Every 35 minutes a woman loses her life to ovarian cancer. It is the deadliest of all gynecologic cancers. In fact ovarian cancer kills more women than all gynecologic cancers combined. What’s most upsetting about this is the fact that ovarian cancer has about a 90% cure rate when it is detected early! Yet less than 15% of women know the symptoms and over 80% have never had a conversation with their doctor about this disease. I was one of those women.
My story is typical of most women diagnosed with this disease. The only thing that is not typical is I am here to tell it. I am a survivor of late stage and recurring ovarian cancer. My surgeries were extreme, going far beyond the usual radical hysterectomy. To say that I’m alive against all odds is putting it mildly. I started this journey in January 2000, over ten years ago. Since that time, not much has changed. Year after year, I look at statistics that for the most part, remain stagnant.
Over 75% of women diagnosed with ovarian cancer are in the late stages of the disease, where survival rates are too depressing to even discuss. When I was diagnosed I was angry and wanted to know why no one had ever talked to me about this disease. It’s NOT rare! In the United States 1 in 55 women will be diagnosed with this disease and worldwide about 1 in 70. It’s time to break the silence.
Ovarian cancer is called ‘The Silent Killer’ because it isn’t usually detected until it has reached the advanced stages. There is no early detection test and women have long said they had no symptoms. Like most women, I thought a good result on my Pap test meant there’s no gynecologic cancer. However, that is not true. My Pap results were normal even though I had late stage ovarian cancer. The Pap smear only tests for cervical cancer, not ovarian. Also, it is not true that there are no symptoms. I thought I didn’t have any symptoms until I looked back and realized I did have several on the list. The problem is the symptoms were so vague I didn’t give them a second thought. The new mantra for ovarian cancer advocates is “It Whispers – So listen!”
Ovarian cancer symptoms tend to be non-specific and can mimic other conditions such as irritable bowel syndrome or even aging. Because of this, symptoms are often ignored.
- Increased abdominal size – Bloating or discomfort
- Changes in bladder function
- Constipation or diarrhea
- Feeling of fullness
- Shortness of breath
- Unusual vaginal bleeding or bleeding after menopause
- Pelvic pain
- Pain during intercourse
If any of these conditions persist for more than 2-3 weeks, consult a doctor. Keep in mind that even when women go to the doctor with these symptoms, they are often misdiagnosed. Although the vast majority of theses symptoms will not result in cancer, you owe it to yourself to get the proper screening. No one wants to think these seemingly minor issues are cancer, but when it comes to this disease, a speedy diagnosis is crucial and can save your life.
Screening involves three procedures.
- Pelvic exam – Including the recto-vaginal exam
- CA-125 blood test
- Transvaginal Ultrasound
Pelvic Exam: There are important reasons to have the rectal portion of the exam. The ovaries tend to be behind the uterus, so the doctor is able to feel smaller ovarian abnormalities through the rectum. In patients with ovarian cancer there can be bumpiness in front of the rectum called cul-de-sac nodularity. My gynecologic oncologist told me there has been countless times it was obvious to him the woman had ovarian cancer simply by doing a rectal exam. It isn’t just ovarian cancer that can be discovered, but also endometriosis can be felt between the rectum and vagina. Actually, the rectal component should be a regular part of the pelvic exam for women over age thirty-five.
CA-125: Keep in mind that the CA-125 blood test alone is not reliable enough to be used as an early detection for ovarian cancer. This blood test measures the amount of CA-125, a protein that’s increased in the blood of many women with ovarian cancer. Unfortunately, it only returns a true positive result for about 50% of women with Stage I ovarian cancer. Also, there are other non-cancerous diseases that can elevate CA-125 levels. Sometimes women have normal CA-125 levels yet still have ovarian cancer. This was the case with my friend Bonnie who had Stage IV (the most advanced stage). The normal range is anything less than 35. Even though the CA-125 blood test isn’t perfect, it is the best we have right now and most of the time it’s an effective test.
Transvaginal Ultrasound: Full screening for ovarian cancer includes a transvaginal ultrasound. This diagnostic test gives a magnified view of the cervix, uterus, ovaries, fallopian tubes and surrounding areas. The technologist inserts what looks like a wand into the vagina to take pictures of the pelvis. This enables the doctor to see any tumors, cysts, endometriosis and/or any other abnormalities. While the ultrasound can be helpful in finding a mass in the ovaries, it does not predict which masses are cancers and which are benign diseases of the ovaries.
