Why is ovarian cancer so deadly?

One of the major issues with successfully treating ovarian cancer is how late it is typically diagnosed: stage 3C. At that point, the cancer has spread throughout the abdomen. Typically, it also has spread throughout the omentum, or the tissue that surrounds the abdominal organs.

As with many cancers, the five-year survival for ovarian cancer drops when it is diagnosed later. Caught at an early stage, the five-year survival rate is 70% to 90%. Caught late, the five-year survival rate drops to 20% to 30%.

Who is at risk for ovarian cancer?

While there is no way to know for sure if someone is going to get ovarian cancer, there are some risk factors that may contribute to the onset of the disease, including:

• Being middle-aged or older
• Having close family members (such as your mother, sister, aunt or grandmother) on either your mother’s or your father’s side, who have had ovarian cancer
• Having a genetic mutation (change) called BRCA1 or BRCA2, or one associated with Lynch syndrome
• Having had breast, uterine or colorectal (colon) cancer
• Having an Eastern European or Ashkenazi Jewish background
• Have or have had endometriosis (a condition where tissue from the lining of the uterus grows elsewhere in the body)
• Having never given birth or have had trouble getting pregnant

There are other indicators of risk. Transvaginal ultrasound (TVUS) can show free fluid in the abdomen. Free fluid can be a sign of ascites, which is a typical symptom of advanced ovarian cancer.

How is ovarian cancer diagnosed?

The two tests used most often (in addition to a complete pelvic exam) to screen for ovarian cancer are TVUS and the CA-125 blood test.

TVUS uses sound waves to look at the uterus, fallopian tubes and ovaries by putting an ultrasound wand into the vagina. TVUS can see if there is a tumor or growth in the ovary, but there is no way to tell if the tumor is cancer or is benign (noncancerous), and can lead to a false positive.

The CA-125 blood test measures the amount of a protein called CA-125 in the blood. Many women with ovarian cancer have high levels of CA-125. This test can be useful in guiding treatment in women known to have ovarian cancer, because a high level of this protein often goes down if treatment is working. The drawback of this test is that there are other conditions that cause high CA-125, such as endometriosis, liver cirrhosis or pelvic inflammatory disease.

How is ovarian cancer treated?

Standard treatment is a combination of debulking surgery and chemotherapy. “Debulking” means removing as much cancer as possible, including removal of the ovaries, uterus, cervix, fallopian tubes, omentum, lymph nodes and any other tissues that may be cancerous. Surgery is paired with six rounds of chemotherapy. The disease usually responds well initially, but the cancer will recur in more than 80% of these cases. 

Using transvaginal ultrasound screening for ovarian cancer

Since 1987, the UK Markey Cancer Center Ovarian Cancer Screening Program has been screening women for signs of early ovarian cancer using transvaginal ultrasound. All women over 50 with no symptoms and women over 25 with no symptoms and a family history of ovarian cancer are eligible. 

Results of the screening trial showed that about 70% of women had benign growths or a very low risk for cancer. The key to accurate diagnosis lies in the other 30%.

The diagnostic accuracy of TVUS is improving, however, thanks to the Kentucky Morphology Index scoring system. The system uses the size and shape of the tumor to give a score ranging from 0 to 10. 

For those patients whose screening score is moderate or high, one important management option for OB/GYNs is to take a series of ultrasounds, repeated at one- to three-month intervals, to see if the growth is changing. If there is change over time, even if the risk is intermediate, then there’s a higher likelihood the cyst needs to be removed surgically. If it stays the same or becomes smaller, usually nothing needs to be done right away, and the cyst can be observed over time. 

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Stephanie Virgin was 29 and hoping to start a family, so ovarian cancer was the last thing on her mind — even when she experienced textbook symptoms.

The Louisville native chalked up her back pain to the high heels she wore to her work in real estate. She thought the need to urinate frequently was from all the water she drank, and she blamed the cramping, bloating and irregular periods on going off birth control. And then there was the heartburn, decreased appetite and fatigue.

When she almost passed out one morning in September 2014, her husband, Greg, insisted she go to the doctor. Her physician pressed on her belly and felt what he thought was a large ovarian cyst. An ultrasound showed something more ominous.

“When you get told you have cancer, you black out. … I literally froze,” Stephanie said.

Stephanie did not fit any of the risk groups. She was young. The average age of diagnosis is 63.

Also, she had no family history of breast or ovarian cancer, didn’t smoke, wasn’t overweight, did not have endometriosis and never had taken fertility medications.

Stephanie’s surgeon found cancer on both ovaries, fallopian tubes, uterus, cervix, bladder, ureter, omentum and colon. Her diagnosis: Stage 3 low-grade serous adenocarcinoma.

Stephanie went to see Lynn P. Parker, M.D., gynecologic oncologist with Norton Cancer Institute Women’s Cancer Center.

“Dr. Parker is big on research,” Stephanie said

The research showed patients who can tolerate an aggressive treatment (IV/IP chemotherapy) survive an additional 18 months on average.

