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Barbara Hannah Grufferman

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A Call to Action: It's Time to Silence the "Silent Killer" of Women

Posted: 09/27/11 01:30 PM ET

If you knew there was a killer on the loose that was attacking over 21,000 women every year -- with close to 15,000 of them dying as a result -- wouldn't you demand that the government spend as much money, manpower, energy and intelligence as necessary to find the killer and bring him down?

What if you realized there wasn't remotely enough money or research behind the effort to effectively stop this killer in his tracks?

What if you discovered that the killer actually left clues, giving many of the victims some advance warning?

And, what if you heard that many women -- and their doctors -- who were given a heads up either ignored the signs, or confused them with other possibilities, until it was too late?

This is a typical scenario surrounding ovarian cancer, and the statistics haven't changed much in over 30 years, when the "War on Cancer" was first declared. It is drastically under-funded especially when compared to the number of women it attacks and kills each year. Essential research to prevent, screen and effectively treat ovarian cancer -- which is still the deadliest of all gynecologic cancers -- lags behind many other diseases.

My friend Karen's mother succumbed to ovarian cancer just a few years ago. Like far too many of the other women who are diagnosed each year, Karen's mother experienced the symptoms of ovarian cancer, but mistook them for the intestinal discomfort she had experienced most of her life. Karen told me:

My mother was a classic textbook case. For much of her adult life she had battled lower intestinal issues. Constipation and serious bloating were a constant. Even after years of consulting with different doctors for yet more opinions, ovarian cancer was never, ever discussed. It was not until she was stage IIIC, when a very large tumor was detected during another consultation with a gastroenterologist. He found the tumor on an x-ray he had requested of the pelvic area.

Even though the signs were there, and she was in her 70s (the median age for women who are diagnosed with ovarian cancer is 63), doctors assumed her growing discomfort was from her intestinal problems, but they were wrong. In addition, she had a hysterectomy 20 years before being diagnosed, but her ovaries, which were healthy at the time, were not removed. At no point in all those years did any doctor suggest that Karen's mother be vigilant about the signs of ovarian cancer, or urge her to get the special tests to potentially diagnose ovarian cancer.

According to Dr. Margaret Nachtigall, a leading reproductive endocrinologist in New York City:

Ovarian cancer has always been called the "silent killer" because symptoms were not thought to develop until it was too late. However, recent studies show that this term is inaccurate, and there are specific symptoms that are much more likely to occur in women with ovarian cancer than women in the general population.

It is called a "silent killer" because for too many years, ovarian cancer was simply not on anyone's radar screens, including that of the medical community, contributing to the high mortality rate. It's time to take charge of your body, and help change the statistics.

In honor and memory of Wangari Maathai, the first African woman to win the Nobel Peace Prize and who succumbed to ovarian cancer this week, and to acknowledge September as National Ovarian Cancer Awareness Month, it is probably the most appropriate time to review this list of symptoms, risk factors, early detection tools, treatments, and guidelines on when to tell (not ask) your doctor that you want the "early detection" tests performed. Listen to your body, be vigilant of changes, and demand medical attention when you know it's required. It's your body. Yours. And you are your own best advocate.

According to the American Cancer Society and the Ovarian Cancer National Alliance, here are the most important things you need to know:

Possible symptoms of ovarian cancer, especially when experienced together and for several weeks:

  • Bloated for no reason
  • Pelvic or abdominal pain
  • Back pain
  • Abdomen has increased in size
  • Difficulty eating or loss of appetite
  • Losing weight without reason
  • Frequent and regular indigestion
  • Urinary incontinence
  • Constipation
  • Extreme fatigue

Many of these symptoms mimic common intestinal ailments, which was the case with Karen's mother. Always have these symptoms checked by the appropriate doctor, even if you've always suffered from the discomfort of intestinal issues, but especially if they come on suddenly and don't go away after a few weeks. Do not delay.

