Making Noise Making Progress
Sometimes referred to as “the silent killer” because symptoms often don’t appear until the disease reaches an advanced stage, ovarian cancer is diagnosed in more than 20,000 women annually in the United States and results in almost 15,000 deaths in this country each year.1 Determined to improve these statistics—and provide hope for those facing a diagnosis—advocates, researchers, and clinicians are working hard to make their voices heard as they educate women about the disease and support research toward more-effective screening and treatment. Included in the pages ahead are some of the dedicated organizations and individuals who are breaking the silence and making a difference on the front lines.
Diagnosed with Ovarian Cancer?
By Debra Richardson, MD
Assistant Professor of Obstetrics and Gynecology at UT Southwestern
Read on for important treatment information.
Q: What types of treatment can women newly diagnosed with ovarian cancer expect to receive today?
A: Most women diagnosed with epithelial ovarian cancer will be treated with a combination of surgery followed by chemotherapy. For early stages this includes intravenous (IV) Paraplatin® (carboplatin) and Taxol® (paclitaxel). For women with more-advanced disease, treatment may include IV Paraplatin and Taxol, or Taxol and Platinol® (cisplatin) given intraperitoneally (into the abdomen). Several clinical trials are also available.
Q: What questions should women newly diagnosed ask their doctor about treatment?
A: They should ask what chemotherapy drugs are being given, how they are being administered, how many cycles of chemotherapy are planned, and what side effects they can expect. A woman should also ask if she qualifies for a clinical trial.
Q: What second-line therapies are available to women who do not respond to initial treatment or who have a recurrence?
A: In general, ovarian cancer is a chemo-responsive disease. In other words, there are many treatment options. When choosing a second-line therapy, the physician will consider how long a patient has been off chemotherapy, what side effects the woman experienced during her first-line chemotherapy, dosing schedule (how often the chemo needs to be given), the woman’s own preferences (for example regarding possible side effects like losing hair), and her current state of health.
Options for women who recur more than 12 months after completing initial chemotherapy are considered platinum sensitive and are commonly retreated with Paraplatin and Taxol or, more recently, Paraplatin and liposomal doxorubicin. Women who recur less than six months after completing chemotherapy are considered platinum resistant and are commonly treated with liposomal doxorubicin or Hycamtin® (topotecan). Women who recur between six and 12 months are often retreated with a platinum combination, like Paraplatin and Taxol or Paraplatin and liposomal doxorubicin. There are several other chemotherapy drugs, however, that have activity in women with recurrent ovarian cancer.
Q: What treatment-related questions should women who are facing a recurrence ask?
A: A woman should ask her doctor what the goals of therapy are, what treatment options are available, how often the treatments are administered, what the common side effects are and how they differ among the available options, and her prognosis. She should also ask if she qualifies for a clinical trial.
Q: What side effects can result from current treatments?
A: That depends on the chemotherapy drugs. In general, damage to bone marrow, including low white blood cell counts leading to an increased risk of infection, anemia, and low platelets. Although nausea and vomiting can occur, there are many good drugs to alleviate those symptoms. Many women may experience fatigue. In addition, side effects for Taxol include hair loss, neuropathy (tingling and numbness in the hands and feet), and constipation. Women who receive chemotherapy directly into the abdomen may also experience abdominal pain.
Q: Are there any new treatments in the pipeline that may be available soon?
A: One new treatment is Avastin® (bevacizumab), a biologic agent that targets the cancer’s ability to make new blood vessels. While many women with ovarian cancer are being treated with this drug, it is not yet approved by the US Food and Drug Administration for the treatment of ovarian cancer. Most women receiving this treatment are either on a clinical trial or have recurrent ovarian cancer. An exciting new class of drugs that is currently being investigated is poly (ADP-ribose) polymerase (PARP) inhibitors, which interfere with a cell’s ability to repair DNA damage, leading to cell death. Many other drugs are being investigated to help women with ovarian cancer.
