Meet Rori Zura | Triple-Negative Breast Cancer Survivor, Founder of Foobs & Fitness

Meet Rori Zura, triple-negative breast cancer survivor, breast cancer exercise specialist, and founder of Foobs and Fitness. Read on to learn about her personal breast cancer and fitness journey, and how she works as an advocate to help current cancer patients reach their physical goals!

What is your personal cancer journey?

Rori: My cancer story begins in my 20s. I found lumps in my breasts throughout almost all of my young adult life. Many of my family members had been through treatment for breast cancer or lymphoma. My husband had been diagnosed with testicular cancer in his 20s. Because of all this experience and family history, I wanted to be as proactive as possible about these worrying breast lumps. 

While still in my 20s, I asked my medical team if we could remove my breasts entirely. I didn’t want them. I didn’t want to go through what my family had gone through. I just knew that one day, I would get cancer too. Unfortunately, my insurance did not deem this preventative mastectomy medically necessary. My cancer-preventative surgery was labeled as cosmetic, forcing me to pay thousands of dollars out of pocket if I wanted to have it. I did not have that kind of funds to drop on surgery in my 20s, so I let it go. My medical team said I was fine, so I should be fine. 

When COVID-19 hit, I lost my job. While dressing for a virtual job interview, I felt another lump in my breast. Luckily, I had someone in my life who had seen these lumps previously and knew about my issues with them. I showed him and he felt it, but he reminded me “Isn’t your period coming soon?” Immediately relief washed over me. This was just another one of my normal hormonal swellings! Then, my period came and ended. For the first time in my life, the lump never went away. In my gut, I knew what that meant.

Freaking out, I tried to make a doctor’s appointment. Luckily, my doctor got me in quickly despite COVID-19 office restrictions. He ordered me a mammogram and an ultrasound, two tests that I had received several times before. The biopsy he ordered alongside those tests was a first for me.

The day before my wedding anniversary, August 17th, 2020, I was diagnosed with triple-negative breast cancer. 

My medical team was in Manhattan, but I lived out on Long Island. The pandemic was still in full force in August 2020. Do I risk taking the train to my treatments to stick with my regular team? I ended up interviewing a bunch of different oncologists until I found a team closer to my house. This team was gung-ho about my treatment options right from the start. They recommended me a fertility specialist since I was 33 with no kids. Then, I started medication to enter early menopause, suppressing my ovaries to protect as much of my fertility as possible after cancer treatment. 

Only a few days after I completed the egg harvesting and started my medication, my team wanted me to begin full cancer treatment. My hormones were all over the place, my body was sore, and I was not handling these changes well. I desperately needed a break. I asked my doctors for a few days off so my body could regulate itself before starting treatment, and they permitted it. My husband and I drove upstate for a short staycation with our two dogs. As a testicular cancer survivor, he had an idea of what treatment could do to me physically and advised me to take the extra time to prepare for it physically and mentally.

After that short reprieve, I started four rounds of Adriamycin (Red Devil) and then four rounds of Taxol. My original treatment plan was scheduled to finish in December 2020, but my heightened liver enzymes caused my final treatments to be delayed until January 2021. This was symbolic for me in a way. My birthday is January 9th, and I finished treatment on January 6th, 2021. Happy birthday to me! I made it through cancer treatment, I prepared to enter another year, and I was finally going to receive the mastectomy I’d asked for years prior.

My mastectomy + expander placement surgery was scheduled for the day after a massive snowstorm slammed the Northeast. I was so scared that my surgery would get canceled. My superhero surgeon lived in Manhattan and told me “If you can make it into the hospital, I’ll be here for you.” I was his only surgery that day.

My sentinel node biopsy came back negative. I had clear margins on everything so they sent me on my way. A week later, my breast surgeon called. “Are you sitting down?” They’d found traces of micrometastases (microscopic pieces of my original tumor) in my lymph nodes. “You have to go back for another surgery; we need to remove the rest of your lymph nodes.”

I fought this decision tooth and nail. I didn’t want to go for another surgery. I’m an athlete, and removing all my lymph nodes would leave me with a high risk of lymphedema. When my medical team didn’t budge on this decision, I told them I wanted to talk to a lymphedema specialist beforehand. I’m so happy that I advocated for myself and fought to see that specialist, it allowed me to go into that second surgery with so much more confidence. Taking back that small amount of control helped me so much mentally.

The specialist taught me the signs and symptoms of lymphedema and how to properly care for my wounds after surgery to prevent lymphedema from forming. She was surprised to see me in her office as a preventative patient, as most people unfortunately never know about lymphedema until they have it. The doctor took my baseline arm measurements and told me exactly what to watch for as I healed.

Seeing this specialist allowed me to go through that second surgery process with decreased fear and increased confidence. Taking back that small amount of control and receiving that education helped me so much mentally. It helps me to this day as I deal with recurrence anxiety, and have more knowledge of what my skin changes mean. 