Possible risk factors for developing ovarian cancer include:

  • Have never been pregnant
  • Had first pregnancy after age 30
  • Never used birth control pills
  • Over age 50
  • Have women in family who have had cancer
  • Inherited gene mutations (BRCA1 or BRCA2)
  • Infertility
  • Started puberty before age 12
  • Experienced menopause after 55
  • Used Hormone Therapy to combat menopause symptoms

Is there a link between ovarian cancer and obesity?

This connection has been studied for many years, with conflicting results. However, it seems as though a surplus of estrogen produced by fat cells in the body may be driving an increase in ovarian cancer in women who are considered obese (BMI of 30 or more). According to Dr. Nachtigall, a 2009 study found that obesity was associated with an almost 80 percent higher risk of this cancer in women ages 50 to 71 who had not taken hormones after menopause -- another excellent reason to maintain a healthy weight, especially after 50.

There are no screening tests for ovarian cancer, as there are for other cancers, but there are "early detection tools." Not only do researchers need to develop an early detection test for ovarian cancer, like mammograms for breast cancer and pap tests for cervical cancer, but women and medical professionals need to become more aware of ovarian cancer symptoms.

The most effective "early detection tools" available right now include:

  • Transvaginal ultrasound - a procedure used to examine the vagina, uterus, and fallopian tubes
  • Blood test - a test that measures the level of CA-125 protein in the blood, which might be a sign of cancer. Although the CA-125 blood test is more accurate in postmenopausal women, it is not a reliable early detection test for ovarian cancer. In about 20 percent of advanced stage ovarian cancer cases and 50 percent of early stage cases, the CA-125 is not elevated even though ovarian cancer is present. As a result, doctors generally use the CA-125 blood test in combination with a transvaginal ultrasound.

While most doctors would recommend these tests on those women who are considered high risk, many doctors, including my own, routinely perform these tests on women over fifty during annual gynecological exams. Discuss these with your gynecologist at your next visit.

What's on the horizon?

There are not enough funds to put behind this dreadful disease. We need more money, and more brainpower focusing on this not-so-silent killer. But, for now, there are a few tests and tools that are being studied, any one of which, or all, could end up being the magic bullet women so desperately need and deserve. Visit the Ovarian Cancer National Alliance website for updated information about new tests, drug trials, and studies.

Women can reduce the risks of getting ovarian cancer if they:

  • Are extremely alert to changes in our bodies and report them to our doctors
  • Insist on getting transvaginal ultrasounds at annual exams
  • Use oral contraceptives
  • Choose have your ovaries removed (after careful consideration)
  • Maintain a healthy weight, and eat a diet high in vegetables and grains, and low in fats

Ovarian cancer has the potential to kill, so you need to defend yourself:

  • Demand that your doctor perform -- and your insurance company pay for -- the transvaginal ultrasound and the CA-125 blood test at every annual gynecological exam.
  • Keep your weight at a healthy level and move your body every day
  • And the most important defense of all: Listen to your body. It will tell you if there's something wrong.
Staying connected is a powerful tool. "Friend" me on Facebook, and "Tweet" me on Twitter (BGrufferman). For more information on living your best life after 50, please visit www.bestofeverythingafter50.com. Be well and stay in touch.
 
 
 