“I felt like this was my best chance,” Stephanie said.

The inpatient chemotherapy was difficult. Stephanie was given Taxol intravenously, and the chemo drug cisplatin was injected directly into her abdomen, a procedure called intraperitoneal (IP) chemotherapy. The treatment caused the number of infection-fighting white blood cells called neutrophils to decrease to the point where Stephanie needed blood transfusions.

“That was tough,” she said. “Dr. Parker was always there to answer any question you had. When you talk to her, it’s like you’re her only patient. She doesn’t need to look at the chart to see who is this and what is this about.”

After 5 years, still under surveillance

After five years, Stephanie is being monitored closely and taking medication because of a high recurrence rate for ovarian cancer.

Stephanie speaks to third-year medical students about her experience and does other outreach to spread the word about ovarian cancer, which strikes 1 in every 88 women.

“I had almost every symptom,” Stephanie said.

Those symptoms, however, are relatively easy to ignore or blame on something else.

“Ovarian cancer is called the silent killer or the cancer that whispers,” Stephanie said.

Stephanie belongs to Ovarian Awareness of Kentucky (OAK) and tries to use social media such as Facebook and Instagram to let women know about ovarian cancer, especially younger women who may not think they are at risk.

She also tries to mentor young survivors through an Ovarian Cancer Young Survivors Facebook page she started, which has more than 500 members.

Stephanie is back at work, running First Saturday Real Estate with her husband.

‘Whatever it takes for you to be a mommy’

Because she had a radical hysterectomy, Stephanie knew she couldn’t have children.

“For me, one of the toughest things was the loss of my fertility. I went through a period of mourning,” Stephanie said. “I cried and told my husband, ‘We would have made such beautiful babies.’ My husband was amazing. He said, ‘We’re going to do whatever it takes for you to be a mommy.’”

Stephanie and Greg have since adopted biological brothers through the foster care system. The boys are now ages 7 and 3.

“We have two beautiful boys,” said Stephanie, who is passionate about her family and her work.

According to Stephanie, her cancer journey has changed her outlook. She now says yes to more experiences and risks.

High chance of recurrence

While Stephanie remained under close surveillance of Dr. Parker for several years while her cancer stayed at bay, she knew that 80% of patients diagnosed with epithelial ovarian cancer have it recur within five years.

In early 2020, after a routine colonoscopy, Stephanie had significant abdominal pain. Dr. Parker “jumped into action” and ordered labs.

After conducting bloodwork and undergoing MRI imaging, Stephanie had her worst fear confirmed — the cancer was back.

“Typically, once ovarian cancer recurs, it does not go away,” Stephanie said. “While we would love for me to be ‘no evidence of disease’ again, I have had to learn to be content with ‘stable’ disease.”

Stephanie credits her ability to gracefully navigate her cancer journey to Dr. Parker, whom she is “100% confident in,” as well as her ongoing work with the Norton Cancer Institute Behavioral Oncology Program.

Currently, Stephanie and Dr. Parker work together to review clinical trials and different treatment options and to explore genetic testing to help guide her treatment plan.

“When I meet with Dr. Parker, I know that I am being fully listened to, that she is up to date on all of the latest treatment options, that I am collaborating with her on my care and that she is going to show me the utmost compassion and respect,” Stephanie said. “Dr. Parker sets the bar for cancer care.”

Stephanie belongs to Ovarian Awareness of Kentucky, a support group, and tries to use social media such as Facebook and Instagram to let women know about ovarian cancer, especially younger women who may not think they are at risk.

She also tries to mentor young survivors through an Ovarian Cancer Young Survivors Facebook page she started, which has more than 500 members.

Signs and symptoms of ovarian cancer

Early-stage ovarian cancer seldom causes symptoms. Advanced-stage ovarian cancer may cause symptoms that often are mistaken for common benign symptoms.

Signs and symptoms of ovarian cancer may include:

• Abdominal bloating or swelling
• Quickly feeling full when eating
• Weight loss
• Discomfort in the pelvis area
• Changes in bowel habits, such as constipation
• A frequent need to urinate

Your doctor can review your family history with you. If you have relatives with ovarian cancer, you may want to meet with a genetic counselor to discuss testing for certain gene mutations that can increase your risk.

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“What drives me is we can cure people; we can help people. What drives me every day is to see patients do well,” said Dr. Parker, who trained at the world-renowned MD Anderson Cancer Center in Houston, Texas.

Rapid medical advances are improving the odds significantly for ovarian, uterine, cervical, endometrial and other cancers in the reproductive organs. Unfortunately, even some physicians may not know about many of the new treatments, according to Dr. Parker.

“We can be very successful,” she said. “It’s just a matter of making sure people are aware of the options they have and that our specialty exists. It’s a really exciting time in gynecologic oncology. I don’t want people to get misinformation that there’s not something that can be done to help them when there is.”

Getting the news to patients and primary care doctors alike

To that end, Dr. Parker is on the Communications Committee of the Society of Gynecologic Oncology, an international professional organization.

