STAGE AT DIAGNOSIS: 1A
ER DIAGNOSIS: Negative
PR DIAGNOSIS: Negative
HER2 DIAGNOSIS: Low (But it was considered Triple Negative at Diagnosis)
In Her Own Words…
My name is Rori and I currently live in Commack, NY with my amazing husband and 2 Frenchie furbabies. I’m 35 years old, an avid athlete, and just recently finished my battle with breast cancer on Thanksgiving weekend of 2021.
When I found my lump, I chalked it up to being another cyst that would just go away with my cycle. I’ve been getting mammograms since 2016 & wasn’t really phased by it since I was told I had “very dense, cystic breasts that would come and go with my cycle”. However, my period came & went but the lump stayed put.
Being at the height of the COVID pandemic, I wasn’t sure if my gynecologist would be able to see me in person, but I called and got an appointment with them immediately. They of course told me it probably wasn’t anything to worry about, but sent me for imaging anyway.
After an uncomfortable mammogram, ultrasound, and biopsy, I was confirmed to have Stage 1 Triple Negative Breast Cancer. My tumor was approximately 1.4 cm big localized only to the left breast.
I remember laughing when my doctor called me to tell me I had cancer. I couldn’t help it, for years I had been saying to I wanted a preventative mastectomy. Having a very long line of family members with various cancers especially breast, I wanted to do everything I could to ensure I’d never have to go through what they went through.
Unfortunately, I didn’t meet the criteria set forth by my insurance company (at that time), and I didn’t have the funds to complete this wish out of pocket. So now here I am, living out literally my worst nightmare.
If it weren’t for me knowing my own body & doing regular self-exams, who knows where I would be right now.
Immediately I was sent for egg harvesting & was lucky enough to freeze 1 little embryo. After that, it was onto 8 dose dense chemo treatments (AC-T).
During my AC treatment I was hospitalized once for severe dehydration which eventually lead them to find a Chiari Malformation I during my brain MRI. I remember looking at my husband and seeing black begin to creep into my line of sight slowly. I kept fighting it off not wanting to go to the ER during COVID, but when I could barely stand or keep my eyes open without the room spinning, I knew I had no choice. I also had a huge spike in my liver enzymes during my Taxol treatment hat caused me to push back treatment by a week.
I finally finished chemo on January 6th, 2021… 3 days before my 34th birthday.
During my infusions, I was still able to work out which both my doctor and myself agree helped keep a majority of the chemo side effects at bay. This helped catapult my determination to ensure other women understand that being active during treatment, will severely help them in their own fight.
I decided that after my surgery while I recover, I would go back to school (virtually) to get my certification in personal training.
On February 2nd, 2021 I went in for my double mastectomy with reconstruction. During surgery, my initial pathology came back clear with no lymph node involvement. When the full pathology returned a week later, it showed microscopic traces of cancer in 1 of the tested nodes. This meant I would have to go back for a 2nd surgery to remove the remaining lymph nodes.
I had to really advocate for myself when it came to going back for an Axillary Lymph Node Surgery. I knew the repercussions of this meant I’d be at an increased risk for lymphedema. Since I’m left-handed and was left-side affected I could not afford to have a flare-up and be struggling to find someone. I wanted to know what I could do on my own to help manage my symptoms and even better, do whatever I could to prevent it from happening in the first place.
After arguing for weeks with all of my doctors, I finally went back under the knife on March 2nd, 2021. They were able to remove 14 more nodes, which all came back negative for cancer thankfully!
Once I healed and had my tissue expanders filled to where I was happy with the size, I went for Radiation Mapping. I completed 25 rounds of radiation and with a lot of help from a good friend of mine who is a Radiation Oncology Nurse, my skin now looks like I never even had radiation in the first place.
Next on the list for my extended treatment was Xeloda. I started out on the maximum dosage for my height and weight, but each new cycle would have to lower the dose because of some side effects I had experienced. Especially for the dreaded hand and foot.
Being able to stay active during treatment is just 1 component of how I’ve been able to give cancer a good kick in the butt.
Having a support system comprised of my husband who is a 9-year Testicular Cancer Survivor, a mom who is a 2x Lymphoma survivor, and my truly amazing friends & family is the reason I’m standing here so strong-willed and continuing to fight.
I believe that everything happens for a reason, & by me getting cancer, it showed me what I was meant to do in life: help other women fight their toughest battles.
Get To Know Rori…
What has been the most challenging part of your journey?
What is your superpower?
What is your theme song?
What is your favorite movie?
What your spirit animal?
What is your favorite food?
If you could travel anywhere in the world, where would it be?
What is your favorite quote?
What I want all breast cancer patients to know…
You are the CEO of your body. No one is going to know anything more about you than you. Doctors are experts on how to help you, but they are not you. Utilize their knowledge and make the decisions that best suite what your quality of life is what you want & need!
— Rori Zura