HealthStories

The PapSmear does not test for ovarian cancer. In fact, there is currently NOT an accurate screening test. Wait! What?! That’s right…that’s not a typo. When you go in for your annual visit, you are NOT being screened for ovarian cancer; the PapSmear tests for cervical just like the mammogram tests for breast. Let that sink in while I share how I came to know this bit of info.
In July of 2009 I had just returned home from a bucket list trip to France. While there, I had some severe cramping. I thought it was the rich French food. Or it could have been that I was about to start my period. When I came home, the pain continued. It was off and on but when it was on, it was on. I remember one day my husband and I were driving and one of the pains came on and it was so intense, I asked him to pull over and just stop the car. He told me this was not normal, and I needed to really see someone about this. I made an appointment with my gynecologist.

When I went to see her, she ordered a transvaginal ultrasound. I had always envisioned an ultra sound being done on my belly, so I was incredibly surprised when asked to put my feet in stirrups and slightly terrified when the tool (that had what looked like a condom on it) was presented and used for capturing images of my insides. As I lay there, feet in stirrups with a giant dildo taking photos of my insides, the imaging tech said…and I quote: “Oh my gosh! Oh my gosh! How are you even able to walk?!” I was like what is it? What do you see? She said, “the doctor will have to go over the results with you.” Are you freaking kidding me?! I saw the doctor immediately after. She told me I had a large cyst, the size of a grapefruit on my right ovary. Normally people gasp when I say this. But I was diagnosed a few years prior with a condition called, PCOS. So, for me to have a cyst wasn’t that big of a deal. She scheduled me for surgery to remove the cyst. A few days later, the doctor called me. She told me she had run
a blood test on me and that my numbers looked a bit high. The blood test was called a CA125. She said she felt more comfortable referring me to a Gynecologic Oncologist. This was the first time I had ever heard of an oncologist. I had no idea. The weekend before my appointment, my sister and I went to a wedding. We drank beer and danced the night away. It was a really fun night until what felt like a severe UTI hit me and I was in absolute misery. My sister dropped me off at went home. The pain from the need to go to the bathroom was unbearable. So, my husband called the 800# on the back of our insurance card. The nurse suggested we go to the emergency room. It was after 11 on a Saturday night. I put on the baggiest pants I could find. At the time I was a size 6, but I had some loose-fitting capri’s (you know from the fluctuating weight clothing pile). They were a size 10 and fell loosely around my hips. We went to the hospital, calling my mom along the way. The nurse at the front desk was a total beeotch. She totally dismissed us and basically was like, “take a number”. So, we began our wait. And I don’t think I have ever felt like I was as close to death as I did that night. The pain became so unbearable I could barely walk. I would go into cold sweats, hot sweats. MY husband and mom pleaded with Nurse beeotch to please just insert a catheter. But she wouldn’t. The pain became so bad, I literally laid on the emergency room floor of a very public hospital on a Saturday night. And just before, I think, passing out from the pain, a nicer nurse came to grab me. She helped me to my feet and at this time, I couldn’t even button my size 10 pants. To give you an idea of how much fluid I had in my bladder, the second…the actual second that a catheter was inserted, I released 1.5 liters of fluid. The beeotch was a full throttle jackass up until this moment. Her need for authority and to be ‘in charge’, almost cost me my bladder function. I had to wear a portable catheter for 2 weeks because my bladder was so stretched out. Because my bladder was jacked, I also had to delay my surgery to remove my cyst….thanks lady!

I was actually released from the emergency room Monday morning and went directly to my gynecologic oncology appointment. The doctor laid out a few options: 1) remove the cyst and possibly the ovary; 2) remover the cyst, the ovary and may find some cancer meaning both ovaries may need to come out; 3) may find advanced cancer, remove both ovaries and parts of your colon leaving you with a colostomy bag. I was in shock. How do you even prepare for that?. I remember waking up from surgery and asking if I had an ovary…because if I had an ovary, that meant I could still have kids and that the likelihood of having cancer was minimal. The nurse said yes. You still have one ovary. I was so happy. I spent five days in recovery. And on the day I was being released, my doctor came into my room and said something I will NEVER forget. “Your pathology report has come back. You have a very aggressive form of ovarian cancer. We need to schedule you for a radical hysterectomy right away! I didn’t want to take both ovaries without being absolutely sure.” The
doctor left. I buried my head into my pillows and blankets. I screamed. Then I cried a big nasty ugly cry with huge crocodile tears.

Two weeks later, I had a radical hysterectomy. A few weeks later I started chemotherapy. I did 6 months of chemotherapy. I have been cancer free since February 2010.

Before I was diagnosed at 32 years old, I had never even heard of ovarian cancer and my immediate thought when I did hear about it was, “isn’t that something old people get?!” The more I learned, the more I was freaked out. The American Cancer Society estimates that over 22,000 women will be diagnosed with ovarian cancer while 14,000 women will die from the disease. While the 11th most common cancer among women, ovarian cancer is the fifth leading cause of cancer-related death among women and is the deadliest of gynecologic cancers. A woman's risk of getting ovarian cancer during her lifetime is about 1 in 78. Her lifetime chance of dying from ovarian cancer is about 1 in 108. The 5-year survival rate once diagnosed is 46.5%. Some families have genetic history of ovarian or breast and there is genetic testing you can take to determine if you are at risk.
So why the heck are we not talking about this? Why don’t women know there is not an accurate screening test? Why is there not an accurate screening test? I don’t have the answers to these questions however, I am now armed with the knowledge of the symptoms. And I now know I must be my own advocate. Ovarian cancer is often referred to as a silent killer because the symptoms mimic what, we as women, face monthly. It is easy for us, and doctors, to dismiss the symptoms or pass them off as something else.

 

When caught in early stages, ovarian cancer (in most cases) is 90% more treatable. And if you have made it this far reading, I want you to take away three things:

1. Know the symptoms of ovarian cancer

  • Bloating
  • Pelvic or abdominal pain
  • Trouble eating or feeling full quickly
  • Feeling the need to urinate urgently or often
    Other symptoms of ovarian cancer can include:
  • Fatigue
  • Upset stomach or heartburn
  • Back pain
  • Pain during sex
  • Constipation or menstrual change

2. Listen to your body – if symptoms are new and persist for more than two weeks, it is recommended that a woman see her doctor, and a gynecologic oncologist before surgery
if cancer is suspected.

3. Ask questions – ask questions in your family and with your physicians. You are your best advocate.

For more information about Shannon Routh and Teal Diva visit https://www.tealdiva.org

Shannon Routh

Teal Diva

Founder | President

ovarian {k}ancer survivor