
Afton, I’m Mandy and Sarah Lewis’ mom. Remember you from soccer. I Had a double mastectomy in August with expanders put in and just Wednesday had them removed and the implants put in. While it hasn’t been fun, it is totally doable and so worth it to assure BC doesn’t come back and try to kill me. Sorry you have to go thru this at your age but I’m all about being proactive. Living is much more important than being afraid every time you touch your breasts or get a mammogram. My mom had her screenings every December and it seems like we spent every Christmas season scared her C had returned . . . And it did many times. Did not want my girls to have to go thru that.
If I can help in any way or offer any advice on clothing options (drains, yuck!) etc for the short term please ask. I have found a couple of items that have worked perfectly and were great purchases. Using them again after this last (hopefully) surgery also.
I did have a hysterectomy when I was about your age, not because of cancer. It was definitely the easier of the two surgeries . . . I was happy to have that one because I was having problems. And no more periods . . . Ever. . . . A great thing. And it sounds like you have children so that’s a big blessing.
Email me if I can give you any tips or you just want to vent. I bought several things that were kind of a waste but a few that have been really helpful. Will be thinking about you and hoping all goes well,
Hi Debbie, thanks so much for your message. It’s so encouraging to hear ‘success’ stories and know that this is totally doable. I will be emailing you!
I will certainly send cheese cake if there is a way to do so. Let me know where and where. I am so proud of you for taking this journey. Even more proud that you are taking us along. The best way to fight cancer is prevention. I am praying you and will one day be able to enjoy your gr8 grandchildren.
Thinking of you and your family Afton!!
Hey girl! So brave of you to share this journey with us. Good luck with your surgeries and I’d def be sending meals and taking your Littles to the zoo if I lived nearby. ❤ Have you looked into using essential oils to support you through this? Love!
You are too sweet Gwen! I’ve been thinking about getting Progessence. Are there others you’d recommend?
Literally just saw this response! 😳🙄 So sorry!
I so enjoyed your writing style :). Thank you for sharing in such a straightforward way. My good friend just went through the hysterectomy and double mastectomy last year…..she did so well with both. Proud of you and so thankful you’re willing to share your journey with us.
Thank you Abi! I’m so glad to hear your friend is doing well. It’s not the best club to be part of, but there are some pretty spectacular ladies in it. ❤
Love ❤️ and prayers Afton!
If only we gained super powers with our mutations….I’m your BRCA sister from another mister. Loved reading your post. Please feel free to visit my blog, I’m on a similar journey and would love to compare notes with you.
Hey there sister! Thanks for the note. I’ll check out your blog for sure! Are you a part of the BRCA Sisterhood Facebook group? It’s helped me tremendously.
Please do stop by the blog. I’m going to have to join that group for sure. Thank you for the tip.
Love and prayers from our neck of the woods too….your post is beautiful
I’m with you! I don’t have BRCA, but I do have chek2, which leaves me with the same options. I was searching for people like me, and thankfully found you here! Hope things are going well, or as well as they can in this journey.
Hi! Thanks for the comment. I’m glad you found me and I hope all is well with you on your journey. There’s an awesome Facebook group called BRCA Sisterhood that I’m part of and it’s for ppl with CHEK2 as well. You should check it out; it’s been so helpful to me in learning what’s ‘normal’, finding out my options and learning how else to be proactive.
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