Debra Richardson, MD, is an assistant professor of obstetrics and gynecology at UT Southwestern. After graduating from the University of Virginia with a major in biology, she received her medical degree from New York Medical College and completed residency training at the University of Connecticut School of Medicine. Before pursuing fellowship training in gynecologic oncology at the Ohio State University College of Medicine, Dr. Richardson spent a year at the Mayo School of Graduate Medical Education, completing a women’s health fellowship. She was also awarded a certificate in Clinical and Translational Science from the Mayo Clinic. Board certified in obstetrics and gynecology, Dr. Richardson specializes in the use of minimally invasive and robotic surgical techniques in the treatment of endometrial and cervical cancer as well as other gynecological malignancies. She also participates in cancer treatment protocols developed by the National Cancer Institute’s Gynecologic Oncology Group. Dr. Richardson has published several papers on ovarian cancer, including the treatment of recurrent ovarian cancer.
National Ovarian Cancer Coalition
Where do you go when you’re first delivered the news “You have cancer”? For many women diagnosed with ovarian cancer, the answer is the National Ovarian Cancer Coalition (NOCC). With approximately 30 chapters nationwide, educational booklets, a toll-free help line, and a website (www.ovarian.org) that includes ovarian cancer news and information, the organization is prepared to deliver education, support, and resources to women facing ovarian cancer. But, says Chief Executive Officer David Barley, the most important thing the NOCC offers may be something less tangible: “Perhaps one of the most valued services of all is the hope we provide. Women can connect with others who have the same diagnosis with similar stories. They learn not to lose hope and to keep on fighting.”
Since its inception in 1995, the NOCC has been committed to raising awareness of ovarian cancer in communities across the country and to providing education, support, and hope for women with ovarian cancer and their families. Through “Break the Silence” programs designed to increase awareness and “There is Hope” programs for survivors, the NOCC has established itself as an important national advocate for patients and families struggling with ovarian cancer.
More than 20,000 women in the United States are diagnosed with ovarian cancer each year, and almost 15,000 women die annually from the disease. Unfortunately, most cases are diagnosed in their later stages when the prognosis is poor. If diagnosed and treated early, when the cancer is confined to the ovary, however, the five-year survival rate is more than 90 percent. That is why it is imperative that the early signs and symptoms of the disease are recognized, not only by women but also by their families and the medical community.
There is currently no early-detection test for ovarian cancer. Pap tests do not detect it. Until there is a test, the key to early diagnosis is awareness. And the key to awareness is knowing the subtle symptoms of ovarian cancer and urging women to take early action and live.
It is this goal to improve symptom awareness (and also quality of life and survival rates), along with offering comprehensive educational information, initiating patient/physician dialogue, and raising awareness of incidence, prevalence, and research that continues to drive the NOCC forward in its mission. But it’s comments like this from three-year survivor Jackie Dandridge that really fuel the organization and push its members to continue their important work: “The NOCC has meant the world to me. It has given me the strength and the courage to beat ovarian cancer and gives me hope that we’re working toward a cure.”
For more information about the National Ovarian Cancer Coalition, visit www.ovarian.org or call (888) OVARIAN [888-682-7426].
Survivor Profile Jackie Dandridge
Briefly describe your diagnosis and treatment:
In January 2003 I began having to urinate what seemed like every ten minutes. Since I thought that I had a bladder infection, I made an appointment with my gynecologist. He did a Pap smear and a biopsy of my uterus. The biopsy came back normal, but the Pap smear showed some irregular cells. I was told to return in three months. During that time I experienced constant constipation, swelling in my belly, fatigue, weight loss, and some pain.
As part of my second visit, I underwent a CT scan. That testing resulted in a diagnosis of Stage II ovarian cancer. Upon hearing the diagnosis, I was in disbelief.
I was then referred to a gynecologic oncologist. On July 8, 2003, I underwent a hysterectomy and was also given a colonoscopy bag. Thankfully, the bag was able to be reversed seven months after surgery. My treatment began six weeks following my diagnosis. It consisted of six rounds of chemotherapy (carboplatin and Taxol) every three weeks, during which time I experienced extreme fatigue, some muscle pain, loss of appetite and depression.
What was your age and health status at time of diagnosis?
I was 53 at the time of my diagnosis and in great health.
Did you have a family history of this disease?
No, as a matter of fact I had never even heard of ovarian cancer!
How did your diagnosis affect your work and family life?
I did not work during treatment. I was divorced at the time, and I do not have any children. I relied on my mom, my sister, and several friends for support. They helped me so much that I always referred to them as “Jackie”s Angels”. I could not have gone through everything without their support.
