Tuesday, October 7, 2008

Ovarian Cancer Awareness: My Journey Continues...

It’s been rainy and overcast here for the past week, and it’s sometimes felt a bit more like late spring than fall. On Friday September 26, I went to the gynecologist for my annual checkup. For the last few years, this process has involved the following of an ovarian cyst also.

That same day Paul Newman (one of my favorite actors) lost his battle with cancer. In the morning, I was back at the gynecologist, trying to figure out once again if a cyst that’s been inside my right ovary for about four years now could be suspicious.

I’ve been living in the medical gray zone known as “watch and wait” for a few years now. My doctor discovered a complex cyst in my ovary, and it’s been followed ever since with ultrasounds (and even an MRI). “Following the cyst” is what doctors do when the cyst doesn’t immediately look like cancer, but needs to be further evaluated with repeated tests like ultrasounds.

I’ve lost track of exactly how many transvaginal ultrasounds I’ve had in the last four years. I’ve had at least six, maybe ten? I was ecstatic about a year ago, when my gynecologist said my CA 125 blood tests looked good and so did my ultrasounds, and we didn’t have to follow me with any more ultrasounds, unless the cyst started bothering me and I had symptoms.

During this last visit, the doctor changed her mind and ordered more tests. So this morning, on a beautiful, bright sunny day I headed off to Northern Dutchess Hospital (NDH) in Rhinebeck for another ultrasound. I’ve really come to dread the tests, so I wasn’t looking forward to it at all. Transvaginal ultrasound can hurt, depending on the skill level of the technician, and it’s invasive and I have to drink a lot of water, too.

It’s hard to judge how much water to drink for a full bladder, needed for the transabdominal portion of the ultrasound. I was supposed to drink two 16 ounce bottles of water, but I didn’t drink that much. The very first time I went for the test, I drank everything they told me, and then I had to sit around and wait. As my bladder got full, it felt so painful! It was agony! So a guy in radiology told me to go in the bathroom and “let a little out.” No easy feat when your bladder is about to explode, to just let a little bit out!

When I was an ultrasound newbie, it was hard. So I’ve learned to only drink what feels comfortable to me, just enough for a full bladder. If I am taken right away, it’s not too bad, the waiting. The only really painful part, in my opinion, is when they roll the ultrasound over your tummy, to take pictures of the ovaries (it’s necessary to have a full bladder for this portion of the sonogram.)

Then there’s that blissful moment of relief when you can finally go to the bathroom after drinking all that water. Then it’s back on the table for part two, the transvaginal portion of the test. A wand is inserted vaginally that gives a very detailed picture of the uterus and ovaries. This is gives a much clearer image than the abdominal ultrasound, but they always do both tests.

I scheduled my ultrasound for a really early time, the first slot at 8 AM, just to get it over with. The hospital has a new Dyson Center for Women, and it was so comfortable and modern. It seemed to me that this is the way medical care should be for women. Other times I’ve had the ultrasounds, it was done sometimes by a man, in a hot cramped room where I had to go down the hall to use the bathroom, then come back to the room to finish the test. It’s not necessarily a bad thing that a man does the test, it’s just that it feels so personal and invasive, I like it so much better when a woman does the transvaginal ultrasounds.

NDH has created this really nice, professional setting where women can get mammograms and things like pelvic ultrasounds. So my transvaginal ultrasound was still invasive and uncomfortable, but not that bad! I left the hospital with a good feeling. If you are facing something like an ovarian cyst, I encourage you to investigate your options and find a doctor and a hospital you can feel really good about.

It’s really nice to know that such institutions exist. The only shocker today was the bill! I don’t have insurance, so I found out I could see the cashier on the way out and get a discount for paying the hospital right after the test. As a writer, I’ve found it’s always this balancing act, not having things like insurance, wondering how the bills will get paid. I was able to pay, but scratching my head at the very high cost of medical care in our country.

I’ve read about the costs of transvaginal ultrasound, and heard a figure of about $250. I also had transabdominal ultrasound too, but the cost of both tests today was at least a rent payment in the Hudson Valley. That’s really one of the downsides of freelancing, wondering how to meet things like unexpected medical expenses. Last time I had an ultrasound I had insurance; now, I don’t have any.

So that’s been on my mind. And what will the doctor say about the results of this test? Did my cyst grow or change in some way? Is cancer now clearly visible? Will I need more CA 125 tests? (a test that monitors blood protein levels and is a marker for ovarian cancer). Do I need laparoscopy? Will I lose my ovary? Will I need to turn around and have another ultrasound next month, or god forbid, another MRI?

All these thoughts swirled around my head as I drove home from Rhinebeck. That’s life sometimes in the “watch and wait” period. I suppose I could put an end to it all, by asking for surgery to evaluate and biopsy my ovary. But no doctor has ever felt that strongly about me having an operation. They leave it up to me. Saying things look okay in their opinion, but they’re not one hundred percent sure I don’t have cancer.

Actually, it’s really hard to detect ovarian cancer sometimes. The signs and symptoms can be very subtle and are often disregarded, misdiagnosed or overlooked. Ovarian cancer is often diagnosed in the late stages when the prognosis isn’t very good and survival rates are low.

As I chatted with the technician giving me the ultrasound today, I mentioned that September is Ovarian Cancer Awareness month. She said “Oh really? I didn’t know that, I just know about pink ribbons and breast cancer awareness in October.” It occurred to me, if a person working in women’s health at a respected hospital doesn’t know about ovarian cancer awareness, does the average person know much about ovarian cancer?

I think we really need to get the word out about this disease. There are women all over the country being monitored like me, and there are lots of frightened women who have been diagnosed or are experiencing symptoms but don’t know where to turn for information and treatment. We really need to start talking more about ovarian cancer awareness. We also need a specific screening tool for the disease (right now, we just have things like CA 125 tests, manual exams, and transvaginal ultrasound).

It’s really hard to believe that I could have no symptoms and no pain, but still have to go through all these tests and then sweat it out, trying to learn if my cyst might be suspicious. But since ovarian cancer is so subtle, I’m willing to be monitored and glad I’ve found a doctor who will order these tests and watch the cyst for anything abnormal.

I urge you to increase your ovarian cancer awareness. If you’d like to hear more of my story, I’ve written two articles on this subject. Click here to read my personal story of ovarian cancer awareness:

Click here to read an earlier story I wrote about my ovarian cyst, and learn the signs and symptoms of ovarian cancer:

I’ll be writing more articles this fall about ovarian cancer awareness, and how to join the fight for a cure. {**SPRING 2012 Update: 8 years later, still being monitored for ovarian cancer, via "watch and wait"...my last tests showed my right ovarian cyst had not changed since 2006. For more about my journey to ovarian cancer awareness, my book "Soul Tripper: A Journey of Awakening" has a whole chapter devoted to my struggles to get a diagnosis about my ovarian cyst, as well as what I learned through the process. Click on the "Soul Tripper Book" section of this blog for more info}.