Dr. Kevin Holcomb, MD

“I don’t understand why there isn’t a test to pick this up earlier! I just saw my gynecologist 6 months ago.” I often hear questions like this from distraught women who have just been given a new diagnosis of advanced stage ovarian cancer. I understand their profound frustration. One day they are feeling relatively well and the next they find themselves battling the most aggressive gynecologic cancer.

If ever there was a cancer in need of an effective screen, its ovarian cancer. Consider these facts; approximately 20,000 new cases of ovarian cancer are diagnosed each year in the United States and approximately 16,000 deaths are attributed to the disease. The 5- year survival rate for patients diagnosed with cancer confined to the ovary is over 90% but drops to 25-30% for women whose disease has spread to the upper abdomen or distant sites. The problem with ovarian cancer is that the vast majority of newly diagnosed patients are found with disease that has already spread. An effective screening test would shift diagnosis towards the early stages and would thus result in a significant improvement in measurements of survival. This is what the Pap smear did for cervical cancer and mammography did for breast cancer. So why is there no effective screen for ovarian cancer?

Unfortunately our knowledge of the mechanisms and timing of how ovarian cancer spreads is limited. It is possible that in some patients with advanced ovarian cancer, the disease started in the ovary and other sites simultaneously. Screening would be of limited benefit in such a patient because she never had an “early stage.” It has also proven difficult to find screening tests with sufficient sensitivity to detect small volumes of ovarian cancer while limiting false-positives.

Studies are in progress to identify a single test or combination of tests that can be offered to women, as part of routine examinations, that will improve the survival rate in ovarian cancer. Most of these studies have involved a combination of serial pelvic sonograms and blood tests that can detect early ovarian cancer. The most extensively studied blood test is CA-125.  CA-125 is a protein found at elevated levels in the blood of 75% women with ovarian cancer. Unfortunately, those levels can also be elevated in cases of a number of common benign disorders such as uterine fibroids and pelvic endometriosis, thereby increasing the possibility of false-positives.  A large randomized trial sponsored by the National Cancer Institute to examine the efficacy of screening for ovarian cancer with pelvic sonogram and CA-125 blood tests is underway. Over 38,000 women were screened with the combination and only 20 invasive ovarian cancers were detected. Many of these cancers were found to be at an advanced stage, reducing the likelihood of a survival benefit.  Only 1% of women with an abnormal sonogram, 3.5 % of women with an abnormal CA 125 level and 23% of women with both tests abnormal were ultimately diagnosed with ovarian cancer.

While survival data comparing screened and unscreened women is still pending, the recommendation against routine ovarian cancer screening in women at average risk remains unchanged for now. The search goes on for alternative approaches, such as novel tumor markers to be used in conjunction with CA-125.

Until the development of an effective screen for ovarian cancer, it is important that patients and their physicians are sensitive to the ways that ovarian cancer expresses itself symptomatically.  It is not the silent disease we once believed it to be. Recent studies have shown that many women diagnosed with advanced stage ovarian cancer had symptoms of the disease in the months preceding their diagnosis. These symptoms, often vague and nonspecific, include abdominal bloating, crampy abdominal pain, an inability to eat as much as usual, as well as changes in bowel and bladder habits such as constipation or urinary frequency. Often patients have a constellation of these symptoms but the possibility of ovarian cancer is not considered and diagnostic tests such as pelvic sonograms are delayed. The majority of women with these symptoms do not have ovarian cancer, but for the small minority that do early detection may be the difference between life and death. So listen to your body closely because while ovarian cancer will speak to you, often it whispers.

Dr. Kevin Holcomb, MD, is presently an associate professor of clinical obstetrics and gynecology at the Weill Medical College of Cornell University as well as a member of the division of gynecologic oncology at New York Presbyterian Hospital. Named one of America’s Leading Doctors by Black Enterprise in 2009, he has a strong clinical interest in the role of laparoscopic and robotic surgery in gynecologic oncology and has contributed to the literature regarding the treatment of locally advanced cervical cancer and pre-invasive cervical lesions in HIV-positive women.

The Facts

– Occurs in 1 in 72 women

– About 10% of ovarian cancer cases are related to genetic mutations which can be passed down from the mother’s or father’s genetics, so men can be tested for the BRCA1 or 2 mutations.

