The Silent Killer
Ovarian cancer is called "the silent killer" because it usually goes undetected until its advanced stages. It is the fifth leading cause of cancer deaths among American women, according to the Ovarian Cancer National Alliance (OCNA), and strikes one in 55 women in this country. Christie Buckner, 32, is among them.
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Silent killer? Not in my case. My cancer spoke up loud and clear, and so did I, but my doctor didn't listen.
It was the summer of 2000. I had just turned 30 and had just started working for the Ritz-Carlton as a market research analyst. One night I had a sharp pelvic pain while passing a small gas bubble. I'm not a hypochondriac or an alarmist, but this was such an odd thing that I went to my gynecologist, who ordered ultrasounds. One ovarian cyst was found.
Then I began to have pelvic pains, so I made another appointment. In July I had more ultrasounds. This was my idea, so my gynecologist could compare the two sets.
I was told the cyst had gotten slightly smaller. Well, the cyst hadn't gotten smaller -- it was another cyst on the other ovary, and the first one was gone! Apparently no one noticed. I didn't see the report. I was told I didn't have cancer, but no one ran a CA-125 (cancer antigen 125, a tumor marker). In January, I called back because the symptoms never went away; they got worse. I couldn't get access to my doctor by phone. When I demanded an appointment, the soonest they would give me was six weeks later.
I insisted on getting a third set of films, which were read by what I consider a grossly negligent radiologist. His report said it was possible I had pelvic inflammatory disease or endometriosis (which occurs when the uterine lining grows outside the uterus). The ultrasounds indicated I had fluid in my abdomen -- a red flag for ovarian cancer. He noted this in the report, but neither he nor my gynecologist put two and two together.
At the appointment I asked my doctor, "Do you want to know what my symptoms are?" I said they were mostly digestive and went on to explain them -- and the doctor said dismissively, "Well, have you seen someone for the digestive problem?"
I had done research and I knew I had textbook ovarian cancer symptoms. I knew that gynecologic problems can cause gastrointestinal symptoms -- and I've never been to medical school.
My doctor said I might have endometriosis. She suggested hormone therapy or a laparoscopy (when a physician inserts a telescope-like instrument into the abdomen to see the reproductive organs). I said, "What would you do?" She said she thought a laparoscopy was invasive, so she wouldn't do that.
I left there and returned to work, where a friend gave me her gynecologist's number. I got an appointment for two days later.
At my appointment the physician's assistant opened my file -- which I had demanded from the other doctor -- and said, "You need surgery." She left the room, I later found out, to go get the doctor -- and tell her, "I've got somebody here I think has cancer."
My new doctor said I needed surgery right away to determine if I had cancer or endometriosis. If the endometriosis was very bad, a hysterectomy might be required. If it was cancer, a hysterectomy and possibly a colostomy might be called for.
The doctor didn't trust my radiology reports. So before the surgery I went for more radiology work although we had 10-day-old ultrasounds. The second radiologist did a trans-pelvic and a trans-abdominal, and all the signs were there. He looked at the films from 10 days earlier and saw the same signs -- things that would lead a physician to suspect ovarian cancer.
I was praying it was endometriosis. I had surgery April 4th. In addition to performing a complete hysterectomy and appendectomy, the surgeon had to remove both ovaries, the layer of tissue called the omentum, a large, flat tumor and many small nodules of Ovarian Serous Carcinoma. I had Stage III-C ovarian cancer.
I woke up in terrible pain. I had asked my mom to tell me the results as soon as I woke up. She said it was cancer. I said, "Cancer."
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Ovarian cancer presents a specific danger to women for several reasons. For one, there is no early screening test for ovarian cancer; Pap smears don't detect it. So women with ovarian cancer usually don't see a doctor until they have symptoms, and by then the cancer is usually advanced. Also, symptoms of ovarian cancer are vague and often mimic gastrological or digestive problems. Many women don't think to go to a gynecologist for such symptoms. In some cases, as in Buckner's, a gynecologist will recommend consulting another specialist.
Ovarian cancer is defined in four "stages," with the first three divided into subgroups A, B and C, depending on the cancer's progress.
In Stage I, the cancer is limited to one or both ovaries. In Stage II, it has spread (metastasized) to other reproductive organs. When caught in these stages, women have about a 90 to 95 percent five-year survival rate, according to OCNA.
