Hello everyone! My name is Stacie, I’m 34 years old, I’m BRCA2+ and currently fighting Stage3a Triple Negative Breast Cancer. I live in Buffalo, NY with my new husband (we just got married 12/8/2018), our kids & our dogs! I’m a RN & esthetician & currently running my own little eyebrow & lash studio.
I want to say my story started on 3/28/2019 when my biopsy confirmed cancer, but truthfully it really started in 2009 when I tested positive for the genetic mutation, BRCA2. I had know my grandmother got breast cancer at a very young age (33) and lived only into early 40s, & my mother had just been diagnosed with Stage2 (triple negative & HER2+) & tested positive for BRCA2, this is when my sister & I were told we needed to test for the mutation as well. I tested positive, my sister tested negative. I was 25 at the time. I did one consult for a prophylactic mastectomy at that time but the surgeon suggested waiting until 30 and reconsidering. At this time the gene was still really just being learned about & prophylactic mastectomies were not done nearly as often as now. So I opted to do surveillance which was a mammo/MRI every 6 months plus monitoring ovaries. I was very good with my monitoring. Despite knowing my risk I still really never felt it could happen to me. That quickly changed in March of 2019!
I was overdue for my annual MRI come March 2019. I was due in November 2018 (last mammo was May 2018) but I was preoccupied with my December wedding & brushed off my regular scans, regretfully. We got married in early December & went Thailand until Christmas Day. By time life seemed to get back to normal it was already March and I knew I needed to be seen. I often felt my breast & had no reason to believe anything was wrong. As the PA was doing my breast exam she kept pushing into one spot, I knew something seemed funny, but I had long time breast implants & sometimes it warranted extra time. Finally the PA asked me if I’d ever felt this “lump” before & my heart sank, I already knew it was cancer, and I was so mad at myself for putting off my scans & thinking “how didn’t I feel this?!” My tumor was flat & laid flat on my implant, it was not a typical round tumor which is likely why I did not feel it on my own. We did a mammogram & ultra sound that day both confirmed suspicion & biopsy was set up for 4 days later. I went in for my biopsy on a Monday & I got the call on Wednesday to come in for results (office rules are no results given over the phone despite my husband calling trying to get results sooner lol!) & was told I’d be seeing the surgeon, which confirmed my suspicion it was cancer.
That night was very rough. I cried a lot. The next morning my mom & husband both went with me for results. I have never felt anxiety like I did that morning waiting for the dr to come in. It seemed like I waited forever. She finally came in and sat and very calmly told me I had DCIS (ductal carcinoma in-situ) & being a nurse I already knew this was best case scenario with cancer (because it meant it had not spread yet) & I think I almost laughed out loud when she said it out of pure relief it wasn’t anything more. She said due to gene & family history I’d need a non nipple sparing double mastectomy and that it didn’t seem like I’d even need chemo if nothing else popped up! I was so so happy. I went for my scans which showed no indication that the cancer had spread so we scheduled surgery first then I’d see an oncologist to determine if I’d need further treatment based on surgical pathology. My opening party for my lash & brow studio was set up for the day after my diagnosis, still being a newly wed & with my initial diagnosis being in-situ I was really on cloud 9 still!
My surgery wasn’t scheduled until 7 weeks later. As time went on I kept getting this suspicious feeling something wasn’t right. Toward the last few weeks before surgery I kept telling my family & even my dr that I thought it was spreading to my lymph nodes because I could feel it. I did mention this to my dr but she didn’t seem concerned, as I was told what I was feeling was from the biopsy (& that you can’t feel cancer spreading but I swear I could so please please please listen to your body…I wish I did!) but I knew it wasn’t. Although they were incredibly understanding, my family grew tired of hearing me obsess about something not being right despite my scans showing the cancer hasn’t spread. I had been known to be a little dramatic in the past so they kinda just thought I was being my typical dramatic self. It was frustrating to me that I felt no one was truly listening my concerns. My friends & my husband threw me a little pre-treatment party & we all wore pink & it was really just a nice time & so thoughtful of them! I’m thankful for them as it helped me feel normal for a night!
So, fast forward to waking up from my double mastectomy…ALL of my lymph nodes on my cancer side had been removed. This was not the plan UNLESS the cancer had spread. I had expanders placed at this time as well. My suspicions were right and cancer was found in my lymph nodes & I would not know my pathology until 2 weeks post op. I had 3 JP drains & one incision across each breast where my nippples were & one incision under each arm. I was surprised how quickly I was able to physically recover from the surgery. The drains were definitely the worst part! Mentally, I was not well because I had to wait on the pathology & at this point I was worried I was stage 4.
