Friday, August 20, 2010

September Is Ovarian Cancer Awareness Month

Several posts back, I did one about cervical cancer and it's link with the STD HPV.  Well, there's another cancer women can get that can be easily missed by your gynecologist. That's because there's no real test for it and having a "good" female exam doesn't catch it.  Getting a colonoscopy done doesn't catch it.  Having your gyno catch/find uterine or ovarian polyps and saying "We'll just watch them to see what happens" also doesn't "catch" this cancer.  It's ovarian cancer and it's even more of a killer in women than other types of cancer precisely because there's no specific test for it.  You have to be on top of your game, and pay attention to your body and what it's telling you, to even know that "something's not right" and force... yes, force your doctor or gyno to take steps to check. This is not a cancer to mess with or take lightly or even think that, because you're young, you won't get it.  Cancer is  no respector of age.
My cousin is a survivor of two types of cancer; leukemia and a type of cancer that caused doctors to have to remove her tongue and replace it with tissue and skin grafts from her arm. They told her she would never be able to speak clearly again, it would just be a lump of flesh in her mouth. Today, the only thing she can't do with the "lump of flesh in her mouth" is stick her tongue out at you. She speaks quite clearly, thank you very much! She's only about nine or ten years older than me.
A friend of mine got tested for a specific gene, called the BRCA2 (or Breast Cancer 2) gene, and found she has it. This gene will guarantee you're going to get breast cancer and, I've learned, most likely ovarian cancer.  Because of this, and several other events that occured, she opted to have a double mastectomy and hystorectomy followed by reconstructive surgery.  She's right around my age. 
Yeah, but I'm way younger than you. I won't get cancer!
I know of a young man in a sister church down in San Diego who is only in his teens.  He got cancer and had to go through chemotherapy. Praise God, he's in remission.  But, remission doesn't mean he's cured. It means, for now, he's beaten cancer. But he's got to have regular check ups to ensure, if it does return, they catch it in time to treat him again.  He doesn't know if or when it will happen.  He just prays and relies on God.
I recently met another woman who has been through ovarian cancer. Her name is Diana Jewell and she's a pretty amazing woman in quite a number of respects.  She has... well, let's call it "started a movement" to get women to understand and love their gray hair. You can learn all about her and her "movement" here.  But she wrote an article about her ovarian cancer and has agreed to let me share it with you.  So, from her own lips (or fingers... whichever), here is Diana's story.

It’s time to remind you again. Last year’s article (which stayed up the whole year) did "get through" to some. But not as many as I had hoped. Time to try a different tactic. One that is personal.

But, first, why be aware at all? Well, for one thing, if you are aware of the symptoms of this deadly disease, you stand a better chance of early diagnosis. If you are aware, you can convince a friend, mother or sister that maybe the persistent bloating she feels isn’t "normal." If you are aware, you can help spread the word. Ovarian cancer doesn’t strike many women in the grand scheme of things. Only about 22,000 women in the US and 60,000 in Europe each year. What are your chances, really?

Had I been aware of Ovarian cancer, I would not have thought mine were very high. I didn’t know the symptoms, never gave a thought to the disease at all. I remember going to a luncheon once where Liz Tilberis, the former editor-in-chief of Harper’s Bazaar, was speaking. She was fighting the disease at the time. I remember listening sympathetically, but feeling very relieved that I had just had a "good" gynecologic exam. Liz later lost her battle with the disease.

Flash forward a few years. My book, Going Gray, Looking Great! had just hit the bookstores. I was preparing for my first personal appearance. It promised to be an exciting summer ahead. A few months earlier, I again had a "good" gynecologic check-up. Then, out of nowhere, I was diagnosed with uterine cancer. It was "as stage 1 as you could get," I was told, and a radical hysterectomy would fix me up just fine. I had it done, and 10 days later was on my feet in front of an audience, describing the glories of going gray. The appearance proved popular, and they asked me to come back. I knew I couldn’t. The day before, I was informed that the lab results came back showing I had another primary cancer: ovarian. My first thought was that my ovaries had already been removed, no big deal, right? Wrong. Cells can remain.