In Stage III, the cancer has spread to the abdominal lining or lymph nodes. Stage IV cancer has metastasized to the lungs, liver or sites outside the abdomen. When diagnosed in these stages, the chance of five-year survival is only about 25 percent.
In the United States, 75 percent of ovarian cancer cases are detected in Stages III and IV.
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I was scared for my life, so losing reproductive organs wasn't the biggest issue. I've always believed in adoption and had planned to adopt regardless of whether I had children biologically. The hysterectomy was still a very big deal, on the vanity level alone. I'd always had a flat, perfect tummy. Now I've got this big scar that loops around my belly button and makes my abdomen lumpy.
But I was willing to give in to all that, and I knew that I'd have to have chemotherapy and lose my long hair. As important as all those things had been to me at one time, I immediately had an appropriate sense of perspective. My horror was full-blown at the prospect of losing my life.
Three weeks after surgery I rushed into chemo. I began the standard regimen of carboplatin and Taxol. At my first treatment, I cried at how many people came into the infusion room for chemotherapy. It's a terrible club to belong to, but there are some really great people in it. The hard part is that when you make friends in the chemo office, they die on you sometimes.
I lost my hair 10 days after that treatment. I had waist-length, curly, blonde hair and it started falling out rapidly. It hurt to touch my scalp. Every hair you'd touch would fall out, and these hairs were very long.
My mother cut it short for me. Both of us cried through the whole thing. She helped me tie a bandanna on my head and we walked outside my apartment. It was a very hard thing to do -- to step outdoors with that bandanna on my head. I was very proud of myself.
The treatments produced the usual side effects. I had some nausea, boneaches, bad acne. I had anemia, and the low white blood cells made infection a constant danger. People on chemotherapy can't even eat raw produce because the microbes found in anything uncooked can be fatal. The common cold can kill you.
After six treatments we switched from Taxol to Taxotere because I had signs of neuropathy -- nerve damage that causes numbness and tingling in fingers and toes.
I had one numb toe for a long time, but it's better. Neuropathy is irreversible and can become so severe you can't walk. That may come, and I know people who can only wear tennis shoes -- forever. On the Taxotere, my fingernails and my toenails came close to falling off.
The standard therapy was six treatments, and my gynecological oncologist thought nine was appropriate. I wanted to continue treatment after that. I did not like my odds; Stage III-C ovarian cancer patients have a 40 percent chance of five-year survival. I wanted to kill every bit of it as long as I could stand treatment.
My mother was with me every minute through three treatments. Then she had a seizure.
The CAT scan and MRI showed a brain mass. A biopsy was done and it was a glioblastoma (a fast-acting, aggressive primary brain tumor) -- the worst possible thing. Six to 12 months was the prognosis.
My mother died on April 10, 2002.
People were asked, in lieu of flowers, to donate to the Ovarian Cancer Research Fund. My dad and I knew she would want all resources to go toward fighting my battle.
My mom and I were so close; she was my best friend. Her ability to communicate began to diminish not far into her illness. When she died, nothing needed to be said. I have that peace.
I see it all the time -- trivial things that people allow themselves to be made miserable over. One person told me when her newspaper is stolen each morning it ruins her day. I felt like saying, "You want to trade?"
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At my own insistence I endeavored to finish a year of chemotherapy. Before my last treatment, my platelets were too low and I couldn't get the chemo.
So I stopped treatment for two months and I was frightened the cancer would return. But at the same time, death didn't hold the same fear for me, since my mother had preceded me.
My next round of tests showed the cancer was back.
I sought advice from six physicians, none of whom agreed on what to do. These were all good physicians; it's just that with ovarian cancer, we're in the Dark Ages. I decided to attack it with surgery and chemo.
Journal entry: July 21, 2001
The prospect of this surgery is so frightening. We know it may not help at all but wind up so I've got a colostomy and/or urinary diversion device. And, I'm told, I've got -- well, here's how one doctor put it:
100 women are in your shoes with recurrent ovarian cancer.
50 do nothing.
50 are very aggressive -- surgery/chemo.
48 of the second 50 have exactly the same outcome as the first 50. Only two respond exceptionally well.
You have to hope to be one of the two.
