Stage IV metastatic breast cancer survivor Lesley shares her story of taking control of her care. After her oncologist chose aggressive treatment that would include 8 rounds of chemo, bi-lateral mastectomy, and radiation, she experienced a severe emotional toll along with extreme nausea, fatigue, bone aches, low blood counts, neutropenia, gasping for breath, and then sepsis. After receiving an emotional response when asking for a second opinion, Lesley was able to get an appointment with another oncologist, took control of her own life, and decided to stop treatment until she achieved her goal of climbing Mt. Whitney. And after summiting the mountain, she chose a new treatment with her oncologist based on side effects and quality of life.
“We have this one life, let’s live it to the best of our ability. These actions are key to staying on your path to empowerment.”
My name is Lesley. I live in the Rogue Valley in Southern Oregon. In 2013, I was diagnosed with stage IV metastatic breast cancer.
During a monthly self-check, I noticed a lump in my right breast. I went to the primary care doctor who swiftly ordered a mammogram, ultrasound and a biopsy. Shortly after I met with an oncologist and to my surprise, I was immediately provided with a treatment plan of: 8 rounds of chemo, a bi-lateral mastectomy and radiation.
The side effects of initial treatment literally knocked me off my feet. I was plagued by extreme nausea, fatigue, bone aches, and low blood counts which resulted in daily shots for neutropenia. I would wake up in the middle of the night gasping for breath.
A few weeks into treatment, I was admitted into the hospital with sepsis. The port-a-cath site was infected and my family and I specifically asked for it to be removed. However, my care team was exclusively focused on saving the port-a-cath because of future chemo treatments I would need.
The side effects snowballed which really scared my family. I recall my husband yelling and asking why someone wasn’t doing anything to help me. My situation was dire and we felt no one was listening to the emotional toll of the treatment. Rashes as well as swelling, engulfed my body, and I felt at this point, it was not the cancer that was killing me, it was the treatment plan that the doctors set forth, and my body was rejecting anything and everything put into it, and yet again, the oncologist wanted me to start another round of chemo.
I knew that things had to change. I soon took matters into my own hands. I told my oncologist that I would not go back onto chemo, however, I pushed for additional treatment options. When I told her I was going to get a second opinion, she was upset with me and asked me to meet with her colleague. I told her I would not meet with another oncologist from the same practice.
I was referred to an orthopedic surgeon who was doing my bone biopsy and within one hour of meeting me and hearing my story, he suggested a second opinion doctor. He picked up his cellphone, called her right from the examining room and within a matter of time had already set up an appointment for me. I later had a successful breast sparing lumpectomy instead of a mastectomy. My new care team was extremely thorough, but also respectful of me and the quality of life I desired.
With a grip on my treatment path, I decided to start taking my life back and I began hiking. My goal for the year was to train for 8 months and summit Mt. Whitney. I met with my oncologist and told her I wanted to stop treatment until after my big climb. We did stop treatment and shortly after, I summited Mt. Whitney.
Several weeks later, I met with my oncologist and started another regimen, of which I chose as well with guidance from my oncologist. I progressed in 2018, again I also decided which treatment option I wanted to do, based on my quality of life, and the side effects I was willing to live with.
My advice to other metastatic breast cancer patients:
- Find your voice, you have one
- Take full control of your care at the outset
- Feel empowered to question your care team at any point on your journey
- Decide on the quality of life YOU want to have
- Don’t be afraid to get a second opinion
Since my diagnosis, I’ve made it my mission to advocate for my metastatic breast cancer community. Patient advocacy is my full time job. I share my story to inspire and empower others to take control of one’s care.
My best advice is to find and build a care team that sees you not as a number in a queue of patients, but as the person whose life is represented in that medical file. We have this one life, let’s live it to the best of our ability.
These actions are key to staying on your path to empowerment.