After I shared my story, so many of you reached out with the kindest, heartfelt words and I truly appreciate every single one. Means so much to me. I wanted to put a post together here sharing more info and some of your great questions and even more info you shared about the mutation and genetics testing. Thank you!
The words in this post that are in quotes were different comments and questions written by you.
It’s also Previvor Day! “In 2000, FORCE coined the term previvor, and it was named by Time magazine as a top 10 buzzword in 2007. Today, we recognize and honor all previvors – survivors of a cancer predisposition who have not had the disease. Our collective voices can help change the fact that 90% of individuals with a genetic mutation predisposing them to hereditary cancer don’t know about their risk. Knowledge is power!”
“Thank you for sharing this! I’m BRCA1+ and I always love to hear how other people handled this. I’ve had my fallopian tubes and one ovary removed. I will have the other removed this year as I’m about to turn 40. Would love a post about any hormone replacement therapy you are doing; that’s what I’m most nervous about!!”
It does take awhile to figure it all out. My doctor started me on a low dose of estrogen, but it wasn’t helping enough. I was having hot flashes, mood swings, you name it. So she upped my dose of Estradiol. I started off with the patch and it wouldn’t stay on, so now I take a pill everyday and haven’t minded it. A few months later I was still having some symptoms and frequent headaches, so she started me on progesterone too. So I take estradiol in the morning and progesterone at night. Have been so happy with these meds and dosage. But again, it’s hard in the beginning to figure it all out. I’ve always been the worst about listening to my body. But with all of this, it’s been a big fat reality check that I need to, to feel the best I can.
“As a genetic counselor who counsels patients about genetic cancer predisposition, I’m so sorry you have to go through this but am so thankful you were empowered to get to decide what steps to take. Congrats on having your surgeries behind you!”
“I was diagnosed with stage 2 breast cancer in 2016 and had to have a double mastectomy. I was 40. Two boys under 10. Thank you for sharing your story, the more we talk, the more women don’t need to live in fear of the what ifs. Cancer shouldn’t define any of us, we are more than that.
“Thank you for your vulnerability in sharing your story. The world needs more of this authenticity. Sorry you are going through this but it’s so important to be proactive and advocate for our own health. Thank you for bringing awareness and educating. My sister fought through breast cancer the past two years and thankfully is doing well, although now is fighting the post-effects. Sending prayers for your healing and health!”
“Hi there! Good morning! I have a question…were you nervous about getting your results? How did you cope?”
I honestly wasn’t nervous at all. I mean yes, I would’ve loved to have been negative. But I guess I was also just so thankful this test even existed, so I could be proactive about prolonging my life after I tested positive. And so thankful for modern medicine. I coped by making appointments as soon as I could and knowing I wanted to have this all behind me, so I wouldn’t have the anxiety of waiting and deciding. But I will say that I did wait until summer was over to have my surgeries. I wanted to live it up in bikinis, swim and enjoy summertime with the family before I would be couch bound for awhile. So I waited until the kids went back to school.
I also wanted to add here that I have a strong faith and knew that the Lord would protect me and guide me through all of this, so I was at peace with it. The power of prayer is a wonderful thing.
“Also important to note, males can carry the gene too. My dad got tested for my sister and I since his mom and sister carried it and had breast cancer.”
“Thank you for sharing!! I also encourage people who have a family history of cancer and tested years ago or had family test years ago to look into retesting! My mom did testing when she was diagnosed in 2006 and tested again in 2013 when some new testing came out. But she was negative both times. My doctor sent me for testing in 2020 and I tested positive for a mutation that is newer to the panels. My mom was also positive for this mutation along with many family members. So don’t write-off testing just because you or a relative were negative in the past! I’m so glad my doctor didn’t!!”
“When I had mine recently they saved all my info in the system so if new research comes in they will contact me now that I’m in the system!”
For those that live in the Charleston area, they’re currently conducting genetics testing for free! Click here for more details.
Hope this info helps explain more. Again, thank you so much for the outpouring of love! Y’all are the best!