– About 68% of women diagnosed are age 55 or older; almost 32% of women diagnosed are age 54 or younger

– While ovarian cancer risk increases with age, people as young as 6 years old are diagnosed with the disease

– Early detection improves survival rates

– Causes symptoms, even in early stages

– There is no general screening test for ovarian cancer.

Symptoms

See a doctor if symptoms persist daily for more than a couple of weeks.

– Bloating

– Pelvic or abdominal pain

– Difficulty eating or feeling full quickly

– Urgent or frequent urination

– Fatigue

Non-exclusive Ovarian Cancer Symptoms

– Indigestion

– Painful intercourse

– Back pain

– Constipation

– Menstrual irregularities

The Risks Indicators

– Personal or family history of breast, colon, or ovarian cancer or genetic mutation of the BRCA1 or BRCA2 genes; The Ovarian Cancer National Alliance recommends that people talk to a genetic counselor to go over the risks and usefulness of genetic testing

– Have had difficulty getting pregnant or never given birth

Early Detection

–There is currently no routine screening test that exists for ovarian cancer. The Pap test does not screen for ovarian cancer; it screens for cervical cancer and infections. The three methods for screening ovarian cancer are as follows:

–CA-125 blood test—CA-125 is a protein found in greater concentration in cancerous cells. The test is used to evaluate the disease’s progress and tumor response in patients undergoing treatment, and to monitor the levels of CA-125 in women in remission for disease recurrence.

–Transvaginal ultrasound—The ultrasound is used to examine a woman’s reproductive organs including the vagina, uterus, fallopian tubes, and bladder. This is done by inserting a probe into the woman’s vagina. The probe sends off sound waves which reflect off of body structures. The waves are then received by a computer that turns them into a picture the doctor can examine.

–Manual Pelvic or Rectum exam—A doctor places one or two fingers into a woman’s vagina or rectum and another over her abdomen to feel the size, shape, and position of the ovaries and uterus. Ovarian cancer is usually in an advanced stage if it is found during a pelvic exam.

After Diagnosed
1. See a gynecologic oncologist for consultation
2. Immediately, move onto treatment, which is usually aggressive surgery called debulking
3. Chemotherapy usually follows surgery

Support Once Diagnosed

– Decide how you are going to tell your friends and family. Make careful decisions how you tell young children about your cancer.

– Learn and talk (with friends or family) about the possible emotional and physical changes the cancer can cause to prepare yourself and accept the changes

– Seek out cancer support groups so that you have those group of people you can turn to for advice and needed discussions

– Talk to your employer about any accommodations you may need during or after your treatments.

– Get a family member or friend to be your support system. Being diagnosed with cancer can be very overwhelming so have someone with you at doctor’s appointments taking notes and helping you keep up with the information the doctor is providing. Have someone learn about the disease along with you.

– Try Websites such as www.caringbridge.org, which allows people to create a personal Web page to connect with loved ones during treatment. Or www.sharethecare.org which allows loved ones and friends to organize ways to help you through your daily life while dealing with cancer.

Reducing Risk
Stay informed about the new research, treatment, and diagnosis methods that arise if you are highly at risk.

Informative Websites

–Ovarian Cancer National Alliance provides news, resource, and general information about ovarian cancer

–The National Cancer Institute

–American Cancer Society

–Women’s Cancer Network of the Gynecologic Cancer Foundation can help people connect with doctors

–Facing Our Risk of Cancer (FORCE)

–The National Ovarian Cancer Coalition

–Ovarian Cancer Research Fund raises money and provides information about funding for ovarian cancer research

Discussion and Support Resources for Patients, their loved ones, and Caregivers

The Ovarian Cancer National Alliance Support Community

Association of Cancer Online Resources, an ovarian cancer list serve that gives many people support and insight

September is Ovarian Cancer Awareness Month. Find out more information at some of the above Websites and at www.ovariancancerawareness.org

Source: Ovarian Cancer National Alliance

Resources:
For more on Ovarian Cancer, see “When the Killer Is Not So Silent”

Presidential Proclamation: National Ovarian Cancer Month

This article originally appeared in the September 2009 issue of Black Enterprise magazine.

Garcia

The best and worst thing about cancer is life is never the same after you’ve been diagnosed. For me, being healthy used to mean fitting in a lunchtime workout at the gym, but these days, I measure my progress by blood tests and CT scan results. Hearing my doctor utter three mundane words, “Everything looks good,” is like winning a victory lap—the result of enduring dozens of inch-long needles that have ruined my veins, the impending nausea, and the countless days I was too sick to get out of bed.

