The 25-year-old’s pain was ignored by the doctor. It was ovarian cancer
One day, Emma Schlamm, 25, felt unusual pain in her left side. She didn’t feel menstrual cramps, so she visited her doctor to learn more. A scan revealed a mass that was later removed along with her ovary. While she was concerned about the growth and potential loss of her fertility, doctors told her it was a “borderline tumor” and that she need not worry.
“They made it seem like, ‘You’re okay.’ You’re really okay. They told me to calm down when I cried. They really tried to play down the emotions,” the 29-year-old from Newport Beach, Calif., told TODAY.com “I felt incredibly rejected.” A year later, a routine scan found another tumor, and she was diagnosed with ovarian cancer. She was devastated.
“Cancer wasn’t on my radar enough, and if it had been, I think I would have paid more,” she says. “There is no screening tool for ovarian cancer, but there are some things that can help in my case.”
Unusual pain eventually leads to a diagnosis
When Schlamm first experienced pain in her left side, she visited several doctors before undergoing a screening test that found a mass growing on her ovary. At first, doctors didn’t think it needed to be removed, but she felt anxious about it.
“I pushed and pushed and pushed because I was feeling anxious,” she says. “(I didn’t) like the idea of having anything growing in my body that wasn’t supposed to be there.”
Finally, they decided to have surgery but faced complications. The mass was attached to her ovary.
“There was no way to just remove the mass. They had to take the entire ovary out,” says Schlamm. “I was very concerned about the effects it might have on fertility.”
It was about a year ago, and she was visiting her family in New York when she decided to see a doctor for an examination and an X-ray. She couldn’t believe the results.
“They saw a tumor in the other ovary,” she says. “It was low-grade serous ovarian cancer, meaning it started growing in the serous membrane of the ovary. It was also stage two and had spread to other parts of her pelvis.
A cancer diagnosis was stressful for her and her family.
“There was no way I could have cancer when I was 25,” she remembers thinking. “I blacked out for most of the conversation. I don’t remember much of it. I’ve never heard my mother cry like that before, the kind of primal scream she made.”
As Shallam and her family struggled with the grief of the diagnosis, they visited three cancer centers to develop a treatment plan. I felt overwhelmed by the treatment options and potential outcomes.
“It basically took until someone at Dana-Farber Cancer Institute said to me, ‘If you were my daughter, this is what I would ask you to do,’ and this is what I needed,” she says. “I needed that level of compassion for them to look at me like I was their daughter and not like any other patient.”
Schlamm froze her eggs before starting cancer treatment. Doctors told her that chemotherapy had only a 15% chance of putting her into remission. However, I decided to pursue it.
“I wanted to do everything I could to make it happen,” she says. “I was so desperate and so prepared, and there are so few (treatment) options for this type of cancer.”
Schlamm underwent 18 rounds of chemotherapy and surgery to remove the remaining ovary. She now takes an aromatase inhibitor, a medication that lowers estrogen levels and is typically used to reduce the risk of breast cancer in postmenopausal women.
While she responded well to treatments, she faced a lot of emotions due to her stage 2 cancer diagnosis.
“Dealing with menopause at 25 is not fun. “It’s brutal,” she says. “A lot of my grief has come from feeling like I’ve lost my youth and vitality not only because of the chemotherapy but also because of the medication I’m on and will be on for the foreseeable future.”
The medication causes osteoporosis, and now Schlamm is worried about falling and hurting herself. Last year, her husband hugged her and she broke a rib.
“I feel like I’m 100 years old inside this body, which is confusing because I want to live,” she says. “I’m 29 now and I want to feel 29.”
Low-grade serous ovarian cancer
According to the Ovarian Cancer Research Alliance, high-grade cancers are the most common type of ovarian cancer. Low-grade serous ovarian cancer often grows more slowly than other types of ovarian cancer, but it usually goes undetected in the early stages, in part because it has few symptoms. There is also no screening test available.
“Low-grade (serous ovarian cancer) is a subtype of ovarian cancer,” Nicole Andrews, MD, chair of the STAAR Ovarian Cancer Foundation, tells TODAY.com. “Studies are now being done to understand this type of cancer because it is rare.”
This type of cancer occurs more often in younger women, says Andrews, who also had low-grade serous ovarian cancer.
“We have all these 20- to 30-year-olds getting ovarian cancer, and it’s a big shock because they get it in the later stages,” she says. “Their doctors didn’t even think about the possibility of ovarian cancer.”
Conventional cancer treatments don’t work well on these types of cancer, according to the University of Chicago Medicine, so many women with low-grade serous ovarian cancer experience a recurrence of the disease.
Like any cancer, detecting it early improves outcomes. But ovarian cancer is difficult to detect, in part because it doesn’t cause many symptoms, and few of them resemble those of other conditions, such as fibroids or endometriosis. What’s more, Andrews says, doctors sometimes ignore patients’ symptoms.
However, if you experience any of the following symptoms, which may indicate ovarian cancer, talk to your doctor, Andrews says:
- Back ache
- Irregular menstrual cycles
- Feeling full quickly
- Bowel changes
- Pain during sex
- frequent urination
A recent survey of patients with low-grade serous ovarian cancer by the STAAR Ovarian Cancer Foundation and the drug company Verastem Oncology found that few women knew the warning signs or about the cancer itself.
“Does more need to be done to educate? Absolutely,” says Andrews.
The survey asked participants whether their doctors had ignored their symptoms or concerns, and many said yes. Andrews adds that it’s important for women who have symptoms of ovarian cancer to advocate for themselves to their doctors.
It took 18 months for Andrews to be diagnosed. Her initial symptoms were indigestion and doctors conducted an examination, but the results were normal. Eventually, an ultrasound revealed what doctors initially thought was a “complicated cyst.” It was the cancer that was spreading.
“During the pandemic, I started feeling bloated, and I looked nine months pregnant,” she says. “I couldn’t get across town — I live in Houston — without having to go to the bathroom.”
While the pandemic-induced lockdown delayed her testing, she was eventually diagnosed with low-grade, stage III serous ovarian cancer, which doctors treated with surgical removal of her uterus, ovaries and fallopian tubes as well as chemotherapy and an aromatase inhibitor.
This experience taught Andrews how little many women know about their bodies and ovarian cancer.
“I have cancer and it will likely come back,” she says. “In the meantime, I’m sure I will fight, no matter what, to make a difference.”
Make a difference
Schlamm and her husband enjoy visiting farmers markets, walking on the beach, trying new foods, and traveling. While she sometimes struggles with her health, she focuses on enjoying life and educating others. Before joining STAAR as a board member, she worked in reproductive health education. She believes that helped her experience.
“My career has been literally working with young people to advocate for their health,” she says. “I told myself I need to take my own advice, like this is what I want a 14-year-old girl in Fresno that I work with to do. I should do the same thing.”
Right now, there is no evidence of disease, but Schlamm worries every time she has a scan.
“That’s the hardest part of all this, living with the fear of recurrence because the numbers are so overwhelming,” she says. “I try to do what I can, stay active and healthy. It makes me feel like I have some control over my body.”
Schlamm hopes her story will raise awareness of low-grade serous ovarian cancer.
“I hope people see me (and) my age and say, ‘This is what ovarian cancer can look like,’” she says. “This is not your grandmother’s ovarian cancer. Don’t write it. Don’t reject him.”