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HopeWFaith
We the People
12:29 PM on 10/02/2011
Now this is a headline and an article I can respect. Thank you.
03:48 PM on 09/29/2011
I hope to see a similar article on the deadliest cancer of all, pancreatic cancer, during Pancreatic Cancer Awareness Month, November. Educating the public on the seriousness/stats of this cancer and on its poorly-funded research is VITAL.
02:40 PM on 09/29/2011
I don't have ovaries but I do visist and get a pelvic checkup and get the tests done for my sanity/health.Many female OB?GYN are not as sensitive like the male doctors.I have all female doctors and they are not sensitive and I don't know if its their foreign culture.My thoughts are be diligent in your own health and push our girls and boys in this country to enjoy becoming a doctor .We should have a camp starting at 10 years old exposing them how to dissect frogs and looking at bones etc they all moms can stay calm about.We are getting so many PA and the public think they are doctors.Lets not forget the DO"s Osteopathic and they are called doctors with all these HMO's.
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02:11 PM on 09/29/2011
Something we should also take with us to the polls in November of 2012. If the Republicans win the election, they will roll back whatever health reforms there have been and even MORE WOMEN WILL DIE because they won't have the money or coverage to get early detection.
tccat4
We all have a right to our opinion, like it or not
01:38 PM on 09/29/2011
One thing they left out, You will notice your hair falling out, This was one of the clues I told my Dr. It took a year and numerous medical people to figure out I had the big "OC", this was before the blood test CA-125. I suggest that anyone knowing their body and have some of the symptoms, stay steadfast and demand that testing be done. It saved my life.!!!!
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HUFFPOST BLOGGER
Barbara Hannah Grufferma
author, The Best of Everything After 50
03:37 PM on 09/29/2011
Thank you for sharing this information, and your story! All the best to you, and keep in touch,
Barbara
11:31 AM on 09/29/2011
So very important for every woman to read this!
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HUFFPOST BLOGGER
Barbara Hannah Grufferma
author, The Best of Everything After 50
03:37 PM on 09/29/2011
Thank you, Donna . . the best thing we can all do is make sure that women see this. Share, share, share!
Thank you for reading . .
Barbara
HUFFPOST SUPER USER
dbrockskk
07:27 AM on 09/29/2011
you're kind of forgetting thousands of women have no health insurance.
HUFFPOST SUPER USER
myopinion101
11:45 AM on 09/29/2011
your absolutely right...I don't have it either and when I did, anything i went to the doctors for was denied because I have had asthma since age 3 and was honest on my application for insurance...so every illness was always a pre-existing condition and a huge fight with the ins company and always having to report it to the state insurance commission sometimes they had to pay, and sometimes not!! So I couldn't afford the monthly payments and pay the bills at the doctors office! And since my mother was just put in remission from stage 3 ovarian cancer 5 months ago! she was lucky enough to catch it early!!! I pray to god I'm not next! this is a horrible thing women are faced with everyday!
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dbrockskk
07:26 AM on 09/29/2011
right. like I'm going to demand my insurance company do anytthing.
07:18 AM on 09/29/2011
Very informative article – it always seems as if breast cancer gets all the press, and yes, it is very important, but there are other diseases just as serious, if not more, such as ovarian cancer which as noted does not have obvious warning signs until it's too late (unlike breast cancer, where with routine exams, a high percentage of cases can be caught in time...) I'm in my 40's, and for the past few years have been suffering with uterine fibroids, cervical polyps, ovarian cysts - the whole gamut! I've had a hysteroscopy done and also an endometrial ablation to no avail; so I do get concerned that these ongoing issues may turn into ovarian cancer (not that they're known to - it's just my own fear..). I've had numerous trans-vaginal ultrasounds, and they're quick & painless, so it would be great if they were mandated annually like mammograms, but the way the insurance co's. are gouging our benefits, we'll be lucky if they continue to cover our annual GYN exams (especially with the current political 'trend,' I doubt if ANYTHING will be covered for us ‘decrepit’ old people)!
07:56 PM on 09/28/2011
Thank you so BARBARA- I too have lost friends to this terrible disease. Wish I knew how to hook up w/ sponsor - like maybe SPANX to create some kind of donation program which would get high profile coverage and perhaps match funding...ANYBODY????
05:13 PM on 09/28/2011
Barbara- Thank you for the informational article on ovarian cancer. You have provided very important information for women. However there is even more alarming information regarding the increase in lung cancer among women.

