|
The National Ovarian Cancer Coalition's mission is to raise awareness and promote
education about ovarian cancer. The Coalition is committed to improving the survival rate and
quality of life for women with ovarian cancer.
SURVEY RESULTS
A survey regarding ovarian cancer revealed some startling and disturbing statistics. On behalf of
the NOCC, Impulse Research Corporation conducted an online survey in March and April of 2006 with a
random sample of 1,003 women age 40 and over, representing a cross-section of US women in that age group.
The overall sampling error for this survey is +/- 3% at the 95% level of confidence. A sampling of some
of what was found is noted below:
Awareness of Symptoms and Risk Factors
- Only 15% of women are familiar with the symptoms of ovarian cancer.
- 82% have never talked to their doctor about the symptoms and risk factors of ovarian cancer.
- 54% of women who have never spoken to their doctor about ovarian cancer do not think it’s an issue because their doctors never initiated the discussion.
- About 40% are not sure about the risk factors of ovarian cancer.
Ovarian Cancer Misconceptions
- 67% of women incorrectly believe that a yearly Pap test is effective in diagnosing ovarian cancer.
- Many women incorrectly identified the use of high-dose estrogen without progesterone (35 percent) and extended use of the birth control pill (27 percent) as risk factors.
Women who have used oral contraceptives for three or more years have a about a 30-50 percent lower risk of developing ovarian cancer.
Ovarian Cancer Awareness vs. Breast Cancer Awareness
- Compared to the 15% of women who are familiar with the symptoms of ovarian cancer, 53% of those same women are familiar with the symptoms of breast cancer.
- 59% of women have talked to their doctor about breast cancer, compared to only 18% of women who have talked to their doctor ovarian cancer.
It is facts like these that drive our organization. There is clearly a need for education and awareness
about ovarian cancer.
EDUCATIONAL PRESENTATION
Ovarian Cancer is a complicated disease, and the experience of each patient is different. The
information provided here is meant to provide a very basic summary about the disease, as part of
promoting education about the disease. It is not intended to be all inclusive or diagnostic. The information
contained in this site does not and should never take the place of advice from your physician.
The information provided here is a portion of what is provided in the educational presentation developed by the
NOCC in 2006. For more information on the educational presentation
and how to have it presented to your group, see our Educational Page.
COMMON MYTHS ABOUT OVARIAN CANCER:
- Myth: My pap smear is normal, therefore I don’t have ovarian cancer
- Truth: Pap smears ONLY detect cervical cancer. A normal pap smear does not indicate anything regarding the possibility of ovarian cancer.
Myth: Birth control pills cause ovarian cancer
Truth: In fact, the opposite is true. Birth control pills may lower the risk. Some medical professionals believe this is because a woman’s ovaries do not ovulate while on birth control pills and so a woman on birth control pills may be less likely to develop ovarian cancer.
Myth: If there is no family history, I can’t get ovarian cancer
Truth: Only about 10% of the cases diagnosed each year are patients with a family history. It is important to know your family history with regard to ovarian, breast, and colon cancers, but you should also be aware that the disease can develop in someone with no family history of the disease.
An opinion poll of 1,000 adults conducted by Harris Interactive in August 2003 via Internet found a disturbing knowledge gap about the prevention and detection of ovarian cancer:
- 85% of those surveyed believed that an annual Pap smear can detect ovarian cancer
- 48% surveyed incorrectly linked the use of birth control pills to increased risk
- 75% did not know ovarian cancer is more prevalent in white women
(source: www.cancer.com)
This lack of accurate information about ovarian cancer is one of the leading reasons for organizations such as the NOCC. For women to be able to take a proactive approach to their own health care, they need to know the facts about ovarian cancer.
WHAT IS AN OVARY? WHAT DOES IT DO?:
The ovaries are two walnut-sized (pre-menopausally), pearl-colored organs that lie just below the fallopian tubes on each side of the uterus.
In a pre-menopausal woman the ovaries produce ripe eggs about once a month from the age of 14-15 onward. Each egg is walled off from the rest of the ovary in a cyst (this is a normal cyst formation). At ovulation, which is typically in the middle of a woman’s monthly menstrual cycle, the cyst bursts and the egg is released from the ovary and picked up by the fallopian tube. After this ovulation, the remaining cyst tissue becomes a second cystic area called the corpus luteum and it begins to secrete the hormone progesterone. (The ovaries produce a number of hormones including estrogen, progesterone, and androgens throughout the life cycle).