My lymph nodes from my secondary surgery came back negative for cancer, but I still needed to undergo aggressive treatment. I did 25 rounds of radiation and then took oral chemo Xeloda for six months. 

How has cancer affected your athletic journey?

Rori: BC (Before Cancer) Rori played soccer, danced, and worked at Orange Theory gyms. I was always moving. During treatment, I still worked out as often as I could. Cardio would make me super out of breath, so I focused on weight lifting. I never lifted as heavily as I did during treatment, even my husband/workout partner was shocked. I couldn’t walk upstairs without taking a break, but I could do 6-8 reps with a 40-lb weight and feel completely fine. 

I always made sure to confirm all my workout plans with my doctor before starting. Between treatment and COVID-19 quarantine in 2020, working out kept me sane. 

Immediately after I finished cancer treatment, I tried to go back to playing soccer. Every time I was hit with the ball, I immediately regretted trying to play soccer again. My whole body felt very raw for months post-treatment. So I took another break from that sport and just continued weight lifting.

Now, I’m pretty much back to where I was pre-cancer physically. Sometimes I even feel like I’m more active now than I was before treatment.

What are some physical and emotional challenges you faced?

Rori: Isolation. The combination of the pandemic and active cancer treatment was difficult to experience. I wasn’t even able to receive something as simple as a hug most of the time from those closest to me. On the other hand, because of the Covid lockdowns, I felt closer to everyone than I had ever felt before. I would scroll through Instagram and TikTok and see others whose lives were paused until lockdowns lifted. No one was traveling, no one was seeing their family for the holidays. Everyone was venting about their experience online. I enjoyed that a little bit because I didn’t feel alone in my space of wanting to be anywhere else but at home. 

So many of my family members had gone through cancer, yet still hadn’t walked a mile in my shoes. They still didn’t understand fully what I was experiencing at this time in my life. When I would talk about treatment and my struggles, I would get a lot of toxic positivity thrown back at me. The last thing I wanted to hear constantly was “You’re doing great!” or “You’ve got this!” No. I’m not doing great, and I don’t want to have this! I want to be living a normal life. I’m surviving because that’s the only choice I have. The people closest to me who HADN’T gone through treatment were often the ones who allowed me to be angry, upset, and the full range of my feelings.

My oncologist and I once had a large disagreement because he had told me “It’s my job to keep you alive.” I responded “That’s a lie. It’s your job to try to give me a life worth living.” Just because I survived cancer physically doesn’t mean that I will be able to live an enjoyable life. I need to be able to either enjoy the things I used to enjoy pre-cancer or live a life where I can find new things to enjoy just as much. If I can’t enjoy life after cancer, what’s the point of going through all this treatment? That’s the brutal truth. I want to know the tools that I have to be able to pick myself back up after cancer. 

My plastic surgeon was actually the first one in my medical team to actually think about my future. I originally wanted a DIEP FLap surgery, but I wasn’t a candidate because I didn’t have enough fat. He explained to me “Rori, it’s your body. We’ll do whatever you want. We can always find fat somewhere if that’s what you want to do. But think about this. You don’t have kids now, but if you decide you want to have kids after treatment and you’ve already cut a DIEP flap, that can cause a lot of complications down the line.”

I started crying. I told him “You are the first person to think about how the things I’m doing right now will impact the future I still plan to have. I cannot tell you how much that means to me. You have my blessing to recommend whatever you think is best, because I trust that you have my best interest at heart.” In the moment of cancer, everything is so stressful that you can’t think about what you might want in 10 years. Medical teams that do that thinking for you are a godsend, a diamond in the rough. I almost wish he taught a bedside manner class for other medical professionals.

What influenced you to create "Foobs and Fitness"?

Rori: The focus of Foobs and Fitness on social media is education and patient advocacy. I’m a huge patient advocate for lymphedema and breast cancer awareness. I love educating people on the different types of breast cancer and how breast cancer relates to exercise, food, and fitness. When I had to advocate for myself during my secondary lymph node surgery, I reflected on when my insurance denied my initial mastectomy in my 20s. I allowed them to tell me no, and look where it got me. I wasn’t going to allow that to happen to me ever again. If I was experiencing this struggle, other people were as well. 

During treatment, I would get tired and feel weak, but I didn’t have all of the typical burdensome chemo side effects. The weight-lifting and constant exercise definitely contributed to my good health. There are studies now that show how regular exercise reduces your risk of recurrence, reduces your cancer side effects, and combats osteoporosis. I promised myself that I would return to school after my surgery, gain my cancer exercise and personal training certifications, and study the link between oncology and exercise. 