Where did you turn for emotional support following your diagnosis?
Family and friends rallied around and spoiled me beyond belief. I never had to cook, clean house, or worry about getting to treatments or doctor’s appointments. In addition, my work with my local (Pittsburgh) chapter of the National Ovarian Cancer Coalition (NOCC) was a God-send for me.
What did you learn from your cancer experience?
Even though being diagnosed with ovarian cancer was a scary thing at first, I gained a new respect for how much I am loved. In addition, I learned that I could help others with the same diagnosis through my involvement with the NOCC Pittsburgh chapter, by joining the NOCC speakers’ bureau, and by volunteering for our annual Ovarian Cancer Walk. These activities have allowed me to share my experiences and to educate others about ovarian cancer.
What is your current health status and how often do you receive follow-up care?
I am doing fantastic and am now scheduled to see my doctor every six months for follow- up.
Do you have any tips to offer newly diagnosed patients?
The most important thing is to find a gynecologic oncologist once you’re diagnosed with ovarian cancer. Also, it is really important to always take someone with you to doctor’s appointments and to write down any questions you may have for the doctor. It is also helpful to remember that no two people are alike, especially when it comes to how one will react to chemo. Finally, I would advise one to keep a daily journal as they go through their journey, to take daily walks, maintain a healthy diet (which should include drinking plenty of fluids), and, above all, maintain a positive attitude.
A Blueprint for Hope
The Clearity Foundation is helping advance ovarian cancer treatment and helping women diagnosed with ovarian cancer gain valuable insight into the disease.
Aimee Jungman’s ovarian cancer story starts in an eerily familiar way: the otherwise healthy and active 39-year-old experienced vague symptoms (including persistent stomach cramps, occasional sharp pains, and gastrointestinal issues); concerned, she visited several doctors, who diagnosed her with—in this order—a urinary tract infection, a small ovarian cyst, and irritable bowel syndrome. Finally, two months after her symptoms had first prodded her to seek a diagnosis, she was told she had advanced ovarian cancer that had spread throughout her abdominal area.
It is at this point, however, that Aimee’s story takes a novel, and fortunate, turn. Having immediately begun chemotherapy treatment—Taxol® (paclitaxel) and Paraplatin® (carboplatin)—Aimee initially responded well, but she wasn’t confident that the standard protocol and treatment methods were enough. She knew that ovarian cancer responds to a particular chemotherapy regimen only once and that the chance of recurrence was extremely high. She knew she needed a long-term plan.
“The treatment routine I was on has not changed substantially in 40 years. It’s the same for every woman regardless of differences in their genetics or tumor structure,” she says. “This means the drug is not personalized for tumor differences, and if there is no response to the drug, physicians experiment with different agents with the hope that one will be effective. This trial-and-error approach is not only random and ineffective but an incredibly difficult one for the woman going through chemo after chemo.”
Enter Aimee’s friend, cancer advocate Laura Shawver, PhD, a cancer researcher and ovarian cancer survivor. After meeting with Aimee’s doctor, who could not offer any additional ideas should Aimee’s current treatment plan fail, Dr. Shawver recommended to her friend that, in addition to seeking out a noted ovarian specialist, she undergo genetic testing for mutations in the BRCA1/2 genes and have her tumor profiled. A tumor profile, or “blueprint,” Dr. Shawver said, would give Aimee’s doctors more information about her specific disease. “Although one woman’s ovarian cancer might look the same under a microscope as another woman’s, on a cellular level the information pathways in their tumor may be activated or suppressed very differently. This means they are likely to respond to different drugs.”
This same idea was the basis for Dr. Shawver’s founding, in 2007, of the Clearity Foundation. After seeing firsthand the very limited treatments available to those diagnosed with recurrent ovarian cancer during her own battle with the disease, Dr. Shawver wanted to help other women access treatments that were most appropriate for their specific tumor and would thereby offer the best chance for long-term remission. With that goal the foundation was launched with the mission to “help women with recurrent ovarian cancer live longer, healthier lives by applying the knowledge of a genetic signature of her tumor to make more informed decisions about treatment.”
