Ovarian Cancer Diagnosis
In 2014, Alicia had been struggling with increased urination for several months and assumed she had a UTI. She visited her gynecologist and asked for antibiotics and a urine analysis just to make sure. However, the urine analysis came back negative for a UTI, leaving Alicia and her doctor without answers for her symptoms. She was then referred to a urologist for further evaluation and testing.
Alicia credits her urologist with saving her life. “She decided to do a scan and then within an hour, called and told me I needed to see a gynecologic oncologist immediately. I had masses on my ovaries,” Alicia says. The next week, Alicia was referred to an oncologist near her in Philadelphia who scheduled her for surgery to remove all the tumors and perform a hysterectomy.
Alicia, who had just turned fifty with a seven-year-old daughter at home, was a candidate for a more intense and toxic form of chemotherapy treatment, due to her younger age and higher level of physical health she was in prior to her diagnosis.
“My oncologist had originally estimated I had about a 4-5 year life expectancy with this type of cancer and that chemotherapy would give me another 18 months of time,” Alicia remembers. “I was willing to start this chemo even if it just gave me 18 more minutes with my daughter.”
Treatment & Cancer Recurrence
The chemotherapy treatment Alicia was put on involved being pumped with chemicals through ports in her abdomen and her chest over the course of eight hours. The chemo left Alicia feeling incredibly sick and bloated while her stomach worked overtime to absorb the poison intended to destroy the cancer cells. Unfortunately, 17 months after Alicia finished this treatment, she experienced a cancer recurrence and needed a second surgery to remove new tumors. This time, Alicia received a different kind of treatment, which prevented the cancer for about a year until it returned.
“Entering my third round of treatment for cancer, I was incredibly weak and had been through multiple doctors and care teams,” Alicia says. “I started off on a new medication and had terrible side effects, before making the decision to switch healthcare systems and doctors.” Alicia’s new oncologist recognized the toll chemotherapy had taken on her body and quality of life. He explained that she was living in a chronic disease phase with her cancer and told her to spend some time off medication recovering and enjoying life.
Finding a Clinical Trial
Six months after stopping the medication, Alicia’s cancer recurred for the fourth time in 2018. This time, her doctor recommended she participate in a clinical trial treatment specifically for ovarian cancer.
“Up until then, my chemotherapy had been standard of care treatment, but not specifically designed for ovarian cancer patients. The trial was also specifically for patients with my type of tumor mutation, BRCA negative and HRD positive. I was thrilled to be on a treatment that was targeted for me,” Alicia shares.
Prior to her diagnosis, Alicia worked in healthcare for a pharmaceutical company, so she was familiar with how clinical trials worked and didn’t feel the fear that some people have about participating. Alicia started the trial medication on November 26, 2018. Now four years later, she remains a part of the trial and has had no cancer recurrences.
The trial Alicia joined is still ongoing, now tracking her progress in remission to see how long this medication effectively treats her cancer. Even four years later, Alicia receives blood work monthly and is closely monitored by her doctors. Because her oncologist is about an hour away, she receives a stipend for travel and her medication is free.
“I’m incredibly lucky! The only long-term side effect I have from this medication is chronic fatigue which is something I’ve adapted to over time. I’ll take being tired if it means I’m alive,” Alicia says.
When deciding to participate in the clinical trial, Alicia was heavily supported by her close friends and family. “We all knew I had run out of standard of care options and the trial was my best chance for survival,” Alicia notes. However, there were some acquaintances in her life who didn’t understand clinical research and made negative comments about her participation. “Ultimately, for cancer, there isn’t a treatment out there that doesn’t have some sort of side effect. For me, I had peace of mind knowing my care team was watching me closely,” Alicia says.
Raising Awareness for Ovarian Cancer
Prior to her diagnosis, Alicia knew nothing about ovarian cancer. When she went to her gynecologist about having increased urination, she was never told it was a potential symptom and screened for the other symptoms she already had. Like Alicia, many ovarian cancer patients have increased urination, bloating, back pain, and stomach pain. “In my mind, there were separate reasons for all these symptoms and didn’t think to tie them together. I was angry after being diagnosed that I wasn’t informed about the warning signs for ovarian cancer by my doctors,” Alicia recalls.
Alicia’s advocacy work began with researching her own medical journey, focusing on the chemotherapy treatment she was starting. She hoped to find other patients online who she could learn from to prepare for this experience.
“I made a promise to myself, that once I had made it through chemotherapy, I was going to work to raise awareness and education to give back,” Alicia says.
After finishing chemotherapy, Alicia got involved with the National Ovarian Cancer Coalition (NOCC) and the hospital network she was with. She began speaking with gynecologists in that network, encouraging them to share information and education early on with patients.
“I view clinical trials as an opportunity and not something to fear,” Alicia says. Today, there are new cancer treatments now in clinical trial phases that are less toxic on the body and have fewer side effects. The medication Alicia takes has allowed her to keep her hair, something that most medicines and chemo will cause to fall out.