Leslie’s Story & Efforts for Metastatic Breast Cancer Patients

Last October I wrote about “Riding a Bike Versus the Hard Part” after riding in a 3-day event where I met many patients, their friends and family and the challenges they face every day.

Leading up to both of these rides on the East and West coast last Fall I met Leslie through social media and we met in person in California before the start of the ride. At the time, Leslie was on active therapy for metastatic breast cancer but persevered through and participated in the ride for personal goals and to help bring awareness to this issue.  I sat down with Leslie recently near her home to ask her about her experiences not only as a patient, but also as a healthcare provider and her advocacy efforts for the metastatic breast cancer (MBC) community.

Given your perspective as a nurse and a patient, can you describe what the feelings are being on both sides of that experience?

It’s an interesting conundrum being a patient and a healthcare professional. Most of the time I try not to disclose that I’m an RN when I’m admitted to an inpatient facility, or seeing a new doctor or nurse. I want to know how I will be treated as a lay person. That helps me understand how the medical world is for the general population. Here’s a small example: I found the lump under my left armpit while showering. The second I felt it I knew it was bad. I immediately called my OB/GYN (she knew I was an RN) who I saw a couple months before. I was alarmed at how quickly (the next day) she wanted to see me. As she was palpating my armpit and breast she said, “I don’t want to worry, but I also don’t want to ignore this.” When your physician gets you an appointment that quickly, then immediately calls downstairs to get you in for a mammogram and ultrasound a day later, you know this is serious. Your non-medical self wants to stay in denial, while your medical self says, “oh shit.” During the mammogram, nothing alarming happened. The US was different. The US screen was facing me (bad decision on the tech’s part, but in her defense, I didn’t disclose that I was an RN) and I could see four large bright white round shapes screaming at me. I said to her, “That’s not good.” She immediately rose from her seat and left the room to get the radiologist, again…this is not good. He came into the room and I said to him, “It’s not good when the tech runs to get you. What is it? Lymphoma? Infection? What?!?” I was a Neonatal ICU nurse. I didn’t know much about cancer, but I knew just enough to ask the right questions. He said he was going to call my OB himself and to follow-up with her. I tell this story a lot b/c it encompasses all the feels and concerns of being a person and being a healthcare professional. I was scared. I wanted to live in denial. I knew too much. And I was only 31.

Can/did you draw on your experience as a nurse when you started on your own journey in the healthcare system?

I was fortunate in my experience that I had great physicians that were my advocates during the beginning of my cancer life. I asked my doctors after each appointed, “Who do I call next? What are the next steps?” I contacted my insurance company to find out what was covered, what facilities were in network, how much our deductible was if we had one. I think that if I wasn’t an RN I could have been lost in the healthcare system. Most people, from my experience, don’t know what to ask, who to ask, or take the wait and see approach. If I would’ve waited for doctors to call me, I would be dead. I called my doctor’s offices constantly for results, planning, lab draws, surgery scheduling. I was, and still am, the very squeaky wheel.

I became aware of your interest in the MBC community through social media. The campaign about more funding, less ribbons, “Pink is Not a Cure” and “Pinknado” has seemed to gain some traction and your voices are being heard. How did this come about?

I became passionate about MBC when I was diagnosed. I hate to say it, but I was ignorant to the facts of MBC. I was six years out from the day that I found a lump under my armpit to the day that I was having a craniotomy to remove MBC from my brain. I thought that since I hit the five-year mark I was out of the woods. I had no idea that 30% of early stagers become metastatic. That’s frightening; the number that become metastatic and that I’m a healthcare provider and had no idea what the statistics are. I did everything you’re supposed to do. I went through dose dense chemo, radiation, bilateral mastectomy, a year of immunotherapy, and five years of hormone therapy. I saw my oncologist every six months. I thought I was “cured”. When I realized how wrong I was I knew I had to educate others, including myself. So, I found METAvivor and other Stage IV groups through social media. We are a fierce bunch of MBC thrivers who take advocacy and educating the public very seriously.

Since becoming metastatic I have volunteered for METAvivor, participated in a Die-In on Capitol Hill, lobbied on Capitol Hill, written a letter for a candidate for the DoD Komen Innovator award nominee, I’m a patient ambassador, and have participated in several other projects that support MBC. I think it’s important to get our voices heard. I want people to know that we are young women and men living with this disease. We need to educate the population on where funding truly goes for breast cancer. Money is going everywhere but research. I find it shocking that only 2-5% of money raised for breast cancer goes towards research. Without research, there is no cure and your quality of life depends on what chemo/immunotherapy you’re currently taking. Everyone is aware of the pink ribbon, but not everyone is aware of where the money goes. Sadly, I also believe most people have forgotten how the pink ribbon got started…a woman died from breast cancer that spread to other parts of her body…metastatic breast cancer.

Did your experience as a healthcare provider have any influence on your feelings and advocacy about this?

Absolutely! As a healthcare provider one of our jobs is to advocate for our patients. I wanted to help educate and advocate for those who can’t. To this day, I say I do this (advocacy, teaching…) for those who can’t. Without our voices where would we be?

What would you like pathologists and other healthcare providers understand about MBC, lack of funding and what we can do about it? Is there a role for pathologists to advocate for patients?

Anyone can play a role for MBC patients. We appreciate and love anyone that speaks for the stage IV community. We need more people advocating for us, especially those outside of the mets community. There is so little knowledge about MBC. I’m surprised when friends ask me when my treatment will end, or when I’ll be cured. The general public has no idea that MBC is terminal. Treatable to a point, but terminal.

Last October we met in person during Tour de Pink West Coast, a 3-day bike ride to raise funding and awareness through Young Survival Coalition (YSC), an organization dedicated to young women with breast cancer. How effective have organizations such as YSC been at advocating for the MBC community?

I’m not sure how involved they are in the MBC. I think most breast cancer organizations are just now listening to the mets community. Women as young as 19 are being diagnosed with MBC. That’s extremely alarming. There is a void for the younger community. I wanted to ride last year to hopefully inspire other people to ride, maybe make MBC less scary, and to challenge myself. I want to do the most I can while I can.

Anything else you would like to add or mention or a pathology/laboratory audience?

I love the pathology and laboratory community! You all see our disease before anyone else. You know before anyone knows what is going on in our bodies. I would love to see more collaboration within the medical/research areas. We need to talk to each other, make suggestions, and work together. That is what will eventually find our cure or medications to extend our lives with a good quality of life.