Since its founding the Clearity Foundation has worked with diagnostic labs to help women have tumors profiled and to assist them in interpreting the results. If a patient cannot afford the costs associated with the diagnostic tests or does not have insurance to cover the testing fee, the foundation, a 501(c)(3) nonprofit organization, can provide financial assistance. The foundation also provides support services, including diagnostic test coordination with qualified labs and clinical trial identification based on the patient’s individual tumor biology.
In addition to its work with individual patients, the Clearity Foundation is committed to compiling information about recurrent ovarian cancer in the interest of long-term research. To that end it has created the Diane Barton Database, named in memory of Diane Barton, MD, who died of ovarian cancer in 2005. When a woman undergoes profiling through the foundation, her profile data are interpreted using this specific ovarian cancer database rather than comparing her data with the literature or using all tumors or all types. In addition, if the patient agrees to be a part of Clearity’s ongoing study, this valuable information is stored (her confidential information is protected), and her response to treatment is then tracked throughout her journey. Ultimately, the long-term goal is to gather information about patterns in similar profiles and other insights into treatment responses that will help develop more-effective treatments.
Dr. Shawver says that her hope is that information provided by the database would be used in the novel design of clinical trials. “If we can marshal all of the women battling this disease to participate in smartly designed clinical trials, we can change the course, not only for ourselves but for women diagnosed in the future so they do not have to endure a trial-and-error approach to treatment.” Dr. Shawver is inspired in her work with the foundation by all of the individual women whose stories she has had the privilege to hear—as well as by the stories of those lost to the disease. “I am also driven by the loss of intellect and creativity when someone dies of ovarian cancer,” she says.
It is the opportunity to help more women survive to share their gifts, and to encourage oncologists in their efforts to do the same, that continues to fuel Dr. Shawver’s work: “The impact that we are having with individual patients constantly reinforces my belief that we can change the way recurrent ovarian cancer is treated for everyone.”
For Aimee, the decision to have the tumor profiled proved invaluable. “In my case, my profile and BRCA results suggested that cisplatin [Platinol] and Gemzar® [gemcitabine] would be a more effective drug for me, and I switched from Taxol and Paraplatin after my surgery,” she says. “I also now have a map for the future, which shows what’s going on inside the cancer cell and points to future treatment drugs and clinical trials if I should need them.”
Aimee’s journey has instilled in her the desire to help other women diagnosed with ovarian cancer. She joined the Clearity Foundation Board of Directors this year and is grateful to have the opportunity to support an organization that had such a profound effect on her own life. “Clearity helped me avoid the trial-and-error approach so many women suffer through, and it reinstilled hope and optimism around my journey,” Aimee says. “I’ve been in remission for over a year and am completely reengaged in life again but with a renewed sense of purpose around helping women fight this disease. I’m back working crazy hours, trying to juggle friends and family commitments. Life is pretty chaotic once again, and I wouldn’t have it any other way.”
For more information about the Clearity Foundation, visit www.clearityfoundation.org.
Am I a Candidate for Tumor Profiling?
You might be a good candidate for tumor profiling if:
- You are a newly diagnosed Stage IIIC or Stage IV patient with a high-grade tumor and have had surgery in the past six months
- You are having a recurrence since your first diagnosis, and your doctor has planned another surgery or a biopsy to remove tumor tissue
- You have had a recurrence since your first diagnosis, and another surgery or biopsy was performed to remove tumor tissue during the past two years
- You are having a second or third recurrence, and you have had a surgery or biopsy to remove tumor tissue in the past year
Focused on Prevention
The Lynne Cohen Foundation for Ovarian Cancer Research honors a mother’s generous spirit and shines a light on the critical need for early detection.
Founded in 1998 the Lynne Cohen Foundation for Ovarian Cancer Research (LCFOCR) is dedicated to supporting groundbreaking research to improve the survival rates of women with ovarian cancer, focusing its efforts specifically on the emerging role of screening and prevention in women’s cancers.
Amy Cohen Epstein, president and executive director, says the foundation’s mission reflects the compassionate and philanthropic spirit of her mother, Lynne, who lost her battle with ovarian cancer at 48 and in whose honor the foundation was created. “Giving back and helping others is something that came very naturally to both my parents, especially my mother,” says Amy. “She spent most of her time and energy throughout her life focused on the needs of her friends, her family, and people in her community.”
