Coping with Ovarian Cancer & Recurrence
- Virginia Lillye, 55, singer and battling stage 3 ovarian cancer, is facing a recurrence and exploring new treatment options, including radiotherapy, immunotherapy, and clinical trials.
- Recent scans revealed tumor progression, prompting her care team to consider advanced therapies like immunotherapy—an approach praised by Nobel laureate Dr. James Allison for its curative potential across multiple cancer types.
- Lillye was diagnosed with ovarian cancer in 2023 and has since undergone treatment, reached remission, and then recurrence, meaning her cancer returned after briefly beating the disease. She’s since restarted treatment.
- Ovarian cancer recurrence (cancer returning after initial treatment) happens in “almost 25 percent of cases with early-stage diseases and in more than 80 percent with more advanced stages,” according to research published in the “Gland Surgery” medical journal.
- Ovarian cancer doesn’t always present obvious symptoms until the cancer has already reached its late stages. The symptoms may include bloating, pelvic & abdominal pain, changes in bowel habits, nausea, and vomiting.
Ovarian cancer often begins in the fallopian tubes, where rogue cells migrate to the ovaries and form tumors. It’s a disease marked by high recurrence rates, especially in advanced stages. Lillye’s recent imaging scans revealed both progress and concern.
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“The tumor on my liver has increased in size from 9mm to 14mm (1.4cms). We are looking at doing radiotherapy to shrink the tumor. We just have to wait and see if it is big enough to actually do so,” Lillye explained.
With her previous chemotherapy regimen losing effectiveness, Lillye is now exploring clinical trials—an option that can offer access to promising treatments not yet FDA-approved. While trials bring hope, they also carry risks, including unknown side effects. Patients must consult their care teams to determine eligibility and fit.
WATCH: Clinical trials can be lifesaving.
Another option on the table: immunotherapy. This innovative treatment activates the body’s own immune system to detect and destroy cancer cells. SurvivorNet spoke with Nobel Prize-winning researcher Dr. James Allison, who pioneered checkpoint inhibitors—one of the most transformative breakthroughs in cancer care.
“I think that the most powerful combinations coming up are based on combining immune blockers or enhancers, but also drugs that can directly kill tumor cells to really have a double whammy,” Dr. Allison added.
“Immunotherapy is rather unique in that for the first time, we’re getting truly curative therapies in many kinds of disease—not just in melanoma but in lung cancer, kidney cancer, bladder cancer, Hodgkin’s lymphoma, Merkel cell cancer, head and neck cancer,” Dr. Allison told SurvivorNet.
For Lillye, the journey is far from linear. Like many ovarian cancer patients, she’s learning to live with uncertainty while holding fast to hope.
“Feels like a never-ending roundabout, but I’m sure the exit sign will appear soon,” she wrote. “Just keeping the focus on that glorious day and surrounding myself with love, positivity, sunshine, and good vibrations.”
Helping Patients Understand Treatment Options for Ovarian Cancer
Virginia’s Ongoing Cancer Journey
Lillye is a singer who has performed alongside legendary performers as part of KISS, Guns ‘N’ Roses, and more. Last summer, eagle-eyed fans noticed she wasn’t sharing photos and videos of her shows as frequently as she once did. Her dormancy stemmed from a stage 3 ovarian cancer diagnosis.
“You may have noticed the absence of posts related to gigs and shows,” Lillye said on Instagram.
WATCH: Ovarian cancer’s subtle symptoms.
Ovarian cancer has been called the “cancer that whispers” because women often don’t experience symptoms until their cancer has already reached its late stages. The symptoms that do appear at first are hard to identify as cancer.
“Ovarian cancer does not have any specific symptoms,” Dr. Beth Karlan, a gynecologic oncologist at UCLA Medical Center, told SurvivorNet.
The symptoms of ovarian cancer may include the following, according to SurvivorNet experts.
- A feeling of bloating or fullness
- Pain in the pelvis or abdomen
- Nausea
- Vomiting
- Changes in bowel habits
WATCH: Treating ovarian cancer.
“I have a long road of recovery ahead with round one of chemo ticked off already and am heading for round two,” Lillye said in July 2023.
Her treatment included multiple rounds of chemotherapy and a full hysterectomy.
A hysterectomy is a procedure that removes part or all of the uterus (or womb), often along with the cervix, according to the National Cancer Institute. Women who receive a diagnosis of uterine, ovarian, and cervical cancer may have their cancer treated with a hysterectomy.