I received my personal training certification from NASM (The National Academy of Sports Medicine). Then, I attended the Cancer Exercise Training Institute to become a certified Cancer Exercise Specialist. I opened my virtual doors to clients in Q4 2021. My first client started training with me shortly after finishing radiation in February 2022, and has been working with me ever since. I’ve seen her through multiple surgeries, the remainder of treatment, and oral chemo. She’s moved from her physical rock bottom to soaring far beyond her previous expectations, and I’m absolutely honored to be a part of her journey.

Now, I have a client list of people whom I help. I provide virtual one-on-one training to individuals across the country and visit local New York clients in person. At Foobs and Fitness, I only focus on individual training. Group classes can be tricky when you have cancer thrivers and survivors on different physical ability levels. A patient in active treatment has vastly different physical capabilities than someone who had cancer 5 years ago, and that’s not even counting how different cancer types can affect exercise. My focus on specialized fitness protocols for my clients allows me to help those dealing with the effects of lymphedema and its muscle composition differences. 

Who should reach out to Foobs and Fitness for support?

Rori: Foobs and Fitness’ mission is to bridge the gap between the medical world and the fitness world. I can work side by side with physical therapists and oncologists for patients who are in treatment. 

Currently, Foobs and Fitness offers one-on-one exercise training sessions virtually and in person. Those located within my designated driving radius can receive at-home training sessions. This allows patients in active treatment to exercise without putting themselves at risk in a physical gym setting. We work with weights, without weights, and with resistance bands. My clients set 6 or 12-month goals with my guidance, and then we set up a workout schedule around those concrete goals. 

I’m also certified in facilitating assisted stretching. A friend donated a massage table to Foobs and Fitness, and I can bring it to my clients’ homes for assisted stretches. These stretching styles can be cathartic for individuals who have gone through surgeries and radiation, as they feel their muscles and skin release the tension caused by the trauma of treatment. 

Individuals interested in signing up for training sessions can connect with me at foobsandfitness.com. Those wanting education, to support the mission, or short exercise inspiration videos can connect on Instagram, TikTok, YouTube, and Facebook @foobsandfitness. 

What are some things you've learned since starting this program?

Rori: There are so many stages of a cancer journey. We usually categorize a “cancer journey” as diagnosis, treatment, surgery, and survivorship. But there are so many subcategories that aren’t being realized. When treating my clients, I’ve been able to see all the different pathways that cancer patients potentially walk down. I use my own experience as a cancer survivor in combination with my clients’ experiences to connect the dots. I can take what I’ve learned about cancer back to the wider cancer community. “You are not alone. You shouldn’t have to fight by yourself.”

Mental health is a huge component of your physical health. I’m an advocate for making sure that you care for both your physical and mental health when going through the struggles of an illness because they interact with one another. Treatment should be holistic and address both aspects of your health. If your mental health suffers, your physical health suffers. If your physical health suffers, your mental health suffers. 

Lastly, I’ve learned and taught my clients about the importance of learning how to breathe. Learning to breathe properly is an exercise. Learning meditative and breathing techniques is integral to reaching your exercise goals. 

What is your future goal for Foobs and Fitness?

Rori: I want to grow Foobs and Fitness’ exercise offerings more. I hope to one day open a brick-and-mortar facility for clients to visit. Building a community of cancer patients looking to improve their physical mobility is my dream. As we move to a more stable environment with the pandemic, more people want to get out of the house and meet others in their community.

The most difficult part of attending a cancer support group is often the physical act of walking into the building. Many of these groups take place in treatment centers, the place where cancer community members receive the PTSD they are trying to alleviate by going to support groups. They have to walk back into those trauma-causing spaces to receive help and also have to admit that they are going to a “support” group. If this sort of space was framed as an exercise center and was completely separate from a cancer treatment facility, the support could be found in a neutral space. It’s a lot less apprehensive to someone struggling. This would create a group of cancer peers who could gather, receive support from one another, and also reach their fitness goals.

Lastly, I will always be focused on patient advocacy. The healthcare system as it is right now is not working. Modern medicine has come leaps and bounds since my parent’s generation, which wasn’t that many years ago in the grand scheme of things. How can we supplement what we have now to improve outcomes for people in the future? People are being diagnosed with cancer younger and younger. How can we prevent cancer? How can we help ourselves in survivorship? 

What message would you give to those recently diagnosed with cancer?

Rori: You are your own advocate. 

You are the CEO of your body. You are the only one who knows what feels right and what feels wrong. 

Your medical team is there to guide you and should be working as a collaborative unit with you. 

Speak up! This is your first (or maybe second) time experiencing something like this. But this could be your doctor’s “millionth” time. Doctors become desensitized to cancer as dealing with patients is their life. But this is only a chapter of your life, so speak up for yourself. Ask questions, more than you think you should. You’re the one who is going to have to deal with the side effects of treatment and life post-cancer, not your doctor.

Learn more about Foobs and Fitness and reach out for support: https://foobsandfitness.com/