The foundation’s decision to focus efforts on prevention and early detection stems from the fact that there is currently no early-detection test for ovarian cancer, and the disease is often not discovered until it has reached a late stage, when survival rates are not high. Progress will be made only when an earlier diagnosis is possible, Amy says. “Ovarian cancer symptoms are vague and often misdiagnosed, and our goal is to work with the research community to give women more resources, information, and tools to catch the disease at an early stage—or, better yet, to come up with preventive measures that keep women safe.”
Funded by a combination of grants, individual donations, and the proceeds from several annual fundraising events, the foundation’s efforts have already been making a difference in the lives of women across the country. Since 1998 the LCFOCR has donated more than $6 million to support research and prevention care for women’s cancers, including the creation of five preventive care clinics at hospitals throughout the United States: Lynne Cohen and Caring Together Project for Women with Increased Risk for Cancer Risk at Bellevue and NYU Langone Medical Centers in New York; the Lynne Cohen Preventive Care Clinic for Women’s Cancers at USC/Norris Comprehensive Cancer Center in Los Angeles; the Lynne Cohen High Risk Screening and Prevention Project for Ovarian and Breast Cancer at MD Anderson Cancer Center in Houston; and the Lynne Cohen and Norma Livingston Preventive Care Program for Women’s Cancers at University of Alabama in Birmingham.
In addition, in 2005 the foundation established the Lynne Cohen Consortium to collect uniform data on patients seen at any of the Lynne Cohen Preventive Care Clinics for Women’s Cancers. With centralized data readily available for researchers from any of the participating centers, this partnership facilitates cross-institutional research and paves the way for advances in research and prevention.
In all that LCFOCR does, Amy says, the foundation is guided by Lynne Cohen’s vibrant, generous spirit. “Everything we do, we do in her name and with the knowledge that she is the inspiration and the drive that keeps us going. She was a woman whose presence and spirit made people’s lives better. We hope the Lynne Cohen Foundation will always do the same.”
For more information, visit www.lynnecohenfoundation.org.
Ovarian Cancer Risk Factors Q&A with Lynda D. Roman, MD
Ovarian cancer is sometimes referred to as “the silent killer” because it’s often not discovered until it has progressed to an advanced stage. Why is the disease so difficult to detect in the early stages?
Ovarian cancer tends not to give symptoms until it has metastasized (it is the metastases that are usually the cause of the symptoms). Also, ovarian cancer tends to metastasize rapidly. Occasionally, a large mass that causes symptoms will form on the ovary before spread occurs, and in such instances it is possible to diagnose ovarian cancer early.
What are the risk factors for ovarian cancer?
The risk factors include never having had children, having a positive family history of ovarian cancer and/or early-onset breast cancer, or carriage of a genetic mutation (such as BRCA) that markedly increases the risk of both breast and ovarian cancer.
If a woman is at high-risk of ovarian cancer, what type of screening or preventive care should she pursue?
The current recommendation is to undergo pelvic ultrasound and CA-125 blood testing every six months and to consider removal of the ovaries and the fallopian tubes by the age of 40.
Can a general practitioner provide comprehensive ovarian cancer screening, or should a woman seek out an expert?
A general practitioner can provide screening, but it is best that a specialist, who will be well versed in new developments, be involved in the care to initially outline a plan, then to assess the patient once a year to discuss any new developments or recommendations.
Please describe how the Lynne Cohen Foundation for Ovarian Cancer Research is working to advance research related to prevention and screening.
The Lynne Cohen Foundation provides invaluable support to specialized clinics around the country that are dedicated to the care of women at increased risk of ovarian and breast cancer. A database that includes extensive information about these women has been established, allowing focused research on their specific needs. Specialists working in these clinics gather annually to discuss research protocols and how to better serve the needs of these patients.
Lynda Roman, MD, completed her fellowship in gynecologic oncology at the MD Anderson Cancer Center in Houston, Texas, in 1991. She currently serves as director of the Division of Gynecologic Oncology at the University of Southern California, as well as the director of research and the fellowship program director. Dr. Roman is also the co-director of the Lynne Cohen Preventive Cancer Care Clinic at the USC/Norris Comprehensive Cancer Center. She was recently appointed to the governing council of the Society of Gynecologic Oncologists.
Ten Years of KICKIN’ CANCER!
This annual 5K walk/run raises funds and awareness while celebrating the memories of those lost to women’s cancers.
