My Journey to Ovarian Cancer Awareness

Last Friday, Paul Newman, one of my favorite actors, died after a long battle against cancer. That same day, I also received some unsettling news: a cyst inside my ovary, which my doctors have been “following” for about four years now, would have to be looked at again with yet another sonogram.

Cancer’s been on my mind again this fall. Since my gynecologist has been working with me to diagnose my ovarian cyst, cancer drifts in and out of my consciousness sometimes, as a fleeting thought during the day that I push out of my mind, or a cold dread that presses on me while I try to go to sleep at night.

September was Ovarian Cancer Awareness Month, and as the days rolled by on the calendar, I’m always astonished at the small amount of media attention devoted to this disease. However, the magazine “Ladies Home Journal” featured a comprehensive article about ovarian cancer in its September issue this year. It was fantastic to see such an in depth look at ovarian cancer, with encouraging news about new research and possible treatment options.

The information in this Ladies Home Journal article confirmed what I’d already suspected: the survival rates for ovarian cancer are much worse than those for breast cancer, yet a lot more money is earmarked for things like prostate cancer research and breast cancer research than it is for research into ovarian cancer.

I’ve learned that while pink ribbons are everywhere, and breast cancer awareness is ubiquitous, ovarian cancer, no matter how lethal and devastating, remains very much under the radar of most people. (By the way, do you know the color of the ovarian cancer awareness ribbon, and the slogan for ovarian cancer awareness? I confess that I didn’t, not until ovarian cancer awareness touched me personally.)

Until about four years ago, I was as completely in the dark as a lot of people are about ovarian cancer awareness. I began to experience some unexplained bleeding between menstrual cycles, so I checked with my family doctor. She ordered one ultrasound, then another, and referred me to a gynecologist for a more in depth look at the problem.

This began my personal odyssey of trying to find a caring, capable doctor. Unfortunately, the gynecologist I was referred to was quite rude, rough with my body, and unconcerned about my condition (she was also, I found out, the “hottest” trendiest doctor in town.)

I remember a turning point for me in my medical care, the time I decided to become really proactive as a patient with rights to good, competent treatment. In order to diagnose my bleeding, this doctor did an endometrial biopsy (an exceptionally painful and traumatic test) right there in her office, with no warning to me about the pain. She gave me no anesthesia, no painkillers, no after care. I was not prepared for the pain of what felt like a gigantic depth charge going off in my uterus as she worked on me. After the test was over, she removed the cause of the bleeding: a uterine polyp (also extracted that day without any painkillers or after care.)

That was my last visit to that doctor, and I began to educate myself about patient rights. Unfortunately, my journey to discover if I have ovarian cancer was just beginning. The ultrasounds to check out the bleeding had revealed a small cyst within my right ovary. It is not uncommon to have cysts that form and go away across the menstrual cycle; however, my cyst was a complex one that remained in my ovary over many months and many ultrasounds.

Exactly what kind of cyst was within my ovary, and was it suspicious? Without a gynecologist, I bounced around looking for diagnosis and treatment, back to my family doctor and even once to a breast surgeon, seeking some advice and answers.

Since my cyst didn’t definitively look like cancer, I entered a period that doctors like to call “watch and wait.” It’s a gray area where cancer can’t be detected easily, so the ovarian cyst is “watched” and monitored for small changes that might signal an abnormality or inconsistency.

I eventually found a wonderful holistic gynecologist to monitor me. This watch and wait period involved countless transabdominal and transvaginal sonograms over a period of years. The ultrasound that is passed over the stomach often doesn’t provide enough information about ovarian cancer, so the internal ultrasound (with an instrument inserted into the vagina that maps out the ovaries) is considered much more effective in diagnosing problems with ovarian cysts.

I’ve really come to dread these transvaginal ultrasounds. Even though it’s a “painless” procedure, depending on the person who performs the test, it can hurt a lot. I was so thrilled about a year and a half ago, when my doctor said all my tests (including an MRI) looked good and she didn’t think I’d have to have another ultrasound, as long as my CA 125 tests were also good (the CA 125 screens levels of a blood protein thought to be higher in women with ovarian cancer.)

So I was really surprised during this last visit to the gynecologist, when she said we’d hold off on the CA 125 test until I had a new ultrasound. True, I hadn’t seen my doctor for well over a year, but I was taken aback at the thought of starting a new round of tests. In my heart, I know it’s for the best, but I enjoyed that time when monitoring my cyst wasn’t part of my life, when I didn’t have to run to the hospital for uncomfortable, invasive tests, and then wait for the phone to ring with the results.

In a way, I’ve realized how lucky I am. Women all over the country right now are in desperate need of ultrasounds and the CA 125, but they’re at the mercy of doctors who for one reason or another won’t order these tests. Early diagnosis and treatment of ovarian cancer are vital to beating the disease; however, most ovarian cancer is diagnosed in the late stages when survival rates are dismally low for this cancer.

As we lose more and more people to all kinds of cancers, I think it just underscores the need to concentrate on finding a cure for this disease, as well as diagnostic tools for things like ovarian cancer and improved treatment options. We currently do not have a screening tool for ovarian cancer. Those who are having symptoms of the disease, have a family history of the disease, or have some reason (like me) to believe they might have cancer, are given a manual pelvic and rectal exam, then transvaginal ultrasound and the CA 125 test. All of these can help detect ovarian cancer, but they aren’t infallible and they are no substitute for a screening tool for ovarian cancer.

Ovarian cancer is the kind of disease that tends to fly under the radar of your consciousness, until it affects you or a loved one, and then it’s like a wakeup call to the horrors of this devastating killer. If you would like to increase your ovarian cancer awareness, there’s a lot you can do. (The color of the ovarian cancer ribbon is teal; the slogan for ovarian cancer awareness is “ovarian cancer whispers, so listen.”)

Learn the signs and symptoms of ovarian cancer, and support legislation for increased funding for a screening test for ovarian cancer. Also, consider buying teal ribbon products to fund ovarian cancer research and awareness. (A great place to start your journey to awareness is the Ovarian Cancer Research Fund at www.ocrf.org).

So my odyssey continues, as I try to find out whether my ovarian cyst is suspicious, or could possibly be a problem one day. While I dread having more tests right now, I feel fortunate to have found a doctor who will follow my cyst and not just brush it aside (I feel this might just save my life.)

If the cyst has grown, I’m considering having a surgery called laparoscopy to remove it and biopsy it. Read my upcoming articles about ovarian cancer awareness if you’d like to educate yourself about this deadly disease, and learn how you can join the fight for a cure.