Stories of Reconstruction: Meet Sarah
By Rethink Contributor October 17 2018
Here is Sarah’s story.
My story has to start with my beautiful Aunt Liz who, years ago, courageously fought both breast and ovarian cancer. Through genetic testing, she found out that she carried the BRCA1 mutation (the first person in my family to discover this). She shared her results so we could do our own genetic testing. Unfortunately, my aunt passed away from the ovarian cancer.
My knowledge at the time, in my early 20’s, was that if I, too, carried the mutation, routine screening (yearly mammogram and MRI) would start when I turned 30. So, when I was nearing 30, I asked my father to get tested. He tested positive for the mutation. Next, it was my turn (and my twin sister’s). First, I got my life insurance policy, as recommended (note that a law has since been passed banning insurance companies from penalizing you for genetics). In March 2018, I tested positive. I was terrified. My dad felt guilty.
Instantly, my lifetime risk for breast cancer went up to 87%, and 40% for ovarian. I knew the path for me was to consult for some prophylactic surgical interventions as I couldn’t live my life terrified by these odds. Watching what my aunt went through was awful, and she gave me the opportunity to get ahead, and that was exactly what I had to do. Thankfully my sister tested negative. I’m so glad she doesn’t have to go through this too.
After weighing my options and risks, I decided to move forward with a prophylactic double mastectomy (complete breast removal). I saw the breast surgeon, plastic surgeon, and made plans to have surgery as soon as available.
The Many Tests
I nonchalantly went for my first mammogram (as part of the Ontario Breast Screening Program) on May 10th, thinking nothing of it as I was going to have surgery. Four days later there was a request from the radiologist for more imaging. I panicked. Did they see something? I called friends and family, who tried to assure me it was probably just a cyst. My breasts are young and dense. I tried to believe them.
On June 1st I got a second mammogram and an ultrasound of my left breast. The weeks of waiting and worrying further demonstrated to me that surgery was the best choice for me. I didn’t want to do this every year. I couldn’t. I even sought out anxiety medications as waiting for answers was one of the most stressful parts of the entire process.
I knew they were looking at something. I saw it. On the mammogram. A bright white spot…
I waited and waited (for what seemed like forever) to hear the results. No one was communicating. About a week later, the imaging department called me to book a biopsy. I guess they saw something. The woman who called me was surprised my doctor wasn’t in contact about the results of the previous imaging and could only tell me the radiologist requested a biopsy of two spots in my left breast. I panicked again. I couldn’t get a hold of my GP to discuss it, so my best friend and I went to the hospital (where I work as a nurse) and I signed the release to get my imaging results to read them myself. My heart sank. It didn’t sound good. I now knew it wasn’t a cyst, and it was described with scary terminology and a fairly concerning BIRADS (Breast Imaging Reporting and Data System) score.
On June 14th, I had my biopsy. Two sites, two samples of each. After a night shift on June 21st, my GP called to tell me it was cancer.
I think on the inside, I already knew. My next steps were to go back to the same surgeons, under different circumstances. The choices were no longer mine. I didn’t get cancer before it got me.
I knew a double mastectomy was what I needed and wanted.
My risks were too high; they just had to go. I was devastated by this, even though I knew it was my plan. I was terrified to “mutilate” my breasts like that. I was angry this would rob me of the opportunity to breastfeed my future children. I was afraid of the impact on my femininity and sexuality.
I went to the plastic surgeon’s presentation about all the surgical options, and then I met with her. We chose a skin and nipple sparing double mastectomy with immediate implant reconstruction. We all felt this was my best option. The DIEP flap procedures didn’t feel like the right choice for me, and the surgeon also agreed, worried I may not have enough tissue for that. I was terrified about what the results of a mastectomy would look and feel like. I’m young, single, and I wanted to look as “normal” as possible. And I wanted everything done at once – to go to sleep with boobs and wake up with boobs.
I had the surgery on July 23, 2018. Heading into the OR, with my mom, sister, and besties by my side, we anticipated a four to five-hour surgery. It was seven hours, and luckily went well with no complications. My plastic surgeon is incredible and really took her time. I’m glad she did. She was able to place the implants under the pec muscles and avoid expanders and another surgery.
Recovery was tough; the post-surgical exhaustion was insane. The Jackson-Pratt drains caused a lot of pain and discomfort for the two weeks I had them. I also wasn’t allowed to shower for five and a half weeks, to keep my incisions dry. That was tough. The activity limitations were hard, too. I’m fiercely independent and I needed help. I’m so thankful my sister came home from Australia to be there for me. I am almost 11 weeks post-op, and I’m becoming happier with my results every day.
Aside from some minor tissue necrosis, I’ve healed well. I anticipate some fat grafting in the future, but so far so good. I have no regrets. I still feel like this was the choice for me. I wouldn’t do anything differently.
My advice for others?
Meet all the surgeons. Assess all your options. Talk it out – with surgeons, friends, family. Seek second opinions if you need to. Feel safe and confident in your decision. And don’t forget, it’s all about you. Get what YOU want, what YOU need.
After surgery, my next hurdle was pathology. Three and a half weeks post-surgery, I found out that the cancer was triple negative, stage 2, and as a result I would require chemotherapy. My surgical margins and sentinel lymph node were clear, but because it was triple negative, they wanted chemo – extra insurance that it was gone and wouldn’t return. I was devastated. I was afraid to be sick and crushed to know I’d lose my hair. Yes, it’s vain, and temporary, but I was so attached to my long blonde hair. I’m rocking the bald, but sad for how long it will take to get my long blonde hair back. This is the most external part of the process, and it screams what I’m going through to everyone.
Some of the most difficult aspects of this process have been mental.
I’m 31 and this took me COMPLETELY by surprise, and it all still feels so surreal most of the time. It’s been recommended that I have my ovaries removed in four years. In a way, I want them gone now, because I’m terrified of ovarian cancer.
I can’t believe this is what I’m going through. I can’t believe the drastic surgery I underwent. The chemotherapy I am in the middle of (three of eight sessions complete). I feel anger for the things taken away from me: the control, the options.
And it’s not just about the breast surgery and chemo. I need to worry about my fertility. I underwent egg harvesting pre-chemo, which wasn’t as successful as I hoped. My ovaries “should” work after chemo, fingers crossed. I also need to worry about passing this horrible gene on to my future children. I’m currently single, and I can’t imagine how this is going to affect future relationships.
What I’ve learned
Throughout this process, I have learned that I am a lot stronger than I ever thought I could/would be: Physically, mentally and emotionally. This is a big, tough battle. But I’ve got it. It’s not going to take me down.
Through social media and word of mouth, I have met so many incredible women battling alongside me that provide strength and inspiration when I need it most. Organizations like Rethink provide support and bring us together. I didn’t think I would be so passionate to share my story, but I have found strength from others’ stories, and if mine can provide that for someone else, I’m all in. If my story can inspire change – encourage being breast aware (know your breasts and what they feel like inside and out), a surveillance program at the hospital if you are high risk (those pesky scans that people dodge), and awareness that cancer doesn’t discriminate – then there is another win in this for me.
Follow more of Sarah’s story on Instagram @journey2previve