Ovarian Cancer Was Literally a Pain in the Neck -- Twice

During a routine workout, Erika Guay felt a popping sensation in her neck when she lifted weights overhead. What she thought might be a torn ligament turned out to be something life-threatening – stage 4 ovarian cancer. It had spread to her lymph nodes. She was only 43.

Now 48, after a recurrence of the disease, Ms. Guay is cancer-free. She attributes her good health to her own faith and strength, along with sophisticated care from a team of experts from Memorial Sloan Kettering Cancer Center in New York, where her first diagnosis was made, and Baptist Health Miami Cancer Institute, where she was treated the second time.

(Watch now: Erika Guay talks about being diagnosed with ovarian cancer and why she’s recommending genetic testing for her daughter. Video by Eduardo Morales.)

Approximately 20,000 women in the U.S. are diagnosed with ovarian cancer each year, according to the American Cancer Society. While it accounts for more deaths than any other cancer of the female reproductive system, advances in the past decade have led to significantly improved outcomes for patients.

Even between Ms. Guay’s first diagnosis in 2018 and her recurrence in 2020, treatment choices had expanded. “We now have immunotherapies and a new class of drugs called PARP inhibitors,” says John Diaz, M.D., chief of gynecologic oncology at Miami Cancer Institute. “And this year we had the first antibody drug conjugate approved for the treatment of recurrent ovarian cancer. It’s an exciting time in the management of this disease. We have a lot more options for our patients than we did in the past.”

John Diaz, M.D., chief of gynecologic oncology at Baptist Health Miami Cancer Institute

Called a “silent killer,” ovarian cancer often has few or subtle symptoms and there is no effective screening. “Patients may experience some abdominal discomfort or pelvic pain early on, but these are symptoms that many people experience,” Dr. Diaz says. “If the problems are persistent or they’re getting worse, you need to see your primary care doctor or gynecologist. It really takes a patient to be attuned to their body and a physician that’s listening to their patient to find this.”

Symptoms and risk factors

In addition to abdominal or pelvic pain, other symptoms may include:

·      Bloating

·      Back pain

·      Feeling full quickly when eating

·      Vaginal bleeding, particularly post-menopausal

·      More frequent or urgent urination

·      Constipation

Risk factors include aging (ovarian cancer is more common in women 60 and older), a family history of ovarian cancer, an inherited genetic mutation, being overweight, having endometriosis, taking hormone replacement therapy and never having been pregnant.

At first glance, Ms. Guay doesn’t seem to be a likely candidate for ovarian cancer. She is a mother and has always watched her diet and exercised, even running marathons, and had no immediate family history of cancer. Genetic testing, however, showed a BRCA gene mutation, which ups the risk of numerous types of cancer.

The genetic link

“It was discovered that it came from my dad’s side of the family,” she says. She has shared the results with her father and his children from a second marriage. So far, one half-sibling has been tested, and knows she has the genetic mutation. “It’s changed her life. She’s been much more diligent about her mammograms and ultrasound appointments. Because she at least has the knowledge, she’s able to act from a place of knowing.”

Ms. Guay says if she had realized before her diagnosis that she was BRCA-positive, she would have been more proactive, too. “I could have been more diligent about my own follow-ups versus just going to the doctor once a year to get a Pap smear and thinking everything was okay.”

Miami Cancer Institute offers a high-risk clinic for those with identified genetic mutations or other factors that put them at greatest risk for ovarian cancer. Those patients are put under active surveillance, which may include frequent ultrasound and mammography (many genetic mutations greatly increase the risk of breast cancer), and at a younger age than is typically recommended for women at low risk.

“We can work within a family to see if other members carry the gene,” Dr. Diaz says. “Additionally, we counsel these patients and talk about risk-reducing surgery, removing the potentially affected organ before a cancer starts.”

Ms. Guay says the plan is for her 14-year-old daughter to undergo genetic testing when she is 21 or soon after. “I’m a huge advocate of genetic testing at the right time.”

Treatment options

Living in New York City when she was first diagnosed, Ms. Guay went through chemotherapy and surgery at Memorial Sloane Kettering. Miami Cancer Institute is the only Florida center to be part of the Memorial Sloane Kettering Cancer Alliance, offering unique access to select clinical trials.

In 2020, Ms. Guay was back to her normal routine of working, being a mom and running when she felt a nodule in her neck again. Because she had moved to Delray Beach, doctors in New York referred her to Miami Cancer Institute and she was able to receive much of her care at the Institute’s Plantation location.

“The warmness of Miami Cancer Institute was something I had not experienced before,” Ms. Guay says. “We were in complete COVID lockdown but I always felt like there was someone to hold my hand, to comfort me. And Dr. Diaz was wonderful.”

“We took a multidisciplinary approach to her care,” Dr. Diaz says. Through a robotic procedure, he removed a lymph node in her pelvis and cancerous tissue and another physician removed the node in her neck. Then Ms. Guay had six rounds of chemotherapy.

During her treatment, she completed her MBA at the University of Miami, a goal she’d had for some time. “Every day is a gift,” she says. “My husband was amazing throughout this and together we came from a position of strength. We both felt we were going to be victorious.”

Using a PARP inhibitor for maintenance

Because of her BRCA status, after chemotherapy and as a maintenance regime, Ms. Guay was placed on a PARP inhibitor, a targeted therapy drug that inhibits the ability of cancer cells to repair themselves. For two years, she took the daily, oral medication.

The drug can have side effects and research has shown that most women receive the best benefit by being on the medication for 15 months to two years, Dr. Diaz says.

Ms. Guay will continue to receive regular imaging and follow-up care and has become an advocate for the greater awareness of gynecological cancers.

As for Dr. Diaz, he wants all women to be aware of the impact that healthy living, including minimizing environmental toxicities such as tobacco, lowering stress, eating right, exercising and, importantly being in tune with their bodies, can have.

“We want to be able to identify ovarian cancer early, when it’s potentially the most treatable,” he says. “You know your body best. And if you feel you aren’t being heard, find a physician who will listen to you.”