While each of these three screening methods has advantages, none can stand alone. When all three are used together, early detection is not only possible but probable! When I was first diagnosed with advanced ovarian cancer in 2000, I was told they were working on an early detection test. It is now 2010 and still nothing. Yes, indeed many are working on this and I know we are getting closer each day.
Currently we’re hearing exciting news about the HE4 test which has recently been cleared by the FDA for monitoring recurrence or progressive disease in patients with epithelial ovarian cancer. Also in the news – we hear that Boston scientists have developed a blood test so sensitive it can detect a single cancer cell among billions of healthy cells in our body. While there’s lots of good news for cancer patients, early detection of ovarian cancer remains a challenge.
Early detection is the key and it will improve survival rates dramatically. Educating women about ovarian cancer is the first step to the cure. If we listen to the whispers and do the proper screening, we can save countless precious lives. Even if you have been diagnosed with late stage ovarian cancer (like me) or if you have any kind of cancer, don’t let statistics determine your fate!
I realize there is no known “cure” for cancer – no real breakthrough or headline news telling us a cure has been discovered. Still, thousands of people have won this battle. It is truly possible. I’m am not just alive and surviving; I am thriving and living my best life. You can too.
Chris Bledy ~Author of Beating Ovarian Cancer
You’ve got children and now you’ve got cancer. One of your first concerns is probably your kids. What do I tell them? Should I tell them? How is this going to affect their lives?
Each year thousands of parents are forced to deal with questions just like these. Although seems impossible to come up with exactly what to say and how much information to give – honesty is the only way to go when it comes to cancer.
I’ve met parents who believe they are protecting their children by not telling them. This is absolutely not true. Believe me… children always know when something is wrong. If you’re not honest, they imagine the worst. They can feel betrayed and loose trust in you (particularly if they hear it from someone else). When you exclude children from important family issues they feel isolated and unworthy. Keeping cancer a secret is extremely hurtful and damaging.
Kids who are told about a parent’s cancer do far better than those who are left to their imagination. Children can cope and in fact do quite well when allowed to ask questions and talk about their feelings.
Get all the kids together if possible. Be calm during your discussion. Have another adult there. The kids will know there are other people they can talk with for support.
You’ll probably have to repeat information, but just be patient. Be clear using words they understand. Words like medicine instead of chemo, doctor rather than oncologist are easier for kids to understand. Talk about your feelings so they feel safe expressing their feelings. Reassure them this is NOT anyone’s fault. Tell them how much you love them and they will always be cared for. Let them know cancer is not contagious.
Your cancer leaves a mark on all who care about you. It changes your life, but it changes theirs too. Talk about changes in routines, chores and other activities. Involve the children in deciding how they can help. This prepares them for the adjustments that lie ahead. If they ask questions you don’t know, tell them you don’t know. Kids understand.
Although, my children were grown when I was diagnosed with advanced ovarian cancer, I was still extremely concerned about how it would impact them. The role reversal was difficult on them. They were taking care of mom, the person who always took care of them. This was not a role any of us wanted, but we all learned a lot about family and unconditional love.
My little niece Roxanne was such a blessing when I was sick. She loved helping me. Sometimes she’d just sit on my lap giving me lots of hugs and kisses. Sometimes we played games with my wig. That got her giggling uncontrollably which was quite contagious to anyone around. Once she asked me why everyone else had eyelashes except me. I explained it was a side effect from my medicine, but my treatment was almost over and I’d soon have eyelashes again. She was intently looking at my eyes when suddenly she said, “Look Auntie Chris, its happening.” Excitedly she exclaimed, “You already have one eyelash!” We all got a good laugh out of that. Leave it to a child to find one lonely eyelash. But, you know what? After she left, I looked for that eyelash and sure enough there was one.
Whatever you do – don’t hide your cancer from your children and loved ones. Children are a healing presence and they love unconditionally. Don’t create the feeling that cancer is some nasty secret to be whispered about or referred to as the “C” word. It’s important to know the journey with cancer isn’t all sorrow and sadness. Many good things happened because of my illness. We learned an awful lot about cancer. We participated in cancer events raising money for the cause. We met and supported others. We no longer take each other for granted. Most importantly, we all learned how to live in this moment – the only moment that really counts. Now is the only time any of us have. It’s the time we live, we love and we heal.
Chris Bledy ~Author of Beating Ovarian Cancer
Want to learn more about your risk for ovarian cancer? I met Joseph Casey last week at the Ovarian Cancer National Alliance Conference. He lost his mother to ovarian cancer. As a result, his family created this wonderful short video. Please take a few minutes to watch it. It is informative and touching.