Facing Osteosarcoma as an Older Adult: Monique’s Story

She Thought She Needed a Chiropractor

Monique had dealt with pinched nerves in the past, so, in early spring 2020, when a twitch radiated from her thigh into her back, she took the obvious next step and booked a chiropractor appointment.

Then COVID lockdowns happened. She put it off. By June, her quadriceps felt tight, and she assumed the gym would loosen it back up. For a while, that story held. She flew to Alaska and hiked Mt. Baldy. “I did a lot of walking on that trip, and I was fine. I had a blast,” she says.

But later, driving from her home in Massachusetts to visit her son in Kansas, the pain flared and she started limping. After several doctor visits, the pain and swelling continued to get worse over time. Bent over in pain, she finally saw an orthopedic specialist.

From Long Hikes to Barely Walking

Monique thought she had a muscle knot and used a rolling pin to help relieve her pain. She didn’t realize the “knot” was actually a tumor.

By late September, she could barely walk. Her doctor called for an expedited orthopedist appointment. “Within a few weeks, it had doubled in size,” she says. “I could get around on crutches, but it was very painful. And a brace I had been fitted with was no longer fitting at the top.”

An X-ray found the tumor. Within days, she had a bone scan, CT scan, MRI, and needle biopsy. Two weeks later came the diagnosis: high grade osteosarcoma. This means that the cancer cells grow and spread more rapidly than lower-grade cells.

Osteosarcoma Treatment Is Different for Older Adults

Monique and her family moved Thanksgiving up, gathering everyone before chemo started — a regimen that would include two drugs, cisplatin and doxorubicin. (Methotrexate, which is commonly prescribed for osteosarcoma, was not recommended because of her age.)

The setbacks came fast. Coming home after her first day of chemo, her femur snapped. The pain was excruciating. She was rushed back to the local hospital in Southbridge, Mass., then transferred to UMass Memorial Medical Center in Worcester.

Her doctors laid out three treatment options: leave the leg and hope it healed, amputate, or install an external fixator, where metal pins connect the femur to a frame outside of the leg while it mends. She chose the fixator. She was hospitalized for more than a month, recovering from the surgery on her leg. The day after her surgery, she also finished her first round of chemotherapy which caused fever and a lack of white blood cells. Her second round of chemo resulted in a need for blood transfusions.

A Difficult Decision, Made Together

After a third round of chemo, it became clear that the external fixator wouldn’t be enough. She needed to choose between amputation or limb salvage. She spoke with her surgeon, who outlined each option, and all her family phoned in during the appointment.

“All of my six children, their partners, and my cousin were on the line listening,” she says. “Everyone was on the same page, even my youngest daughter, who was a junior in high school at the time. It’s an emotional rollercoaster, not only for the patient, but for the family.”

Limb salvage would mean a more difficult and painful recovery and a higher risk the cancer would come back. With her family’s input and support, she decided that amputation was her best option. “Losing my leg had been my biggest fear, but I came to terms with it,” she says. “Now I say, ‘Life over limb.’”

A Slow Recovery, A New Prosthetic

Chemo slowed Monique’s healing from the amputation, and she also developed a MRSA infection that needed to be cleaned out surgically. After speaking with several doctors and other osteosarcoma patients, she carefully considered her options and decided to skip her final two rounds of chemo.

Because her amputation is high, meaning halfway above the knee, a prosthesis doesn’t fit as cleanly as it would lower on the leg. Still, she’s active and works to strengthen her muscles at the gym. She’s waiting for insurance approval for a procedure called osseointegration, a procedure that anchors a titanium rod into the remains of her femur, giving the prosthetic leg a better attachment. “In essence, it will feel like I have my leg back,” Monique says.

Working During Cancer Treatment

While many osteosarcoma patients are juggling high school or college, Monique was a working adult. She kept her job as a senior executive assistant at a dialysis company through the entire ordeal, bringing her computer and headset into the hospital and arranging her work around the doctors’ schedules. She also worked a remote part-time job as a community outreach coordinator for a nonprofit organization during this time.

“It was nice to have the distraction of work to keep my mind occupied,” she says. Her job gave her something to focus on, especially since COVID meant she couldn’t have many visitors.

Each chemo treatment required time off to rest, so she made the necessary arrangements with her supervisor and rested as needed. “I would be wiped out. I just couldn’t do anything. It was really hard,” she says.

Monique was also working toward her master’s degree in early American history when she was diagnosed, but she paused her studies during treatment. Fighting cancer and holding down her job took all of her strength. Now, she is back in her program and halfway done with her thesis.

Her Advice to Others

As Monique says, “There’s always a light at the end of the tunnel. Never give up on that hope, because once you give up on hope, it feels like everything else is lost.”