After two months of pelvic pain that doubled her over, frequent yeast infections, urinary tract infections and bloating, Catherine Saoud, then 22, learned that she had a 21-centimeter mass in her abdomen that was a rare ovarian cancer. While she felt shocked, she’s sharing her story to encourage women to listen to their bodies and seek help.
“The message a lot of women hear is that this is normal, this happens and you just need to suck it up,” the 23-year-old graduate student in Chicago told TODAY. “I just really wanted to share with people, especially women, that it’s OK to pay attention to your body and notice changes and ask questions that demand answers.”
Pain, infections, bloating
In March 2020, Saoud started experiencing a new kind of cramping.
“It wasn’t like your usual menstrual cramps,” she said. “This was very different. It felt like my muscles, my organs were inflamed and the pain would radiate.”
She also started experiencing recurrent yeast and urinary tract infections. And, her stomach was so distended that she worried.
“I also was extremely bloated. For me that was the most concerning symptom because it was so visible,” she said. “I looked pregnant and my stomach felt hard so the bloating wasn’t like the typical bloating.”
Eventually, the pain became so intense that she struggled to move.
“I couldn’t walk and I couldn’t stand up straight,” she said. “Going to the bathroom and getting food, those were the only ways I would be able to get out of bed ... I would be walking around hunched because the pain was so bad.”
Doctors treated her for the yeast infections and UTIs, but the infections never went away. Then the pandemic started and in-person appointments were halted. For two months, she didn’t improve no matter how many prescriptions and lifestyle changes doctors recommended via telemedicine.
“The doctors kept telling me the pain would go away,” Saoud said. “I pushed and pushed and pushed and they finally brought me in.”
A nurse at student health often called Saoud and helped her prepare to advocate for herself during doctors' visits. She had many pelvic examinations. At one point, they thought Saoud’s kidneys were failing. But after every exam, the doctors noticed how bloated she was.
“One of the doctors who performed an exam on me pushed on my stomach and I screamed out in pain, saying ‘That really hurts. I think something’s in there,’” she said.
Finally, she underwent an ultrasound. It soon became clear that the technician found something.
“One tech said that there was a mass, but she couldn’t tell what ovary it was on. She brought in another tech and then they brought in the radiologist to do his own imaging,” Saoud said. “I knew that this was serious.”
When she tried to learn more about it, they evaded her questions.
“I had asked how big the mass was and the tech looked at me and laughed and said, ‘Do you really want to know?’” she said.
A rare, large ovarian cancer
After that scan, Saoud met with an OB-GYN who told her that because of the mass’ size, 21 centimeters, she needed surgery and introduced her to an oncologist.
Saoud had her mom on speaker and that’s when the oncologist explained what had been plaguing Saoud.
“She got right to it. She told me she was pretty sure it was cancer,” Saoud said. “She knew right away looking at those images that something was wrong.”
Saoud received her diagnosis on May 7, a Thursday, and by Monday she had returned to have the mass removed. Her mom drove from Maryland to be in Chicago for the procedure.
“I had the weekend to prepare for potentially losing all of my reproductive organs,” she said. “I had a very short time to process what my future might look like.”
Her oncologist removed the large mass, her right ovary and right fallopian tube. While the tumor took up her entire pelvic cavity and pushed aside some organs, the cancer hadn’t spread. When the biopsy results returned, Saoud learned she had an ovarian germ cell tumor, which occurs when cancer forms in the ovary’s egg cells. According to the American Cancer Society germ cell tumors make up less than 2% of ovarian cancer diagnoses. Her tumor had hair and bone in it, too.
It can be hard to diagnose ovarian germ cell cancers as the most notable symptoms are:
- Swollen abdomen.
- Bleeding after menopause.
Saoud’s diagnosis was stage 1 cancer but considered the most aggressive type and likely to return.
“My oncologist said with the recent research that is available now that she feels confident surgery was enough,” she said.
Saoud had to undergo monthly blood draws and CT scans and pelvic exams every four months to see if the cancer has returned. But she’s been doing so well that she’s going to spread out some testing further at her doctor’s recommendation. She felt it was important to share her story to encourage others to care for themselves if something seems wrong.
“I do think that this is an important message that people need to hear about advocating for their health,” she said. “Ovarian cancer is so rare in younger women. My goal isn’t to freak women out about … ovarian cancer. It’s very much to just be aware of your body.”
But she knows it can be tough for many people especially when they’re dismissed.
“I was told that I wasn’t wiping myself properly using the bathroom. I was told that it was my soap … so those were the kinds of things I was getting, which seem very typical for younger women,” Saoud said. “It was very invalidating for me because I was bedridden for a long time and I felt very isolated and it felt to me that I wasn’t being taken seriously.”