This is a typical ovary. The large circular area at the top, and smaller one near the bottom, are cysts at various stages in the cycle.
After a woman reaches her thirties, the ovaries typically begin to decrease in size. The ovaries lose mass after age 45. The ovaries continue to produce hormones long after menopause.
A normal ovary is about 1.5 inches in length (less than 5 cm). The cancerous specimen shown above is 4-5x normal size.
OVARIAN CANCER FACTS AND FIGURES FOR 2003:
From the American Cancer Society
The overall 5-year survival rate for ovarian cancer is 50%.
However, the 5-year survival rate is more than 90% when the disease is confined to the ovary (Stage I).
Unfortunately, only 25% of all cases are diagnosed at Stage I. 70% of the cases are diagnosed when the cancer has spread.
Ovarian cancer is the leading cause of death amongst gynecologic cancers
Approximately 1 woman in 55 (1.8%) develops some form of ovarian cancer in her lifetime.
By increasing awareness about ovarian cancer, the NOCC and its affiliated organizations aim to increase the number of ovarian cancer patients who are diagnosed in the earlier stages of the disease, and thus improve the overall survival rate.
SYMPTOMS:
95% of women DO report symptoms!
One of the most difficult aspects of ovarian cancer has to do with the symptoms. Many of the symptoms are vague or occur in conjunction with many other, more common, medical problems. For this reason, women are sometimes reluctant to express their symptoms to their physician, or the symptoms may be overlooked.
Any woman with symptoms should be aware that it is more likely she has some other problem than ovarian cancer and therefore she shouldn’t be unduly frightened. However, she should also make sure her symptoms are reported to her physician and that the physician follows up on the symptoms to find the cause. Although ovarian cancer is relatively rare compared to other cancers, it is important not to overlook the symptoms.
The symptoms noted below are in decreasing order of frequency – i.e. the first is the symptom most commonly reported by women with ovarian cancer and the last is the rarest symptom reported.
- Pelvic or abdominal pain or discomfort
- Vague, but persistent gastrointestinal upsets such as gas, nausea, and indigestion
- Frequency and/or urgency of urination in absence of infection
- Unexplained change in bowel habits
- Unexplained weight gain or loss, particularly weight gain in the abdominal region
- Pelvic and/or abdominal swelling, bloating and/or feeling of fullness
- Pain during intercourse
- Ongoing fatigue
- Abnormal postmenopausal bleeding (this symptom is rare)
Note: The combination of severe bloating, abdominal swelling, and urinary problems occur together much more frequently in women ultimately diagnosed with ovarian malignancies.
OVARIAN CANCER RISK FACTORS AND RISK REDUCTION:
Factors That Increase Risk
Age:
- Incidence of ovarian cancer in women under age 40 is 1.4 in every 100,000 women
- Incidence of ovarian cancer in women over age 60 is 38 in every 100,000 women
Epithelial ovarian cancer is primarily a disease of postmenopausal women. However, ovarian cancer can occur at any age.
Heredity:
- If there is no family history of ovarian cancer, the average woman’s lifetime risk of getting ovarian cancer is 1.8%.
If a woman has one first-degree relative who has had ovarian cancer, the lifetime risk is 5%
If a woman has 2 first-degree relatives who have had ovarian cancer, the lifetime risk is 7%
If there is a known BRCA1 or BRCA2 gene mutation (requires genetic testing), the lifetime risk is 40-50%. If a member of your family has had ovarian cancer, you may want to ask whether they had gene testing done and the results. However, it should be noted that some people with the BRCA1 or BRCA2 gene mutation never develop cancer, and many patients with cancer do not have the gene mutation. There is more on the BRCA gene mutations below.
So who has a heredity risk?
If there is a history of 2 or more individuals from the same side of the family (including yourself) with premenopausal breast or ovarian cancer at any age (there is a genetic link in some types of breast and ovarian cancers so knowing your family history of both is important)
A male relative with breast cancer is another indicator for the possibility of a genetic abnormality
If a relative (male or female) is known to carry the BRCA1 or BRCA2 mutations.
Remember, hereditary syndromes account for only 10% of epithelial ovarian cancers. Most are spontaneous.
Infertility/No Children:
- Women who have had no children, no pregnancies, with no history of birth control pill usage, appear to be at higher risk of developing ovarian cancer. One theory to explain this is that these women have had uninterrupted ovulation (during a pregnancy a woman does not ovulate, nor does she ovulate when on birth control pills). The uninterrupted ovulation means increased “trauma” to the ovary in the form of monthly egg and cyst development and this theory is that this increases the risk of ovarian cancer. However, it is again important to remember that women who have had children or have used birth control pills may still develop ovarian cancer.