Amid treatment, Lillye experienced hair loss. She remained in high spirits, fueled by her husband’s willingness to shave his head alongside her.
“The hair has fallen out, and my husband, being the amazing human that he is, has supportively shaved his locks off, too,” Lillye said.
After a challenging surgery and additional rounds of chemotherapy, Lillye said she felt herself getting stronger mentally.
The standard of care for ovarian cancer patients is chemotherapy, which helps many patients reach remission.
Ovarian cancer recurrence happens in “almost 25 percent of cases with early-stage diseases and in more than 80 percent with more advanced stages,” according to research published in the “Gland Surgery” medical journal. With recurrence a strong possibility for this disease, especially in the later stages of ovarian cancer, certain drug treatments to deal with it are giving many women hope.
Maintenance therapy is continued treatment after the patient finishes their initial treatment. After an ovarian cancer patient completes a round of treatments — such as surgery and chemotherapy — her doctor may recommend some form of maintenance therapy to try and delay possible recurrence. Maintenance therapy can involve taking an oral pill called a PARP inhibitor every day after chemotherapy and can keep cancer in remission longer.
Genetic testing helps doctors determine the best maintenance therapy.
WATCH: How your ovarian cancer responds to certain types of chemotherapies guides your future treatments.
At the start of 2024, Lillye received her last round of chemotherapy, or so she thought. A couple of months later, in March 2024, recurring CT scans detected something concerning.
“My recent CT scan has shown evidence of fluid in my left lung with thickening on the lining. What would normally be considered as not an issue, the fact that my CA125 blood level count has jumped from 13 to 74, has my team worried,” Lillye explained.
In the end, her care team told her she needed to restart chemotherapy.
“Back in the saddle for my target therapy,” Lillye said.
Lillye remains hopeful after undergoing two additional cycles of chemo; tests will no longer find any evidence of cancer.
What Happens During a Recurrence
When cancer returns, it is referred to as recurrence. It often occurs because some cancer cells are left behind after treatment. Those cells grow over time and are eventually detected in follow-up scans received by patients in remission.
Ovarian cancer patients faced with a recurrence will likely need to restart chemotherapy or consider another surgical procedure.
The type of treatment recommended for recurrence can depend on several factors:
- The period within which the cancer recurred
- The kind of chemotherapy the woman underwent in the past
- Side effects that came as a result of past treatments
- The length of time between the last treatment the woman underwent and the recurrence
- The specific mutations and molecular features of your cancer
If a woman’s time between remission and recurrence is more than six months, then the ovarian cancer is categorized as “platinum-sensitive” (that is, responsive to a platinum-based chemotherapy treatment), and that patient will be treated with chemotherapy and another platinum-based drug.
If the recurrence time happens less than six months into remission, the ovarian cancer is classified as “platinum-resistant.” At that point, women are usually treated with another type of chemotherapy and encouraged to enter a clinical trial. Alternatively, women might be platinum-refractory, which refers to a disease that grows while the patient is on chemotherapy and has a particularly poor prognosis.
Clinical trials are an option for women facing ovarian cancer with a high probability of recurrence. If you fall into this category, ask your doctor about possible clinical trial eligibility. Clinical trials help doctors better understand cancer and discover more effective treatment methods. They also allow patients to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.
Despite the great benefits of clinical trials, they also come with risks (like potential side effects that are not fully understood yet). People interested in participating in clinical trials must first talk with their doctor to see if they would be a good fit.
Determining the probability that a woman’s cancer will recur depends on the stage at which they were initially diagnosed. According to most data:
- Women with stage 1 ovarian cancer have a 10 percent chance of recurrence.
- Women in stage 2 have a 30 percent chance of recurrence.
- Women in stage 3 have a 70 to 90 percent chance of recurrence.
- Women in stage 4 have a 90 to 95 percent chance of recurrence.
Questions for Your Doctor
If you have been diagnosed with ovarian cancer and need guidance to further educate yourself on the disease and treatment, consider these questions for your doctor.
- What type of ovarian cancer do I have?
- What stage is my cancer in?
- Do you recommend I get genetic testing for any gene mutations, such as the BRCA gene mutation?
- What initial treatment options do you recommend?
- What are the possible side effects of the recommended treatment, and how can they be coped with?
- Will insurance help cover my recommended treatment?
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