But somewhere along the way, through the fear, tears, anger, pain, and dizzying realization of my mortality, I shed the vestiges of those overwhelming emotions like a snake sloughs its skin and emerged a winner—a survivor. How I arrived here is a lesson in self-advocacy.

In February of 2008, after suffering weeks of indigestion and bloating, I started seeing a gastroenterologist. Because I celebrated Christmas and New Year’s in Mexico, I thought perhaps I had eaten too many roadside tacos or accidentally drunk the water.

When a prescription for heartburn did little to combat my symptoms by late March, my doctor ordered an ultrasound to determine why I was losing weight while my bloating continued to worsen. He called me when the test revealed two large masses on my ovaries. “One is the size of a softball,” he said, concerned. “You need to get on your gynecologist’s surgery schedule today.”

Panic instantly set in, but when I spoke to my GYN, she thought a cyst she had found on my right ovary years before had simply grown and needed to be removed. She promised to follow up with me when she returned from vacation a week later. I recall her casual response: “Your chances of having ovarian cancer are low.”

Her nonchalance was unsettling, and I insisted on getting answers immediately. I called her office at least five times a day while she was away. I don’t know what I expected her staff to do, but my daily harassment finally prompted the nurse practitioner to administer a CA-125 blood test, which measures the concentration of CA-125, a protein present in malignant tumors. CA-125 is found in greater concentration in ovarian cancer cells and has become one of the more reliable ways to identify and monitor the status of ovarian cancer.

Resources:

Ovarian Cancer Risks & Figures

Presidential Proclamation: National Ovarian Cancer Month

Garcia and her father

Within a week of taking the test, I was diagnosed with ovarian cancer, stage III C––cancer was in both ovaries and had spread to the lymph nodes, and deposits of cancer were seen in my abdomen. Anything beyond stage II is considered advanced. At stage IV, the most advanced phase of ovarian cancer, the disease has usually spread to other organs. At first, I was in disbelief, then shock. After speaking with my surgeon about plans to undergo a full hysterectomy and learning this would make it impossible for me to have children of my own, an overwhelming sadness set in. It’s one thing to choose not to have children; it’s another to have the choice taken from you. To make matters worse, my boyfriend and I had recently been discussing starting a family. Like most women, I envisioned the baby I would carry in my belly and the family we would have together. That’s when my sadness turned into anger.

I wasn’t supposed to be a statistic of ovarian cancer. This is a disease that primarily affects white women over the age of 50. As a 33-year-old black woman, I didn’t fit the bill. I’m an example of what happens when the medical community engages in age- and race-based biases. I don’t think it occurred to my gynecologist, who’s also a young black woman, that ovarian cancer could happen to me.

Raising Awareness Through An Alliance
After an aggressive surgery—called radical debulking—that included a full hysterectomy to remove my tumors, as well as the removal of one of my lymph nodes, I underwent eight rounds of chemotherapy, dropped 25 pounds, and lost all my hair. My treatment regimen was tough. Each cycle included three drugs, given over two weeks, twice a month. The combination fatigued me, but I forced myself to get out of the house. I had no plans to let cancer get the best of me. I walked around my neighborhood, visited my friends and family, and looked forward to the day when I would feel like my old self again. I was determined to fight through all the physical, emotional, and psychological anguish of this beast and to help other unlikely victims become better advocates for their health.

A rare disease, ovarian cancer accounts for about 3% of all cancer diagnoses, but is the fifth leading cause of cancer-related deaths among American women. It’s relatively uncommon in the black community, but as is the case with most cancers, it’s more deadly when it affects us. Black women are often diagnosed in the disease’s later stages and are twice as likely as white women to die from it. With an overall five-year survival rate of 46%, it’s easy to see why the outcomes are more often than not unfavorable.

However, the more research I did, the more women I uncovered beating the odds––such as Barbara Mason, an 18-year survivor from South Carolina; Mary Jackson Scroggins, a 12-year survivor from New York; Kia Riddick-Taylor, a casting director in Florida who has been cancer-free for just over one year; and Sophia Carre, a seven-year survivor in Washington, D.C. These women all had stories like mine. They all sought treatment for seemingly innocuous conditions: bloating, digestive problems, and sudden weight loss or gain––all classic symptoms of ovarian cancer.
This disease has been mistakenly referred to as a “silent killer” because it was once thought to be asymptomatic. But doctors are now realizing that most ovarian cancer patients suffer from gastrointestinal problems at some point before their diagnoses.