Personal History of Cancer:
- Women who have a personal history of breast, colon, uterine (endometrial) cancers are at increased risk of developing ovarian cancer
Women with a personal history of breast cancer have 4 times the risk of developing ovarian cancer
Heritage:
- 1 in 40 Ashkenazi Jews carry the BRCA1 or BRCA2 gene mutation that increases a woman’s risk for ovarian cancer. This does not mean 1 in 40 Ashkenazi Jewish women will develop ovarian cancer as not everyone who has the gene mutation develops the cancer. However, the incidence is higher than in the general population.
Some recent studies looking at the prevalence of ovarian cancer by geographic latitude show higher rates as you move north or south from the equator. There is possibly thought to be some connection between Vitamin D intake and sunlight exposure.
There is a higher incidence rate of ovarian cancer in industrialized countries of northern, western Europe and the United States. In these areas there are 12-17 cases reported annually in every 100,000 individuals.
The only industrialized country showing a low incidence rate is Japan which has a rate of 3-6 cases in every 100,000 annually. Interestingly, this risk increases when an individual moves to the United States. Therefore there is some question whether an increased dietary fat or other unknown mechanism is involved. This is not clearly understood at this time.
Risk Reduction and Prevention
Oral contraceptives:
- These may reduce the risk of ovarian cancer and the benefit is immediate. The average risk is 0.7 for those who have used oral contraceptives for 2 years and it is halved for those who have used oral contraceptives for more than 5 years.
Pregnancies & Breast Feeding:
- The risk is lower in women who have their first full-term pregnancy before the age of 25, have a number of pregnancies, and who breast feed. Note that all of these suppress ovulation for a certain period of time in the woman’s life. Women who begin menstruating at a younger age, or who go through menopause at a later age than average are at increased risk of ovarian cancer. These factors have led to the theory that the “trauma” of ovulation increases the risk of ovarian cancer.
Surgical Options:
- A bilateral tubal ligation (“tube tying”) reduces the risk by 33%. A hysterectomy reduces the risk by 67%, and removal of the ovaries reduces the risk by 95%. However, there are risks with any surgery, and none of these options should be considered without careful consideration of an individual’s overall risk factors and after consultation with a physician. In an average woman undergoing one of these procedures solely to reduce the risk of ovarian cancer would not be recommended by most physicians.
- Note that even removal of the ovaries surgically does not completely remove the possibility of ovarian cancer. There is a type of ovarian cancer (peritoneal cancer) that may still develop from embryologic ovarian cells that exist in the peritoneal cavity of the abdomen.
Diet and Exercise:
- Women who are overweight (an increased body-mass index) are at an increased risk of developing most types of cancers but in particular breast, uterine, cervical, and ovarian cancer. Diet and weight control are an important part of cancer prevention for any individual. Diets which are low in fats and high in vitamin-rich foods are a significant part of reducing cancer risk. Women who work out more than 6 hours per week have a 27% lower risk than women who work out less than 1 hour per week.
BRCA GENES:
BRCA1 and BRCA2 are normal genes in the body which suppress tumors. Everyone has these genes. However, if one of these genes is abnormal (a gene mutation), the development of breast or ovarian cancer is more likely.
1 in every 500 individuals in the general population carry the BRCA1 or BRCA2 gene mutations.
Not all persons with mutations in these genes will develop these cancers.
The BRCA gene mutations can be passed along by the father or mother, thus both parents’ family history is important.
The BRCA genes both autosomal dominant genes which means if one parent has the gene mutation, each child has a 50% chance of inheriting that gene mutation.
- BRCA 1 gene mutation:
- responsible for approximately 70% of hereditary ovarian cancers
breast cancer: lifetime risk 85% versus 11% for the general population
ovarian cancer: lifetime risk 40-60% versus 1.8% for the general population
Colon cancer: Risk 6% by age 70
- BRCA 2 gene mutation:
- Responsible for approximately 20% of hereditary ovarian cancers
Breast cancer: 85% lifetime risk
Ovarian cancer: 15-20% lifetime risk
Men have a 5-10% risk of breast cancer
NOTE: Both MEN and WOMEN pass along mutations in these genes.
It is important to note that not everyone with this gene mutation develops cancer. A genetic counselor can advise you on exactly what the BRCA gene mutation means.
