Meet Robby Spring; Stage I Breast Cancer Survivor

Meet Robby Spring, a Stage I breast cancer survivor. Within five years, four out of the five members of her family were diagnosed with cancer, and they all went through an overlapping cancer journey together. Now, Robby works as a patient advocate and shares her cancer experience online to help others on their journeys.

How did your cancer journey begin?

My cancer journey began at the end of 2018. My mom was diagnosed and treated for breast cancer. This was the first immediate member of my family with cancer, and it was really scary hearing the word “cancer.” In the end, they caught her cancer really early, and her treatment was pretty straightforward. She had a lumpectomy, radiation, and tried adjuvant therapy, but couldn’t tolerate it.

From this point forward, we knew what cancer looked like for our family. My sister and I both got tested at the time, but we didn’t have any known genetic variants. I was clear, and my sister had a lump that was benign. Because of the lump, she was put into a screening program where she received regular mammographs and MRIs.

In February 2023, my sister was diagnosed with breast cancer. The doctors made it seem like the cancer was caught early, like my mom’s, and that she would just need a lumpectomy and radiation. IAfter her lumpectomy, we found out that my sister was Stage II, and she would need chemo and radiation. Her cancer looked a lot different.

At that time, I was waiting to see if I was eligible for high-risk screening. I asked my doctor to send me for a mammogram and an ultrasound because I was nervous. Through those tests, I was also diagnosed with breast cancer in May 2023. My tumor was smaller at 1.5 centimeters, but they found other spots, which meant my cancer was multifocal in the right breast.

Both my sister and I had the same cancer as our mom, which was hormone-positive and HER2-negative. My cancer was caught early, but it had multiple spots in the same breast, so the diagnostic process was a lot longer for me. I ultimately needed a mastectomy and opted for a double mastectomy.

I had to wait 11 weeks from initial cancer diagnosis to receiving the first line of treatment, which was insanely long. I had a double mastectomy with what was supposed to be immediate reconstruction. I ended up having a complication where they couldn’t perform a reconstruction. So I woke up flat, which was the worst moment of my life. I didn’t know for sure what the end result of my surgery would be, and when I woke up, I found out that I was in the worst-case scenario. I had to wait three weeks for a delayed reconstruction.

In the meantime, they sent my tumor sample out for a genomic test called a MammaPrint. I had no lymph node invasion and was Stage I. When MammaPrint came back, I learned I had a more aggressive subtype of breast cancer called Luminal B, so I would also need chemotherapy.

I went through chemo and did cold capping, but still lost most of my hair. During this time, I saw all these gaps in the healthcare system. I professionally worked in health and life sciences, and have a Master's in Neuroscience and another Master's in Translational Research. I worked across hospital research, government, and industry. As a patient, I saw all these gaps. I wanted to get involved and use my voice to help bridge the gap between the lived experience and what people think the lived experience is.

Once my sister and I received our cancer diagnoses, we continued down the path of genetic research to find out if we had a shared gene that caused this. My sister had a “variant of unknown significance” come up, but it didn’t come up on my test at the time. It didn’t come up for my mom either, but she was later retested as part of a study, and the gene came up on her panel. The truth is that there’s obviously something connecting our three cancer diagnoses; we just don’t know what the gene is. Known genetic variants only account for about 9 or 10% of breast cancers, with the BRCA gene accounting for 3%. We place a lot of importance on these genes, and they are important for preventative measures for a lot of women, but they’re also not the end-all be-all.

Adequate screening and diagnostic processes are paramount. They’re essential in order to detect and treat women for breast cancer. When you talk about a MammaPrint or Oncotype test, these are genomic tests that are different from genetic tests. These tests look at what’s actually happening on the cellular level. Genes are what you’re born with, but cancers are usually caused by mutations that happen throughout the lifespan. That’s going to get picked up differently. In your tumor, there are going to be specific genomic mutations that aren’t necessarily in your inherited genes in your blood. These tests look at and show you what subtype of cancer you have, which is really, really important in getting targeted treatment. The more we learn about cancer, the more we learn that the genomics of the cancer matter even more than where you find the cancer in the body.

How did having a background in neuroscience and translational research impact your cancer journey?

I’m a former researcher, but there are still things that are ingrained in me. My desire to dive deep and figure out pathways in terms of research and literature is still there. I was offered genomic testing, something not everybody is offered. I researched the different tests to find out which one I should do since I only knew I would have one test covered. I was lucky to even have the one covered under our public healthcare system, and I wanted to make the most of the opportunity.

I asked my oncologist at the time, “I want to have a genomic test, and I’m reading about them, but I haven’t seen a comparison study.” All I wanted to see was a table comparing the different tests. My oncologist told me that the table that I was looking for doesn’t really exist and gave me her own explanation about why she would pick one genomic test over the other. I went with her recommendation.

These tests are important. My mom was never offered a genomic test because she was older, and the cancer was an early stage and not aggressive. My sister wasn’t offered the test because her cancer was Stage II, and she was put into an automatic treatment plan. How and when these tests are used matters.

My father was also diagnosed with prostate cancer when my sister and I were finishing breast cancer treatment. So within five years, four out of the five of us in my immediate family had cancer. He asked for genomic testing because of our experiences, and with some advocating on our part, he was offered it. They lost his first sample, the news of which took us four months to receive. They sent in another sample, but ultimately weren’t able to perform the test. He never received that key information about the extent of his disease. It was disappointing, but a reflection on the current state of things.

Where are you now on your cancer journey?

