April 03, 2023
Clear cell carcinoma survivor: Second opinion at MD Anderson saved my life
BY Valerie Jones
When Josephine Spence experienced a sudden, agonizing pain in her right calf, her husband and daughter urged her to go to the hospital right away. She had an ultrasound at the emergency room and was told she had a blood clot in her leg. She was put on a blood thinner and sent home.
A week later, she began to have bloody vaginal discharge, so her gynecologist did an ultrasound, which showed a mass on her right side. As the doctor began scraping the lining of her uterus for sample tissue to biopsy, Josephine became alarmed.
“She used a plastic see-through container, and I could see everything,” she says. “It looked like fermented hamburger meat. The doctor shook her head and said, ‘This is bad.’”
Josephine feared she had cancer, and the biopsy results confirmed it. She was diagnosed with clear cell carcinoma, a rare type of cancer in which the cells look clear when viewed under a microscope. Most often, it occurs in the kidney and female reproductive organs.
“It was like getting hit by lightning,” says Josephine. “One day, I’m a healthy 57-year-old woman, and the next day, I have cancer.”
Josephine’s gynecologist had never given her a pelvic exam, so nobody knew how long she’d had the tumor. That same day, Josephine visited a local hospital for a CT scan, MRI and ultrasound. The doctor told Josephine she had stage IIIC cancer. At the time, her tumor was 4.1 centimeters. Four days later, Josephine saw a cancer surgeon and learned the tumor had grown to 8.1 centimeters.
The surgeon gave her two choices: have a radical surgery, which would require her to wear ostomy bags to use the bathroom for the rest of her life, or undergo chemotherapy to try to shrink the tumor. The doctor wasn’t sure that the chemotherapy would kill the tumor.
“At that point, all I wanted was to live long enough to attend my daughter’s college graduation and fly to Singapore to tell my mom about the cancer myself,” says Josephine. “So I said, ‘Let’s do the surgery.’”
Getting a second opinion at MD Anderson
Josephine’s surgery was scheduled for April 2021. After getting her first COVID-19 vaccine, she had to wait a week before she could have surgery. During that time, a friend called Josephine’s husband and suggested she get a second opinion before having surgery.
“We did research online, and we knew that MD Anderson is the best in the nation for cancer care,” says Josephine, who told her husband she wanted to come to MD Anderson.
The next day, Josephine and her husband took a flight from their hometown of Chicago to Houston, and met with gynecologic oncologist Shannon Westin, M.D.
“Dr. Westin was a breath of fresh air,” says Josephine. “She was very compassionate. She listened to me. She told me surgery wasn’t the only way to deal with this tumor.”
A second biopsy confirmed that Josephine had clear cell carcinoma. After performing a pelvic exam, Westin shared that the tumor was attached to Josephine’s colon and rectum. If they moved forward with surgery, there would be no way to salvage Josephine’s bodily functions. She would need ostomy bags.
“Dr. Westin looked at me as a whole person,” says Josephine. “Even as a surgeon, she didn’t push surgery. She knew I didn’t want to wear two ostomy bags for the rest of my life. She understood my needs and found an alternative.”
Beginning treatment for clear cell carcinoma
Josephine’s treatment plan began with chemotherapy in May 2021. She had no side effects from her first chemotherapy infusion, which was a combination of the drugs paclitaxel and carboplatin. However, after her second treatment, she had a blood clot in her lung and spent 72 hours in the hospital receiving a blood thinner through an IV.
“I began to realize this struggle with my tumor was not going to be easy,” says Josephine.
She experienced heavy vaginal bleeding, hair loss, and nausea and vomiting.
Eventually, Josephine was given a stronger blood thinner that she injected into her stomach twice daily. After a scan revealed the tumor wasn’t shrinking, Dr. Westin started Josephine on a targeted therapy drug, adding bevacizumab to her chemotherapy treatment.
After six rounds of combination chemotherapy treatments, Westin pushed for radiation treatments. That’s when Josephine met with Ann Klopp, M.D., Ph.D., who shared her plan for MRI-guided radiation treatment.
“Meeting Dr. Klopp was more like visiting a relative,” says Josephine. “She’s so down to earth. She was confident that radiation would work for me.”
A week later, Josephine started radiation. Klopp used an MRI linear accelerator to trace the tumor in real-time. This allowed for more efficient radiation delivery.
Josephine’s only side effect during her radiation was extreme fatigue. She had 33 days of radiation treatment. The tumor was still there, but the radiation therapy would continue to work for another six months to a year.
Because clear cell carcinoma has a high chance of recurrence, Westin performed 15 more targeted therapy infusions of bevacizumab. Josephine had her last infusion in January 2022.
A rebirth after cancer
In February 2022, Josephine returned to MD Anderson for a scan. A tumor that was once the size of a cantaloupe was now only a thin layer of scar tissue.
That’s when Westin and Klopp told Josephine she was in remission.
“It felt like a rebirth, like I had a new life,” says Josephine. “MD Anderson knows how to deal with cancer. I’m so glad I got a second opinion. It saved my life.”
Every time Josephine visits MD Anderson, she puts on makeup, eyelashes, lipstick and sometimes a wig. She says she wants to look her best because you have to look good to feel great.
“The foyer in Mays Clinic has beautiful light for selfies,” says Josephine. “I always take a selfie with a big smile because every time I leave, I feel like a winner.”
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
MD Anderson knows how to deal with cancer.