The New York Times recently reported that only 37% of women receive proper treatment for ovarian cancer, mostly because gynecologists do not follow guidelines set out by ACOG (American Congress of Obstetricians and Gynecologists) and the NCCN (National Comprehensive Cancer Network). This information was taken from a study led by Dr. Robert E. Bristow, director of gynecologic oncology at the University of California, Irvine. Sadly, the study revealed that most women with ovarian cancer or a suspicion of ovarian cancer are simply not being directed to surgeons who specialize in treating cancer and specifically, gynecologic cancers.
According to Dr. Bristow, just making sure women get to the people who are trained to take care of them would improve the odds in the fight against ovarian cancer than any new chemotherapy drug or biological agent. Even ACOG agrees that women with pelvic masses indicating a high suspicion for ovarian cancer should be managed by physicians with the training and experience that offers the best chance for a successful outcome. Generally speaking, OBGYN’s lack this type of experience because ovarian cancer is so rare. Shockingly, more than 80% of the women in the study were treated by what the researchers call ‘low volume providers’ – surgeons with 10 or fewer cases a year and hospitals with 20 or fewer.
This story really hit a nerve with me for many reasons, but mainly because the guidelines are being ignored. Most women do not know that they need to be referred to a gynecologist specializing in oncology and it appears most docs are none to keen to tell them. These aren’t the only guidelines gynecologists ignore, by the way. When one considers that only 30% of OB/Gyn clinical practice guidelines have actual evidence behind them, it makes me wonder what the heck is going on with women’s healthcare today.
When I read that only 37% of women with ovarian cancer were receiving the proper care, I immediately thought of how I was subjected to improper clinical care. You can read my full history here.
Briefly, my healthy ovaries were removed during a routine hysterectomy, placing me at a much greater risk for heart disease. The removal of my ovaries and in fact the hysterectomy itself, was against clinical guidelines.
Women with ovarian cancer rarely receive proper treatment while women with no cancer often receive radical over-treatment.
Houston, we have a problem! When it comes to women’s ovaries, gynecologists too often just can’t get it right. Or maybe they just don’t want to… Of the 600,000 hysterectomies performed each year, 73% are estimated to involve ovary removal. Since 90% of all hysterectomies are considered to be medically unnecessary in the first place, this is a huge problem. Even more disturbing is the fact that less than 1% of women whose healthy ovaries are removed have a family history of ovarian cancer. One has to ask why gynecologists are routinely removing healthy ovaries from so many women – especially given the many serious health risks.
There are guidelines in place regarding the indication for hysterectomy and ovary removal. Yet, those guidelines are not followed. A whopping 76% of hysterectomies do not meet ACOG’s own criteria. The most common reasons hysterectomies don’t meet criteria and are considered to be inappropriate are lack of adequate diagnostic evaluation and failure to try alternative treatments before hysterectomy.
Gynecologists routinely rush women into surgery without trying other options first, including doing nothing other than ‘watch and wait’ in some cases. Clearly, women aren’t receiving proper care all the way around regarding ovarian cancer nor are they being properly informed about the alternatives to hysterectomy. Whether we’re talking about birth control, HRT, ovarian cancer or hysterectomy, it pays for women to become educated about their health and their healthcare options. It may save their life.
Thank you for reading my post Dr. Barb. I appreciate your thoughtful comment. I’m especially interested in knowing more about what you’re doing to help woman who’ve undergone surgical menopause. Specifically, I’m very curious to know if you recommend hormone replacement therapy and if yes, I’d like to know what you’ve had the most success with.
I hear from women all the time who have severe and debilitating symptoms. Personally, I have struggled every day since surgery in 2007. Any advice you can give would be most welcome.
I’m a gynecologist and have been practicing for 24 yrs. I no longer do surgery, In the past 6 years I have a menopause-related practice (not exclusively, but mostly). The reason I have a ‘focused’ practice is partly to now treat the symptoms of surgically menopausal women as well a spontaneous menopause. Surgical menopause is a very difficult situation for many women to manage, and unfortunately, could often be avoided. And many practitioners aren’t educated in options to offer women (that’s another topic).