STAGING OF OVARIAN CANCER:
- Stage I – when one or both ovaries is cancerous
- Stage II – when one or both ovaries is cancerous and it has spread to the uterus, fallopian tubes, or other body parts in the pelvic area
- Stage III – when one or both of the ovaries is cancerous and it has spread to the lymph nodes or to other body parts inside the abdomen
- Stage IV – when one or both ovaries is cancerous and it has spread outside the abdomen and/or to the liver
Stages III and IV are considered “advanced” cancer.
Staging of cancer is important in the development of a treatment regimen for each patient and thereby to optimize outcomes. Staging of a cancer is done surgically, and should ideally be done by a gynecological oncologist (a specially trained gynecologist who has received additional training and experience with cancers).
Patients with early stage ovarian cancer usually have a low recurrence rate if they have had full surgical staging and appropriate treatment. Patients with advanced stages of ovarian cancer have a very high recurrence rate even with appropriate staging and treatment.
The importance of diagnosing cancer in the early stages is demonstrated by looking at the survival rates based upon the stage. This table compares the rates for diagnosis in early (“local”) stages and later (“distant”) stages for ovarian and breast cancer. As this shows, most ovarian cancer (70%) is detected at Stage III or IV and have a survival rate that ranges from 0 to 30%. The overall survival rate for all stages is 50%. (Five year survival rates denote the percentage of people alive 5 years after diagnosis.)
The survival rates for each stage of ovarian and breast cancer are fairly similar. However, the overall survival rate for ovarian cancer is substantially less than for breast cancer. This is due to the fact that a larger number of ovarian cancer cases are diagnosed in the late stages compared to breast cancer. With no effective screening test (such as mammography or pap smear) and few specific early symptoms, most women with ovarian cancer are diagnosed in the later stages of the disease.
This is a crucial reason for the existence of the NOCC. By making women more aware of the disease and its symptoms, and raising awareness in the general public for the need to develop an early screening test, the NOCC strives to improve the survival rate for women with ovarian cancer through earlier diagnosis.
SURGICAL STAGING:
Surgical staging is the process by which the surgeon determines the stage of a cancer. This is very important as it is the stage of the cancer that determines what type of treatment the oncologist will recommend. It is extremely important for the surgeon to be meticulous, especially in the early staging of ovarian cancer. The surgeon doing the staging needs to have good understanding of the patterns of spread of ovarian cancer. Studies have shown women receive a more accurate staging when the staging is done by a Gynecological Oncologist as opposed to a regular Gynecologist or OB/Gyn or general surgeon. The Gynecological Oncologist has had a minimum of three extra years of training related to gynecologic cancers beyond their standard OB/Gyn training. In addition, the gynecologic oncologists administer chemotherapy to their patients. A study in the Journal of Obstetrics and Gynecology in 1985 showed the percentage of patients receiving complete staging from a Gynecological Oncologist was 97% relative to only 52% for OB/Gyns or 35% for general surgeons. And an article in the British Journal of Obstetrics and Gynecology in 1999 showed that women whose care was managed by a gynecologic oncologist were more likely to have optimal cytoreduction (removal of disease) and a reduction in death by 25% compared to Ob/Gyn and general surgeons.
SCREENING RECOMMENDATIONS:
These recommendations come from the Gynecologic Cancer Foundation and the National Institutes of Health relating to ovarian cancer.
- All Women should provide their physicians with a comprehensive family history.
All Women should have annual rectovaginal pelvic exams.
Women who have 2 or more family members with breast or ovarian cancer should undergo:
Annual rectovaginal pelvic exams
Annual CA 125 tests
Annual transvaginal ultrasounds
Although these are recommended, there is no data that demonstrates these will decrease the morbidity or mortality from ovarian cancer.
In addition, women with 2 or more family members with breast or ovarian cancer may want to consider participating in clinical trials that are evaluating screening strategies.
WHAT IS CA 125:
CA 125 is a “tumor marker” which means it is a protein made by certain cells of the body.
CA 125 can be determined from a blood draw.
The function of CA 125 is not understood
CA 125 is elevated in the blood in over 80% of advanced epithelial ovarian cancers – but not in all cases so this is not diagnostic
The CA 125 levels can be used to monitor progression of disease in known ovarian cancer patients
The CA 125 level is elevated in only 25-50% of Stage I cancers
The CA 125 level may be elevated in other conditions such as endometriosis, pregnancy, etc.