I’m in what they would call remission, but they never fully confirmed that for me. I have adjuvant therapy for 5 to 10 years after my active treatment ended. For me, that therapy has me on Zoladex and Letrozole that keep me in chemical menopause, and I have to get zoledronic acid bone infusions. That’s really challenging. People think, “Oh, you had cancer. Are you clear? Is everything good? Are you done?” Well, no, because I had a hormone-based cancer and now have to be put into chemical menopause during my prime working and reproductive years. I haven’t had kids yet. Overall, life is a lot of medications and managing treatment. I’m in the post-breast cancer phase, but I consider myself to be still in treatment.

Mental Health and Cancer: Let’s Talk About It

I hear about scan anxiety all the time. My mom and my sister still get mammograms because they had lumpectomies. I actually don’t get any scans because I had a mastectomy. There’s part of me that wishes, “Can someone check me?”

There are a lot of things that I have to deal with while managing side effects. It takes a lot more for me to feel rested and get better sleep. I’ve prioritized living a slower life and learned to enjoy that, which is different yet nice.

There’s a lot of weird stuff that happens to me. I was put into menopause at 35, and I’m 38 now. I’m dealing with the same things that 70-year-old women complain about. The menopause piece is really scary because you hear all these crazy menopause and perimenopause stories that are all over the news. Because I had a hormone-based cancer, navigating menopause and its symptoms can be very complicated and frustrating at times.

It’s been a lot of trial and error. It’s important to look for anything that will help because there are so many concerns. I'm an advocate and collaborator with Rethink Breast Cancer in Canada. They're amazing, and they've provided so many resources, especially on things like sexual health.

What do you wish you knew about life beyond cancer?

I knew a fair bit because of my mom and sister. You have to push hard and be your own advocate because if you don’t push, you could get lost in the shuffle and have to deal with delayed treatment. It requires a lot of coordination. On paper at the outset, my family’s breast cancer diagnoses looked similar. We were even treated at the same hospital. But our treatment pathways and the choices we were faced with were really different.

Cancer is kind of a “Choose your own adventure” journey and you’re presented with options, but ultimately, every decision falls on you to make. The more that you’re on the borderline of things like I was, the more decisions you have to make. It’s really stressful.

What really surprised me was the reality of life after treatment. You think you’re going to be finished and you’re going to feel better. You want to get back to your life. It’s not like that at all. Your life is extremely different, and you’re different, but then in some ways, you’re the same. Life after cancer has been very challenging for me, if not more challenging than the cancer treatment part in a lot of ways.

How did having cancer shift your relationship with family, friends, and other loved ones?

My relationships are still shifting. There’s now an intentionality between how I spend my time and who I spend it with. The amount of downtime and rest I need after an activity has increased. Classically, I was extroverted, always running around “Go go go.” There are parts of me that love that. Now, I can do that for a little bit, and then I need downtime. I need to be alone, and I didn’t use to feel that way.

I get enjoyment from different things than I did before, which is wonderful. I’m still in the phase of seeing how everything is changing. Figuring things out surprises me.

What made you decide to start sharing your story and journey online?

There are a few women in my industry whom I admire. They shared their journeys on LinkedIn really beautifully. That was really impactful for me. I saw, especially in the health and life science industry in Canada, how important it was to share our stories.

Midway through chemo, I started sharing about some policy issues I was passionate about. I post strategically on things that I think are impactful for the industry. My advocacy and my career have kind of merged into one, and so I view everything as one and the same. When I see things that I think my network should know about, I post about them. I did some parallel types of work before I was sick, and now I’m impacted directly as a patient. A story can shed light and add a personal component to something you’re advocating for in the healthcare industry. Putting a face to who the policies will affect is important.

On Instagram and TikTok, I speak about other issues. I really struggled with losing my hair during chemo, as most women do. I struggled to find content that I could relate to during my regrowth process. It’s a really horrible process because you feel like crap on the inside, and you’re sick from chemo, and then when you see a reflection of yourself in a mirror or car window, you look sick too. You don’t have eyelashes, you don’t have eyebrows, and you don’t have hair. I had horrible styes from chemo, and I was bloated from the steroids and chemo. I felt and looked like crap.

When I started bouncing back and recovering, it was a slow process. I kept obsessively looking for chemo hair regrowth content to see what my hair would look like at the different phases, and I didn’t find anything that I connected to. I started, just for myself, taking photos every week so I wouldn’t obsessively look at my scalp. I started that three weeks after chemo, and week by week, I would see a little more progress. It became satisfying for me. Up until that point, I didn’t let any of my friends see what I looked like without hair. I always had a wig or a hat or something on. I was so proud of my regrowth that I started sending collages to my best friends. I kept doing it week by week and realized that I wanted to create channels for other women to see my regrowth process. What I needed to see when I was struggling with my hair was content that was positive and realistic.

Now on TikTok, I share more of the intimate details of things such as hair loss during chemo. Sometimes you forget the little steps that happened because time has passed. I initially forgot how painful it was before my hair fell out during chemo. I had a thick mane of hair, and it was so painful in the days leading up to it falling out. Most of my hair fell out in one go in the shower. It was so painful, itchy, and uncomfortable. When I shared that I never shaved my head during chemo, I had some people commenting, “I had to shave my head because it hurt so bad and I couldn’t take it anymore.” Every aspect of each person’s cancer journey is unique, and people have different needs when looking for relatable content online. It’s impossible to fit every need, but I hope that I can help some people.

What do you want others to know about life beyond cancer?

Cancer is a horrible thing that you go through, but there’s a lot of beauty there, too. There are a lot of things throughout the journey that you learn to appreciate.

There are many things waiting on the other side of cancer. There’s a different level of depth and resilience that I know I’m capable of.

The other part is that there is a lot of fear. It’s scary. I live with a lot of health concerns now. I try not to let myself say that it feels “unfair.” There are two ends of beauty and pain as a result of cancer, and I’m living in whatever the middle ground is here.