I want to tell you about Nancy, one of my closest friends. She's 51, a wife and the mother of a terrific high-school-aged son and college-aged daughter. She's also a medical statistic, the kind of statistic that will break your heart -- as it has hers and her family's and mine. Nancy has ovarian cancer, which is relatively rare -- only about 22,000 women get it each year. But it's staggeringly lethal, killing 2 out of 3 women who are diagnosed.
This fall, Nancy is facing down the fourth anniversary of her late-stage diagnosis; she is now Stage 4. Only 18 percent of women with Stage 4 survive more than five years. As the editor-in-chief of Prevention, who every day aims to educate and inspire American women to be as proactive as possible about staying healthy, I believe her life could have been saved.
Nancy is in grim company. Seventy percent of ovarian cancer patients aren't diagnosed until they are in Stage 3 or 4. Had she been diagnosed earlier, at Stage 1 or 2, her five-year survival rate would have been as high as 94 percent.
And Nancy could have been -- should have been -- diagnosed early. All it would have taken is a yearly screening at her gynecologist's office. But women are not routinely screened for ovarian cancer during checkups, even though symptoms are so stealth and subtle -- bloating, indigestion, some tenderness in the abdomen -- (are you worried yet?) -- that many women, and even doctors, don't spot them. And by the time you have these symptoms, it may already be too late.
Many doctors -- who mean well and who are doing their best to cope with an avalanche of medical epidemics, in a society with patients who are getting older and heavier -- will tell you that the math on screening every woman in America just doesn't make sense. The logic goes like this: Given how rare ovarian cancer is, screening everyone adds a lot of cost to the system and exposes women to false positives. This leads to potentially intrusive biopsies and maybe even unnecessary surgeries and perhaps worst of all -- gasp! -- unnecessary distress!
What about the distress of having to tell your children -- as Nancy will have to -- that you may not see them graduate or marry, and will surely never meet their children? Of having to plan, with your husband, your own funeral, and decide which fleeting and harder-to-achieve pleasures you want to spend your final months on? (Can you make a drive to the beach with your oxygen tank in the car?) Surely most women would rather tolerate a few anxious days coping with a false positive instead, if given this choice.
The catch-22 of ovarian cancer screening is simply intolerable at this point in this country's medical knowledge and capabilities. We screen for many diseases that only a relatively small percentage of men and women will ever get, on the theory that an ounce of prevention is worth a pound of cure. Why is ovarian cancer -- currently the deadliest of gynecological cancers -- still treated as though it's some rare virus caught on the surface of Mars? More than half the population has ovaries and fallopian tubes, and that makes all of us potential patients. Sure, a family history of ovarian cancer may get you covered for screening, but plenty of women -- including Nancy -- don't have any family history. Until their own diagnosis makes them the first in line.
An easily executable screening method available today -- a transvaginal ultrasound -- costs about $100. (Is it perfect? No. Show me one medical test that is. But it is most definitely better than no test at all. Just ask women whose tumors have been found with one. And no, a Pap test or pelvic exam won't detect ovarian tumors.) Compare that to the costs of treating one patient with ovarian cancer, which is between $200,000 and $300,000, and many of those women will die quickly, regardless of these last heroic medical efforts.
And yet cancer research money is doled out by head count of those affected, which means the pipelines of ovarian cancer research remain dry. Thomas Herzog, M.D., director of the division of gynecological oncology at Columbia University Medical Center, says: "Considering the incredible mortality and devastation of ovarian cancer, we don't fund the research on this disease commensurate with the damage it causes."
September is National Ovarian Cancer Awareness Month, and all women -- and anyone who loves one -- need to stop taking false comfort in the relative rarity of ovarian cancer. I ask you to think about Nancy, who is now making the agonizing decision about whether she should stop her chemotherapy -- which is no longer helping and only setting her up for pneumonia -- and allow her new inoperable tumors to grow quickly and unabated. Soon, breathtakingly soon, the only decision left to her, her husband and her children will be where to have her hospice care.
This simply has to change. The fact that ovarian cancer survival rates haven't improved in 30 years has to change. And women need to be the ones to get educated, get angry and get vocal. Don't let an insurance company, or the offensive logic of "it doesn't kill enough people each year," stand in the way of us all getting a screening test we deserve. This September, join forces with the many excellent groups (the National Ovarian Cancer Coalition, the Ovarian Cancer Research Fund, the Ovarian Cancer National Alliance) working to educate the public about this senseless killer.
The life you save may be your own.
Rev. Amy Ziettlow: Psalm 46 and Living After the Death of a Loved One
Yes, it's wonderful to be alive. My recent experiences have shown me that no matter what you're going through, you can still find joy and peace - and something to laugh about when you most need it! Even in the midst of fear and uncertainty.
I guess I don't know what everybody is talking about when they say that CA125 can give false positives, when I know they give numbers instead. The number after my hysterectomy gave me my base line, so every number after that has to compare to that. It measures the proteins in the blood like a marker, so I don't want that number to double or more since my last checkup.
I believe that this simple blood test can save alot of women's lives, just like a mammogram can do and insurances should put this on their screening checkups along with pap smears, pelvics, prostates, etc. It's a shame that they don't.
So sorry for your friend that it was found too late.
I believe that something should be put in place for testing for ovarian cancer, just as there is for breast cancer.
I also had kidney cancer two years ago, it was found due to an emergency situation and would not have been detected under normal circumstances.
Something needs to be in place to save lives, I am one of the really lucky ones.
Note: If you DR. wants to use the CA-125 test results to monitor your cancer.make sure he uses the same lab each time, because tests from different sources skew the results.
In fact, a multi-year study of almost 80,000 women showed that annual CA-125 tests for six years and annual ultrasounds for four years helped diagnose more women but did not save lives. False positive tests did not necessarily cause psychological harm, as this article implies, but rather physical harm through unnecessary surgery and associated complications from those surgeries. These are not minor risks; some women died as a result of unnecessary surgeries.
At the Ovarian Cancer National Alliance, we know of women who are at high risk of developing ovarian cancer, and have opted to be followed closely with the existing tools. Unfortunately, even they present with late stage ovarian cancer.
The current tools we have are just not appropriate for annual screening. This is unfortunate, as women diagnosed in early stages of ovarian cancer live longer than those diagnosed in later stages. However, we cannot advocate for policies or practices that are not firmly rooted in the science. Instead, the Alliance urges continued investment in the science so that we can develop better, accurate tools.
Cara Tenenbaum, Ovarian Cancer National Alliance
I live in a very small, rural community, yet since I was diagnosed, I've known at least 6 others in this small community who've been diagnosed with ovarian cancer (and they have all since passed away). I thank God I'm here. I don't care if insurance won't cover it, I'm now having our daughters (22 and 30) tested yearly with the CA-125, and with ultrasounds. It may give a false positive, it may not identify all ovarian cancers, but at least it is a start.