CA 125 is NOT a screening test for the general population
DIAGNOSING OVARIAN CANCER:
Diagnosing ovarian cancer can be challenging because the signs and symptoms can be quite vague. Effective measures for making the diagnosis of ovarian cancer include:
- Performing a rectovaginal pelvic exam to establish if there is an ovarian mass or nodularity in the pelvis
- Ultrasounds and CT scans are the best studies to identify a mass or ascites; however they are currently unable to definitively distinguish benign from malignant neoplasms. In one study where 5000 women were screen with transabdominal ultrasound, 65 laparotomies were done for every case of ovarian cancer. This means ultrasounds have a high false positive rate.
- CA 125, when elevated, would indicate a higher likelihood that an ovarian tumor is malignant, especially in post-menopausal women. However, approximately half of early stage ovarian cancer patients do not have an elevated CA 125 and a variety of nonmalignant and non-ovarian conditions can elevate the serum CA 125.
- Laparoscopy can be a useful diagnostic tool, especially when the diagnosis is uncertain. Masses too large to be removed intact via laparoscopy require surgical exploration. It is not appropriate to open a mass in the abdominal cavity because of the danger of seeding the abdomen with cancer cells (from the Gynecological Cancer Foundation).
NOW THAT YOU KNOW ABOUT OVARIAN CANCER, WHAT CAN YOU DO?:
- Know your family history of ovarian, breast, colon, and uterine cancers
- Make ALL your physicians aware of your family history
- Inform your gynecologist of any changes in your reproductive cycle or if you have symptoms noted earlier that persist for two weeks or more
- Discuss pros and cons of oral contraceptives and hormone replacement therapy with your health provider
- Seek to improve your overall health and well being through diet, exercise, weight control, and reduction of stress
- ASK QUESTIONS of your doctor whenever you have concerns
- Make others aware of ovarian cancer
It pays to speak up:
- Most ovarian cancer patients receive a diagnosis in the late stages
- But…..
- More than 95% report symptoms well before then. There is an average delay in diagnosis of 3 months!
WHAT TESTS TO ASK FOR:
If you suspect any symptoms mentioned or have a personal history of breast, uterine, or color cancer, or a family history of ovarian cancer, you should consider the following:
- Mandatory annual rectovaginal exam
- Transvaginal sonography (ultrasound)
- CA 125 blood test
WHAT TO DO IF YOU ARE DIAGNOSED WITH OVARIAN CANCER:
- Establish a relationship with a gynecologist oncologist
- Educate yourself about the stage and type of cancer you have
- Educate yourself about treatment options
- Discuss participation in clinical trials
- Discuss with your physician the issues of genetic testing
- Utilize support systems around you
- And always, ASK QUESTIONS
You can download a Conversation Starter sheet here to assist in talking with your
doctor about ovarian cancer. It is available in Word Format or Adobe pdf Format.
CELEBRITIES WHO HAVE DIED FROM OVARIAN CANCER:
- Anais Nin (author) Died 1/14/77. Born 2/21/03
- Joan Hackett (actress) Died 10/8/83. Born 3/1/33
- Sandy Dennis (actress) Died 3/2/92. Born 4/27/37
- Laura Nyro (singer) Died 4/8/97. Born 10/18/47
- Loretta Young (actress) Died 8/12/90. Born 1/6/13
- Jessica Tandy (actress) Died 9/11/94. Born 6/7/09
- Madeline Kahn (actress) Died 12/3/99. Born 9/29/42
- Shari Lewis (puppeteer – Lamb Chops) Died 8/2/98. Born 1/17/33
- Gilda Radner (comic) Died 5/20/89. Born 6/28/46.
- Liz Tilberis (editor, Harper’s Bazaar) Died 4/20/99. Born 10/27/47
Celebrity Impact
During the years 1982-1989, 11-23 families registered per year in the Familial Ovarian Cancer Registry. After Gilda Radner’s death in 1989 of ovarian cancer the registry enrolled 450 families in the next 2 years. The registry was renamed The Gilda Radner Familial Ovarian Cancer Registry.
The information on this site is informational and educational only. It does not and should never take the place of advice from a physician. Users of this site agree that the NOCC, its chapters, officers, staff, members, medical advisory board, and the website designers are not engaged in rendering medical advice or recommendations and no information provided in this site or through this site and its links or emails should be considered as a substitute for consultation with a physician or as a form of medical advice. None of the materials presented should be considered for any purpose other than informational. Further, the NOCC, its chapters, officers, staff, members, medical advisory board, and the website designers have no liability with respect to any actions taken as a result of or in connection with viewing any information contained on the website. All information contained in this site is the property of the DFW Chapter of the NOCC and reproduction or modification for any purpose is
prohibited without express written consent.
|