Garcia and family members

Weighing Treatment Options
Making headway in the fight to cure this disease has been slow. Less than 20% of all cases are found in stage I, but with advances in research and treatment options, doctors and clinicians are encouraged.

“[Over the years] there has been increasing evidence that radical debulking is associated with improved survival of patients with advanced ovarian cancer,” says Dr. Kevin Holcomb, associate professor of clinical obstetrics and gynecology at the Weill Medical College of Cornell University and one of black enterprise’s leading doctors (see “America’s Leading Doctors,” May 2008). “It’s important for women with ovarian cancer to seek out doctors who have experience in treating the disease.”

There is some promising research with the medical drug thalidomide, which was used during the 1950s to treat insomnia and a host of other ailments, but was known to cause severe birth defects. Dr. Levi Downs Jr., a leading researcher at the Masonic Cancer Center at the University of Minnesota, has been at the forefront of this clinical trial effectively using thalidomide in tandem with chemotherapy to treat patients whose cancer is recurrent—about 70% to 90% of all ovarian cancer cases. According to Downs, 30% of his patients have seen a complete response, meaning their cancer “went away.” Others he’s treated are showing longer cancer-free periods.

The medical community has also seen significant improvements among patients with ovarian cancer who are treated with intraperitoneal, or IP, therapy, in which chemotherapy drugs are delivered directly into the abdomen. Dr. Carol Brown, gynecologic oncologist and associate attending surgeon at Memorial Sloan-Kettering Cancer Center in New York City, and another of be’s leading doctors, says, over the last few years, IP has become standard care for some ovarian cancer patients and has been shown to improve survival rates. Other drugs such as Avastin, commonly called a “smart bomb” drug because it cuts off the blood supply to cancerous tumors, are also improving the outlook for many patients.

Of equal importance is a patient’s personal vigilance: paying attention to your body, making sure you keep regular checkups, asking your doctor questions, seeking a second or third opinion, and speaking up when you suspect something is wrong. Personal vigilance is the most important lesson I learned from this experience. Had I not pressured the staff at my GYN’s office, my prognosis could have been fatal.

Fortunately, my pathology came back better than expected and I was diagnosed with a borderline tumor, which is a low-malignant form of the disease. I’m still undergoing treatment, but I’m on the road to recovery.

When I need a bit of encouragement to get through a tough day, I turn to the community of ovarian cancer survivors and our advocates who’ve become like my second family. An unfortunate circumstance may have brought us together, but it gave us a voice to inspire change and promote awareness.

Chana Garcia is a journalist in New York City who writes about cancer awareness and women’s health issues. For more information, visit her blog at blackgyrlcancerslayer.wordpress.com or follow Garcia on Twitter.com/garciagyrl.

Resources:

Ovarian Cancer Risks & Figures

Presidential Proclamation: National Ovarian Cancer Month

This article originally appeared in the September 2009 issue of Black Enterprise magazine.

Women are often diagnosed with ovarian cancer when it is already at an advanced stage. This problem can be attributed to a lack of effective early detection technologies and minimal or no specific symptoms associated with the disease. By learning more about risk factors and maintaining regular physician consultations, women have their best chance of early detection of ovarian cancer.

Science continues to expand our knowledge about this illness, promising hope to those who, years ago, would be without it. Through dedicated research, treatment outcomes have improved for many, and we are building a foundation for the development of evidence-based screening, which can help diagnose the disease at the earliest possible stage when the likelihood of cure is high.

This month we recommit to supporting the women who continue to battle valiantly against this malady as well as all families who are affected. National Ovarian Cancer Awareness Month helps educate women and men about the importance of knowing common signs and symptoms, scheduling routine doctor visits, and continuing robust scientific research. As a Nation, we are united in our resolve to reduce incidence and improve the lives of all those affected.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and laws of the United States, do hereby proclaim September 2009 as National Ovarian Cancer Awareness Month. I encourage citizens, Government agencies, private businesses, nonprofit organizations, and other interested groups to join in activities that will increase awareness of what Americans can do to prevent and control ovarian cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of August, in the year of our Lord two thousand nine, and of the Independence of the United States of America the two hundred and thirty-fourth.

BARACK OBAMA

For more on Ovarian Cancer, see “When the Killer Is Not So Silent” | Ovarian Cancer Risks & Figures