When Lynne Cohen’s children considered what kind of event they would like to establish to honor their mother and raise funds for the foundation they had created in her name, they thought first of a run or walk event. “My mom was an outdoor person,” says Amy Cohen Epstein, president and executive director of the Lynne Cohen Foundation for Ovarian Cancer Research. “She loved being active and genuinely enjoyed the warm Southern California weather.” Most of all, Amy says, she loved spending time with her family. Combining these two loves resulted in the first KICKIN’ CANCER! 5K walk/run event in the Brentwood neighborhood of Los Angeles in 2002, which drew about 800 participants, many of whom knew Lynne and her family.
Fast-forward 10 years, and KICKIN’ CANCER!, which has raised more than $2 million since its inception, will likely see about 3,000 runners and walkers take to the 5K course in the neighborhood that Lynne loved. In addition to the walk and run, the event includes a Kiddie Fun Run and a Family Expo, celebrating family and raising awareness and funds for ovarian and breast cancer research. “Grandparents, parents, children, and babies all come out to support this event and the Lynne Cohen Foundation in an active and meaningful way,” Amy says. “What started as a small event to honor and remember one woman has grown into a community of dedicated individuals and businesses united in the fight against women’s cancers.”
The event serves as both a celebration of life and a memorial to those lost, Amy says. “Most of all, it is a day of hope, inspiration, action, and fun. This is what my mom was all about, and she would have loved to participate in KICKIN’ CANCER!”
For more information about KICKIN’ CANCER!, visit http://kickincancer.com.
The Queen of Hearts Foundation
By Krish Tewari, MD
Although research into the origins of ovarian cancer and the development of effective screening strategies and curative therapies are ongoing, much work remains to be done. Despite the great need, the uncertainty of our current economic climate has made conducting quality ovarian cancer research—including promising clinical trials—a challenge. In the face of this hardship, it is heartening to consider the invaluable support that private foundations offer to research programs. At the University of California at Irvine Chao Comprehensive Cancer Center, where I practice and conduct research as a gynecologic oncologist, the Queen of Hearts Foundation has emerged to become the focal point of our local relief efforts in the war on ovarian cancer.
Founded in 2000 by three sisters—Kim Beaudette, Lori Hunter, and Cathy Greinke—in honor of their mother, Ann S. Dobbie, who passed away as a result of ovarian cancer on Christmas Day in 1999, the Queen of Hearts Foundation is dedicated to raising funds for research to study the tumor biology and the early detection of ovarian cancer. Over the past 10 years, Ann’s daughters, along with the foundation’s development director, Sandy Hanscom, have honored Ann’s memory with a diverse array of fundraising activities, including tennis tournaments, love boat galas, and, in March 2011, the Great Race to Cure Ovarian Cancer Auction at the Crevier Classic Car Showroom in Costa Mesa, California, which raised more than $65,000.
Funds raised by the foundation and donated to UC Irvine have led to critical ovarian cancer research advances, including the study of chemotherapy resistance in ovarian cancer by Robert A. Burger, MD, who went on to conduct what is regarded as one of the most important clinical trials in ovarian cancer in recent years. Additional programs made possible by the collaboration between the foundation and UC Irvine include: the creation of the Ovarian Cancer Center of Excellence in Partnership with the Queen of Hearts, spearheaded by the current Gynecologic Oncology Division director, Robert E. Bristow, MD, and the immediate past division director, Philip J. DiSaia, MD; the generous donation by the foundation of a Queen of Hearts Laboratory; the creation of a $10,000 research award for gynecologic oncology fellows-in-training; and the forthcoming high-risk ovarian cancer screening program called Ann’s Clinic. In each case, the partnership reflects the “discover, teach, and heal” tenets of UC Irvine.
The support of our research, educational, and clinical programs is invaluable to me in both my professional role as a treating oncologist and personally, highlighting the value of community connection and reminding me regularly of the bigger picture: that more than 75 percent of women diagnosed with ovarian cancer have a very difficult road ahead of them and that our work is critical in changing those statistics.
For more information about the Queen of Hearts Foundation, visit www.qohfoundation.org.
1. Ovarian Cancer Statistics. Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/cancer/ovarian/statistics/index.htm.Accessed June 17, 2011.