I suppose the days following any cancer diagnosis are a blur for everybody. I remember overhearing one friend ask another, "Does she know how serious this is?" The second friend made a "Shhhhh" gesture and shook her head "no." That made me determined to find out. I spent the weekend cruising the internet. My husband and I will always refer to that as "the weekend from hell." Suddenly, I knew too much.

The doctors told me this was a fortuitous discovery. Because Ovarian cancer has a habit of hiding until it is too late. I didn’t feel very fortuitous. I didn’t feel very fortuitous when they said I would need more surgery (a "staging" operation) and then chemo. I didn’t feel very fortuitous when I walked into the chemo suite for the first time, and a woman looked at me and said "You look like you’ve been invited to a party you don’t want to attend." She was right. I kept thinking, I can’t be here, this can’t be happening. There was no family history. No long lost relative who ever had this. I felt fine. Why did I have it? There was only one answer: Because I did.

I was terrified of chemo. I had to get psychological counseling to even take it. I asked my doctor how long I would have if I didn’t have it. He replied, "Not long at all because I will personally kill you. I can do nothing for 80% of the women who get this disease. You, at least, have a chance."

And those are the facts. Most women are diagnosed at stage 3 when prognosis is poor. Yes, there are survivors among this group, but they are the exceptions. And as remissions turn into recurrences, they are in treatment again and again. This is an aggressive and persistent cancer, already moving on to the next stage at the time of diagnosis.

I made wonderful friends during my time in treatment. Vibrant, active, fun women. We laughed, we giggled, we ate M&Ms together. We talked about fashion and beauty, about great shoes and good handbags. They wanted to know more about going gray (after their hair came back), about hairstyles and cosmetics. My summer of "personal appearances" had turned into tutorials in the chemo suite. We had fun, in spite of the needles planted firmly in our veins delivering the highest toxic chemicals known to man, and we never talked about being sick at all. Sadly, not one of these beautiful, vital women is alive today.

I am sharing this story now because I want you to listen. To think about the symptoms below, really think about them, and if you have any nagging doubts whatsoever, get to a doctor. Life changes when you are diagnosed. To this day, I am tested every 4 months, more frequently if there is any question. It is always stressful. There is always the possibility I will go out of remission. And that’s the only word they use with this disease. They never say "cured." Sometimes I laugh to myself at the inventive phrases my oncologist uses: "virtually cured," "for all intents and purposes." It doesn’t really make me breathe easier, but given the alternative, I’ll take it! And be eternally grateful for the fortuitous discovery.

But should it have to be fortuitous? No. You have the power. You have the instincts. You can prevent a late-stage diagnosis from happening to you.

Ovarian cancer has been called "the silent killer" because there are no symptoms. But there are. A woman knows her own body, knows when things aren’t right. Symptoms can be vague, things we all experience from time to time. We ignore them. Doctors ignore them. But if they persist over a two-week period, the smartest thing you’ll ever do is to have them checked out.
  • Pressure or pain in your abdomen or pelvis
  • Swelling, bloating, gastrointestinal upset
  • Frequent urination in the absence of an infection
  • Persistent indigestion, gas or nausea
  • Loss of appetite
  • Unexplained weight loss or gain
  • Difficulty eating or feeling full quickly
  • Increased abdominal girth or clothes fitting tighter around your waist
  • A persistent lack of energy  
  • Lower back pain

If you have even one of these symptoms (that’s all I had), and it becomes persistent, see your gynecologist for an internal exam and request a transvaginal ultrasound, a very simple test that can be done in-office. Ask for a blood test called a ca-125 that measures the level of an antigen, a protein molecule, that may be produced in excess when ovarian cancer cells are present. This is not a foolproof test, but if your ca-125 is well outside the normal range of 0-35, it's a very good indicator. A pap test will tell you nothing; it is for cervical cancer only. There currently are no reliable screening tests for Ovarian cancer.