Over the years it was common practice to do surgery and ‘while I’m in there I’ll just take out your ovaries’, thinking we were preventing the possible need to go back to surgery for a future ovarian cyst, ovarian cancer, etc. More recently (in the past decade), we now realize that ovaries continue to provide important benefits for women, and probably little risk. Certainly more women are advocating to retain their ovaries, unfortunately many physicians are not adequately informing patients of the risk/benefits so many women leave it up to the physician to decide for them or assume they might as well have them removed.
As for following practice guidelines, that is a far more complicated issue. Frankly, too many women are having a hysterectomy, but remember, that is also driven by the consumer. Many women ‘demand’ it. Ultimately, it isn’t up to the patient, but you can bet their opinion matters. When women have been dealing with unwanted/abnormal/heavy bleeding (the most common indication for a hysterectomy) ‘they just want it taken care of, get it out’. There are far less invasive options for treatment, but they are not guaranteed to work, so many women are intolerant of the thought that it may take months to trial an option and then it may not be effective. The ‘Lean In’ professional, busy woman doesn’t have the luxury of time, in her opinion.
Also it is very possible that the guidelines for practice in fact have been met, but they were not documented. We are terrible are relating all of the details of a history and assessment, and then documenting them in a concise way, so when charts are reviewed to see if guidelines are met, they often lack the documentation to support this.
The American College of Obstetrics and Gynecology has 133 Practice Guidelines and a 573 page document called Guidelines for Women’s Health Care and they do not outline specific recommendations for removing/retaining ovaries. They don’t even give specific indications for hysterectomy. This is all in reference to treating benign disease.
Ovarian cancer should be managed by gynecologist oncologists, but many communities don’t have those specialists available to them. Some practitioners and patients elect to treat locally if it isn’t feasible to seek out the specialist care.
Bottom line, women need to advocate for themselves, and it’s complicated!
Thank you for reading my post WS and for taking the time to comment. I agree with you when you say that hysterectomy is out-and-out harm. Hysterectomy is absolutely not ‘normal’ for the human body. I’m sorry you too have experienced this harm.
The uterus is the center of life and energy for every woman. And, the ovaries produce vital hormones needed all of a woman’s life. So many things begin to go wrong physically, mentally, and sexually once a woman’s major nerves and ligaments are severed and the uterus and ovaries are removed.
It’s going to take woman educating themselves on the function of the female organs and then speaking out against unnecessary hysterectomy and castration to change things.
Sadly, women’s healthcare remains slipshod even today in my opinion. Hormones Matter has started the conversation which I hope will help make a real difference.
I would be willing to write a blog post about my experience using an alias.
Excellent article, Robin! I too was a victim of overtreatment through the unnecessary removal of my sex organs. My gynecologist should have just removed a benign ovarian cyst. Instead he, with the help of gynecology residents, removed all my sex organs – both ovaries, uterus, and fallopian tubes. According to medical studies, I’m now not only at increased risk for heart disease but also stroke, hip fracture, lung cancer, Parkinsonism, dementia, cognitive and short-term memory impairment, depression, anxiety, sleep disturbances, decline in sexual function, decreased positive psychological well-being, adverse skin and body composition changes, and adverse ocular changes, as well as more severe hot flushes and urogenital atrophy. Many of these “risks” occurred overnight. And this is HEALTH CARE?!? This is out-and-out harm!
The overuse of hysterectomy and oophorectomy has been an ongoing problem for MANY decades. The study concluding that 76% of hysterectomies don’t even meet ACOG criteria was published in 2000. So why has nothing been done to reduce these surgeries? Doctors, hospitals, and insurance companies are all to blame for the gross overuse of hysterectomy and oophorectomy. Money and power can be the only explanations.
Hi,
Would you like to write a blog post about your experiences? It will take a village to change the system. The more women that speak up and speak out, increases our chances of improving healthcare.