The American Cancer Society estimates that in 2011, approximately 740,000 women are diagnosed with cancer per year as of 2011 and of that somewhere around 270,000 will die. The leading cause of cancer deaths for women is lung cancer (approximately 72,000).

About 21,990 new cases of ovarian cancer will be diagnosed and 15,460 women will die of ovarian cancer in the United States. This is significant but;

Alarmingly I am concerned and questioning why according to the American Cancer Society, in the U.S. that leading cause of cancer deaths for women is lung cancer.
There are approximately 25 million women smokers in the U.S. that number is doubled from 10 years ago. It appears that there may be a gene that women have that may actually accelerate lung cancer. Teen girls start smoking because their mothers and peers are smoking. It is a difficult habit to stop for some and as mothers we need to start setting examples for teen girls. Women need to quit smoking!
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HUFFPOST BLOGGER
Barbara Hannah Grufferma
author, The Best of Everything After 50
03:39 PM on 09/29/2011
Thank you so much for your thoughts here. Yes, lung cancer is the #1 "cancer killer" of women (the #1 killer being heart disease). The good news is that a new report shows that smoking is declining in this country (or at least didn't increase). But, still, this is a huge medical problem, especially for women.
Thank you for reading . . .
Barbara
08:03 AM on 09/28/2011
Thank you for this!! I am due for my anual exam next month and this is very useful information!! I am so glad I heard of you through our friend Megan and so very glad to have your book!!! You REALLY have changed my life in such a positive way!!! You are truly a very important source of info and inspiration. As many of us have, I also lost a close friend due to this horrible disease, I also had a hysterectomy but still have my ovaries. This is why I am so glad you posted this!!! I will talk to my Doctor when I go in!! Thank you!! Thank you AGAIN!!!!
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HUFFPOST BLOGGER
Barbara Hannah Grufferma
author, The Best of Everything After 50
09:42 AM on 09/28/2011
Thank you for reading and commenting, Carol. It seems that so many of us know someone who has succumbed to this horrible cancer. We really need to change these statistics. Whenever my children are feeling sick, I tell them to lie down, close their eyes, and take a mental journey through their bodies from the tops of their heads, to the tips of their toes, and everywhere in between . . . and to really FEEL what their bodies are saying. I encourage all women (and men) to do this regularly, especially if something just doesn't feel right.
all best, Carol . . .
10:43 PM on 09/27/2011
I lost my sister to ovarian cancer three years ago and my best GF 23 years ago. Both stage 4 both chose different paths of treatment both died in their fifth year. My GF was diagnosed giving birth to her first child at 36 she was told by five medical institutions she had five years either way. I actually wrote a blog about her just last year. Since that time I demand transvaginal ultrasounds, I have private insurance I just pay for them because Ins claims they are not necessary. I believe Health Insurance should be preventative but you see they make more money when you get sick. I also believe that a woman by age 50 should see a GYN in oncology and sooner if this cancer is in a family line~this is not an easy task because most require a referral and even then your insurance company will go wild. Now my sister was a different story she started with breast cancer went into remission had ovarian systems but they just told her it was medical onset of menopause from the breast cancer. Very sad because none of the tests showed anything until two years passed. This is an excellent article all women age 45 and up should do everything this article is telling you to do. Make a copy of it bring it on your next exam. Make them do it~it is your life not theirs to guess with.Thank you Barbara for getting the word out.
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Kathleen Riley-Daniels
Author. Artist. Photographer.
08:25 PM on 09/27/2011
Such important information. Thanks for putting it out there.
07:23 PM on 09/27/2011
This is the most informative women's health issue I've ever read on Huffington Post. Thank you for posting it.
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HUFFPOST BLOGGER
Barbara Hannah Grufferma
author, The Best of Everything After 50
08:07 PM on 09/27/2011
Thank you for reading, and commenting. Please share this with every woman you know. Knowledge is power, especially when it comes to this dreadful disease.
All best,
Barbara