Meredith’s Experience
Side effects took her from super fit to barely mobile – then a specialist got her moving again
I was diagnosed with invasive lobular breast cancer in 2021, at the age of 47 – the same age my mother had been when she died from multiple myeloma. My mother’s goal had been to live to see me graduate high school. She fulfilled her goal, and then she died.
After my own diagnosis, I knew my treatment goals needed to be more ambitious – “stretch goals,” as they say in the human resources field where I’ve spent my career.
My husband and I landed on three stretch goals:
1. Live to be 100. I’m going to be that old lady on the Smucker’s jar on the morning show I remember my mom watching when I was a child.
2. View this cancer experience as “one and done.” I’m not going to live the next 50 years of my life in fear.
3. Treat my body as kindly as I can throughout the process, but still be successful.
These goals would serve as a compass at every decision point in my treatment journey.
Making Treatment Decisions
The first decision was whether to participate in a clinical trial that involved preoperative chemo. We signed up for it because, based on what I knew from my mother’s experience, chemo seemed like a given.
But when my case went in front of the tumor board, they were split on whether chemo was right. The inkling that this might not be the right treatment plan kept tugging at me. So, the night before I was scheduled to have a port put in, I called the oncologist and cancelled. I didn’t want to put my body through a treatment that we didn’t feel entirely right about.
Surgery would be the next step. Our oncology team recommended a lumpectomy. To ensure lumpectomy was the best plan to get us to “one and done,” we got a second opinion, which confirmed the decision. We moved forward with the lumpectomy.
I had signed up for a radiation clinical study wherein half of the radiation treatment would take place during surgery. So, once they took out the tumor, they performed radiation in the tumor bed, completing the equivalent of 15 treatments while I was asleep. After the radiation, plastic surgery came in to rebuild.
Being Kind to My Body
The surgeons had removed about half of my breast tissue on the affected breast, so they needed to do a breast reduction and lift on the other side to make my breasts symmetrical. I didn’t want implants because, in accordance with my goals, I was trying to be as kind to my body as I could.
When they performed my surgery, they took a piece of tumor and tested it to determine its reactivity and responsiveness to chemo. Mine came back not responsive to chemo. It was affirmation: The decision to skip the preoperative chemo had been the right choice.
They also determined that my tumor was 100% estrogen and progesterone driven. I was ER/PR-positive and HER2-negative. My treatment plan was to finish up the radiation and start on an aromatase inhibitor. And we needed to suppress my estrogen. Ovarian suppression medication (goserelin) turned out to be ineffective for me, so I had to move to the next option: injectable medications they use for men with prostate cancer, which work to suppress the ovaries.
Those shots are horrible – it’s a huge gauge, and the medication seemed to be as big as a rice pellet, injected each month. It was painful; I cried and threw up every time. Crying and throwing up was not aligned with my goal of being kind to my body, so I knew I couldn’t continue; but I also wanted to honor my goal of this cancer experience being one-and-done. So, I made the decision to have a salpingo-oophorectomy – removal of my fallopian tubes and ovaries.
important reading about side effects
Side Effects 101: Learn how side effects of immune-related cancer treatments are unique and how to best approach them.
Go Deeper: Learn about side effects from hormone therapy and how their resemblance to autoimmune conditions can be the key to treating them.
Feeling Betrayed by My Body
After the salpingo-oophorectomy, I gained a significant amount of weight. It’s common to experience weight gain after a salpingo-oophorectomy, but that was little consolation to me. I wanted to get back to doing the things I had always done, in the way I had always done them. So, I started working out with a strength and conditioning coach.
And that’s when I noticed the joint pain. My hands hurt all of a sudden, and my knees wouldn’t allow me to squat. I couldn’t bend over. If I dropped something, it was just going to stay there. At not even 50 years old, I felt like an old lady. And since I had determined that I would live to be 100, that was a big problem – I wasn’t going to live 50 years like that!
I started trying everything I could think of: acupuncture, physical therapy, seeing a podiatrist, wearing orthotics. Some things helped a little, but nothing really moved the needle. It didn’t occur to me that my joint pain was a side effect from the aromatase inhibitor.
Before all of this, I had worked out at Orangetheory five times a week, rode horses twice a week, hiked in Rocky Mountain National Park – you name it. I had been super strong and flexible. So, it was extremely frustrating to find myself unable to even do a squat.
I was disappointed in my body for not being able to do the things I once had. It felt like a betrayal: I had pledged to be as kind as possible to my body during the treatment journey, and then my body ends up failing me. I was mad.
And I missed who I had been before treatment. I missed feeling strong and confident about what my body was capable of doing. I had become someone I didn’t recognize – literally. I saw my shadow, and I couldn’t tell it was me. It wasn’t just the larger size of my body; it was the shape, the posture, the movement – everything. The shadow showed a body constricted in pain and limited in movement. It was heartbreaking to see myself like that.
Finding Help
The breaking point came when we had to move from our beloved historic home in the city because I couldn’t get up the stairs safely. I don’t know if you’ve ever been in a house from 1880, but they have death stairs. They’re narrow and tall – too dangerous for me to navigate with severe joint pain and compromised mobility.
When we told our medical oncologist that my condition had forced us to sell our house, she said, “I think I know somebody who can help you.” That’s when we were connected to our rheumatologist – and that’s when things finally started getting better.
My rheumatologist was optimistic and sprung into action. She started me on a medley of medications, and within a week, I started feeling better. Since then, she’s tweaked my medication plan – we’ve tried different drugs to find the optimal plan for me.
The results have been phenomenal. I can squat to the ground now to plant bulbs in the fall, like I did before cancer. I’m lifting weights and Spinning. We’re traveling. I feel like I’m back to where I was before. I can recognize my shadow again.
And my goals have been met. My rheumatologist eased my side effects, making the aromatase inhibitor kind to my body. And now that my side effects are under control, I can stay on my aromatase inhibitor for as many years as I need to. That means I’ll be “one and done” and on track to make it onto that Smucker’s jar. I’m going to get another 50 years out of this body, and I’m going to make the most of them.
Meredith was diagnosed with breast cancer at 47. Her treatment was effective against the cancer, but side effects from aromatase inhibitors brought unexpected challenges that threatened to diminish her quality of life. Her relationship with her rheumatologist became a vital part of her recovery, helping her navigate the challenges of survivorship to get back to an active and fulfilling life.
Meredith's Case
Cancer Type
Invasive Lobular Breast Cancer
Immune-Related Treatment Type
Hormone Therapy
Hormone Therapy Side Effects Experienced
- Joint pain and swelling
- Mobility issues
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