I went in for pathology & was told 2 lymph nodes tested positive (I was so relieved only 2!) & that the cancer was triple negative. Triple negative Breast cancer is particularly aggressive, uncommon,& does not currently have a targeted treatment…ouch. In addition to it being TNBC & due to my age & genetics I’d need to be treated aggressively. A few days later I met my oncologist who gave final diagnosis of Stage 3a TNBC & within a week from meeting him (just shy of 4 weeks post op) I had my port placed and started chemo. Biopsies only capture a small portion of the big picture & unfortunately in my situation it didn’t capture my full situation. I was also told due to the flat & odd shape of my tumor & how it laid on implant I just unfortunately had an uncommon situation. Talk about turn of events!
My treatment plan: 20 rounds of chemo -4 AC then 16 taxol with carboplatin every 3rd infusion. Carboplatin is a chemo drug that is being used in clinical trials & showing promise for reducing reoccurrence for patients with gene & TNBC (I believe it’s for both but I could be mistaken) but it is hard on blood counts. I will then have 30 rounds of radiation to my chest wall & under arm followed by surgery to finish up my reconstruction.
I’ve always had LONG hair, I knew losing it would be tough (my oncologist didn’t seem keen on cold capping with my type of cancer and losing my hair really didn’t seem so important anymore). I decided to cut it into a short bob (something I’d never usually do) which I actually loved! Before my second infusion I started to lose my hair so we decided to have a head shaving party. It actually wasn’t much of a party it was mostly just my husbands friends agreeing to let me shave their head & even their eyebrows! Then my husband shaved mine last. We did it live on Facebook and ended up with over 3k views. It was actually a good time and I’m glad I did it that way. I hope I was able to somehow inspire other women, or just even one woman would be enough to make it all worth it. I don’t really ever go around bald, I still struggle with it so I usually wear one of my wigs with a baseball cap. It’s been fun trying new color hair but I’m usually too exhausted to get out and do much. I’m currently on chemo number 7 & I have been delayed 2 days total due to having critically low white blood counts & being neutropenic. I’m hopeful due to my age & being generally healthy we will be able to get through the entire treatment as planned.
As far as my prognosis goes, if all treatment is completed & nothing new pops up I have 22% chance of it returning within 3 years. After 3 years the rate drops to around 11%. After ten years I’ll be cured. I keep telling myself that I have almost 80% of it NOT coming back. I eat healthy & am much more aware of what goes into my body. And even if it does my oncologist said TNBC is currently being studied the most out of all types of breast cancer right now due to lack of targeted treatments & aggressiveness so hopefully if it does return there is something new in the works! I recently had a scan show a non specific lymph node in my abdomen which usually in non cancer patients wouldn’t be a concern, but with my diagnosis it’s recommended to do a follow up scan in 6 months. I’d be lying if I said I wasn’t scared but for now I’m just trying to enjoy the days I feel good with my hubby, kids, family & friends. I feel like I have learned so much about life in these last few months than I have in my previous 34 years! The kindness & love that I’ve been shown throughout this, from family, friends & even strangers, is heartwarming. My husband has been my lifesaver and I couldn’t get through this without him (although it does get hard at times facing something so stressful & scary!). My son insisted on coloring his hair pink to show his support (he’s 12)& our dogs tails are pet friendly dyed pink too! This is something I never thought I would be able to get through but I’m proving to myself that I’m stronger than I ever imagined.
I learned a very hard lesson about putting things off when it comes to my health. Maybe if I went for my MRI when I was due things could’ve been different & maybe not have spread. On the other hand maybe it would’ve been too small to show up yet…I’ll never know! But I refuse to dwell on it and only move forward being more of an advocate for myself & not being scared to speak up if I feel something isn’t right. I feel very involved in my chemo treatment plan as well as my reconstruction & that makes me feel much more confident & secure in my path!
Triple negative BC is being found more & more in young premenopausal women under 40 & in African American women. When combined with a premenopausal diagnosis & the BRCA gene it tends to be extremely aggressive. I encourage any woman who has the gene to explore prophylactic options. My reconstruction really looks incredible so far (as it is understandable that physical appearance of breast at a young age is of concern) & the surgery is becoming more common with more advanced techniques coming out!
I have found support groups on social media to particularly helpful, especially those for younger women & talking to other survivors have helped so much too! And that is exactly why I’m sharing my story with all of you!