“We try to get the word out, either through social media or websites,” Dr. Parker said. “To me it’s not only about getting the word to the patients but to the primary care doctors.”

Dr. Parker recalled a patient who was told by her doctor to go home and get her affairs in order because nothing could be done. Dr. Parker saw the patient and started treatment.

“She lived another six years. She had six years with her kids that she otherwise would not have had,” Dr. Parker said.

As a gynecologic oncologist, Dr. Parker performs surgery and sees patients in the office.

Combining a love of science and caregiving

Dr. Parker grew up in a small town in southern Illinois, the daughter of a dentist. Her grandparents lived close by, and she helped care for her grandfather, who had rapidly progressing rheumatoid arthritis.

“I loved science. I loved caregiving. That was a way I could make an impact and help people,” she said.

Dr. Parker completed a combined six-year undergraduate and medical degree at the University of Missouri-Kansas City before doing her medical residency at the University of Oklahoma, Oklahoma City. She then completed a fellowship in gynecology/oncology at MD Anderson.

Dr. Parker is passionate about keeping up with research and what the latest treatments can do for patients.

“I have patients, in the old days, we would say you have nine to 12 months to live. Now I give them a new chemotherapy combination and the tumor goes away. To me that’s very exciting,” she said.

Applying rapid advancements in treatment

Other new treatments include immunotherapy, which uses a patient’s own immune system to fight cancer; PARP inhibitors, which kill cancer cells by stopping them from repairing themselves; and so-called VEGF (vascular endothelial growth factor)

drugs like bevacizumab, which starve tumors by preventing them from forming new blood vessels.

Research also has shown that most cancers that were once thought to arise in the ovary have their origin in the fallopian tubes, according to Dr. Parker. That means cancers potentially can be prevented. For example, if a woman is having a hysterectomy for reasons other than cancer, the fallopian tubes also can be removed.

Genetic testing also is improving, which will help pinpoint which women are most at risk.

“Now we can do very significant profile testing and potentially protect women from ever getting cancer,” Dr. Parker said. “I would love to go out of business for that reason.”

Even with an eye on the latest research, Dr. Parker never loses sight of her patients.

“My patients are amazing people,” Dr. Parker said. “I’m very proud my patients feel at home when they come see us. So much of that is lost in modern medicine. To me it’s about making patients feel like they’re part of a team, part of a family.

“Cancer is so overwhelming you want to know they can always reach you to talk to you. They can ask us all the questions they want. If I don’t know the answer, I will find someone who does.”

In medical school, Dr. Parker met her husband, John Parker, M.D., a neuropathologist who teaches medical students and neurosurgery residents at the University of Louisville School of Medicine. Together, they have a teenage daughter. In her free time, Dr. Lynn Parker likes spending time with her family and spending time outdoors.

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In February, he’ll be taking his surgical expertise to women in Chinandega, Nicaragua. Access to health care is an issue in the second poorest country in the Western Hemisphere.

“There are many women in Nicaragua who need help for gynecological issues,” said Dr. Doering, who is a gynecologic oncologist with Norton Cancer Institute and is also board certified in obstetrics and gynecology. “This includes fibroids, stress incontinence and pelvic organ prolapse.

“By providing my services as part of a mission trip, I hope to help women who otherwise would have to live with their symptoms.”

At Norton Women’s & Children’s Hospital, Dr. Doering is part of its designation as a Center of Excellence in Robotic Surgery and Center of Excellence in Minimally Invasive Gynecology. In Nicaragua, he’ll have to do things the “old school” way.

“In the United States we have access to the latest advancements for care,” Dr. Doering said. “If we’re lucky, we’ll have access [in Nicaragua] to some laparoscopy equipment for some minimally invasive techniques.

“If not, we’ll need to use other surgical approaches.”

Norton Healthcare is donating surgical instruments to assist his efforts.

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Completion is planned for February 2020, with two downtown campus locations getting a makeover.

Norton Cancer Institute – Downtown (676 S. Floyd St.)

• New clinics will serve patients with urgent care needs related to cancer, hepatitis C and sickle cell disease.
• Advanced radiation therapy services will continue to anchor the first floor.
• New multidisciplinary care space will be created for the Head, Neck and Skin Cancer Program and Comprehensive Lung Center.
• Current skin cancer resources will be expanded to include innovative new technology.
• A state-of-the-art oncology pharmacy and an expanded chemotherapy and infusion suite are being added to the third floor.

Norton Cancer Institute Women’s Cancer Center (234 E. Gray St.)

• The new women’s center on the first floor will include offices for gynecologic oncologist Lynn Parker, M.D. along with six large gynecologic oncology exam rooms.
• A new expressive art and music therapy suite will be located on the first floor.
• Offices for Norton Cancer Institute’s research program will occupy part of the second floor.
• A new central call and scheduling center, plus space for the financial services team, will be on floors five and six.
• Additional plans include a multidisciplinary breast health clinic led by medical oncologist Laila S. Agrawal, M.D.
• A designated pull-in valet area will facilitate quick service for those visiting for outpatient blood tests.

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