"75% percent of those at high risk for BRCA mutations have no idea they may have increased chance of ovarian cancer, Hutch study shows". This is an alarming report from the Fred Hutchinson Cancer Research Center. I have labelled this "Ovary Apathy".
The lack of awareness of ovarian cancer symptoms is a major barrier to fundraising and for gaining traction towards achieving screening protocols and hopefully a cure. Breast health education programs need to include gynecological health, especially ovarian health, in order to bridge this huge gap that can lead to late stage diagnosis of ovarian cancer. I fully believe that ovarian cancer awareness organizations need to partner with other well established female health campaigns to achieve their goals.
Unfortunately it also appears that practitioners are not using available tools to identify the symptoms of ovarian cancer. (see B. Schlappel et.al. below) In other words, what does your doctor do to raise your awareness of ovarian cancer symptoms?
If our practitioner is not using already available tools to monitor for symptoms of ovarian cancer how are women to become more aware of it themselves? According to the research below, "Only 20% of respondents (practitioners) reported that they were aware of an ovarian cancer symptom index"!
Herein lies the battle, the advocacy burden, the "responsibility" issue.
Those of us with ovarian cancer see this, and we are here speaking out loud to women, and men, everywhere. The MYTH that ovarian cancer only happens to older women also diffuses any sense of urgency to educate all women, in my opinion, about this illness. We love our ovaries, we need our ovaries. We need our ovaries just as much, if not more than our beautiful boobies. Life on earth depends on our ovaries. http://www.innerbody.com/image_endoov/repo07-new2.html
Our doctor needs to know about the symptoms index and our doctor needs to be interested in our overall gynecological health, including risks for ovarian cancer. Our doctor is the one with the medical degree. Our doctor is the one who should know that PERSISTENT bloating is a symptom of ovarian cancer. Our doctor should know that constipation can be a symptom of ovarian cancer. Our doctor should know that getting full quickly can be a symptom of ovarian cancer. Our doctor should know that abdominal pain could be a symptom of ovarian cancer.
Our private time with our physician is the time to have that preciously coveted 1:1 conversation where the most personal and potentially embarrassing issues raise an educated eyebrow. We need to work together with our doctors to achieve optimum health, but it is disappointing to me that most physicians are not using the tools available to them to help us out.
A curious, caring and interested well educated physician is the one who orders the transvaginal ultrasound or CT Scan and CA 125 blood test. The physician does the critically important bimanual exam that physically checks the size and shape of your ovaries. We need our doctors to use the tools and be more aware as well. We cannot do this on our own.
The unintended consequence of what seems to be over-arching ovary apathy is that by the time ovarian cancer is brought into the conversation, it is after ovarian cancer has spread. A female is now facing surgery, chemo and possibly loss of life. She is in the prime of her life, she is possibly just a child, she is a grandmother, she is single and still looking forward to having a family. She is you. She is me. She is an actress. She is a mom. She is a daughter. She is an aunt. She is a sister.
She is worth the time and effort it takes to arm her with information about ovarian cancer so that IF she feels them, she has the power to do something.
Peace and Blessings!
Assessment of primary care providers' current clinical practices in determining a woman's risk for ovarian cancer
B. Schlappe1, A. Schwartz2, C. Wong1, R. Luebbers1 and E. Everett1
1University of Vermont, Burlington, VT, 2University of Wisconsin, Madison, WI
Objectives: Ovarian cancer is the gynecologic cancer with the highest mortality rate, yet it is also a disease with known hereditary risk factors and, more recently, a better-defined set of symptoms in early-stage disease. The purpose of this study was to assess primary care practitioner knowledge of ovarian cancer risk factors, current usage of standardized tools, and the willingness to adopt a clinical decision rules algorithm into their daily practice regarding the identification of women who are at increased risk for ovarian cancer.
Methods: A survey was sent via email to 481 primary care practitioners using an online survey tool. Topics addressed included: history-taking practices, hereditary and symptomatic risk factors for ovarian cancer, and willingness to adopt a clinical decision rules algorithm into their daily practice regarding the identification of women who are at increased risk for ovarian cancer.
Results: Preliminary data from 79 respondents was presented at the 2013 New England Association of Gynecologic Oncologists Annual Meeting. Final data are now available from 179 practitioners (37% response rate). The demographics of those who responded are: 37% family medicine, 11% obstetrics and gynecology, 18% internal medicine, and 9% nurse practitioner/physician assistant. Only 20% of respondents reported that they were aware of an ovarian cancer symptom index. With regards to hereditary nonpolyposis colorectal cancer (HNPCC) screening, 5% of respondents knew either the Amsterdam II Criteria or the Revised Bethesda Criteria, but only 1.5% reported using either criteria in clinical practice. With regards to family history, most respondents reported rarely asking questions that specifically evaluate for an increased risk of BRCA mutation. Sixty-seven percent answered that they would be willing to use a standardized patient questionnaire, and 72% were willing to use an electronic medical record tool.
Conclusions: Primary care practitioners in our population are underutilizing available standardized tools for detecting women at risk for ovarian cancer. There also appears to be strong support from practitioners for the creation of a standardized patient history questionnaire or electronic medical record tool to aid in increasing the capture rate of these women.