I had a second surgery in July. Three weeks later, I embarked on the next round of treatments. I was given gemcitabine and a choice between carboplatin and cisplatin. I chose the stronger one, cisplatin.
It was pure hell. I had diarrhea, then for 30 hours straight I vomited every five to 10 minutes, long after there was nothing left to vomit. I prayed for death. When that receded, the antinausea medicines I took had blocked my digestive system, so I suffered terrible cramps.
I wasn't sure I could endure another treatment, but my CA-125 reflected a slight drop, so I did it again. I girded myself more heavily with antinausea medicines, and wasn't as sick. I experienced the same horrible cramping, though.
Then my CA-125 dropped dramatically. I went for a third round. This time I took some medications to ward off the gastrointestinal cramping. They worked, and it's been smooth sailing since then. The days following the infusion are certainly not fun, but I am not experiencing torment.
Right now it looks like I may be one of those two lucky ones. We'll see.
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A range of symptoms involving various body functions can signal ovarian cancer. They are often so vague that some women ignore them for weeks or months. Such symptoms, according to the National Ovarian Cancer Coalition, include: unexplained change in bowel and/or bladder habits such as constipation, urinary frequency, and/or incontinence; gastrointestinal upset such as gas, indigestion, and/or nausea; unexplained weight loss or weight gain; pelvic and/or abdominal pain or discomfort; pelvic and/or abdominal bloating or swelling; a constant feeling of fullness; ongoing fatigue; abnormal or postmenopausal bleeding; and pain during intercourse.
Ovarian cancer experts recommend that women with any of these symptoms see a gynecologist within two to three weeks of their onset and order a full workup: a CA-125 blood test, trans-pelvic and trans-abdominal ultrasounds and a pelvic/rectal exam. If any of these tests indicate abnormalities, a visit to a gynecological oncologist is recommended to ask for advanced-imaging tests such as CAT scans, MRIs or PET scans. "Women need to know they are their own best advocate and not to be dismissed by their doctors," says NOCC's Cathy Hylinski.
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I had attended church sporadically in recent years. Before my first surgery, I had a very rapid return to the church. When I couldn't have been more stressed and terrified, prayer was my only solace.
I have not been mad at God at any time. I asked God to spare my mother, and that didn't happen. I asked God to make me not have cancer, and that didn't happen. But these things are happening for a reason. My purpose here may be to strike a blow to this disease.
After my first surgery I asked my doctor, "Am I going to die?" -- expecting her to say something comforting. She couldn't answer. For a couple of weeks I was angry at my physicians who wouldn't tell me I was going to beat this.
I find it is a very common mindset -- now, people are angry at me. When they say to me, "It's going to be OK, right?" I can't tell them it's going to be OK. From the beginning, the odds have been overwhelmingly that I will die. The odds are that I will be dead before five years are up. I'm doing everything I can to beat this, but the Pollyanna answer would be untruthful. And no one wants to accept the bad news or the uncertain prognosis.
I would love to survive this disease. Whether I do for six months or to a ripe old age, I'll be grateful for whatever I get. This life is a gift from God. But there are worse things than dying, and death is not the end. Everything has the potential to remind me of my mortality -- whether it's organizing my filing cabinets and wondering if I'm wasting my time or buying a bottle of shampoo and wondering if I will be able to use it all up. I've made all kinds of arrangements. I've made notes about what hymns and what Bible verses I like. I volunteered on the Relay for Life committee -- I gave them the names of people I thought would be helpful next year, in case I'm not here.
One of my biggest concerns was who would get custody of my pets. My dad is going to care for them. I've thought about who could get use or enjoyment out of my possessions and have written down who should receive them.
Actually, one of the disturbing things I've thought about is who would treasure the things that my mom and I treasured -- some little tchotchke that had some crazy funny story attached to it, and no one will ever know. They'd just go to Goodwill.
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Another problem with ovarian cancer is that doctors -- including gynecologists -- are often unaware of its symptoms.
Buckner is not the first woman whose doctors didn't catch her ovarian cancer in its initial stages. "That happens quite a bit," says Denise Saladino of LaPlace, president of the Louisiana division of the National Ovarian Cancer Coalition (NOCC). "Women often tend to get brushed off or dismissed. That seems to be a recurring story when I talk to women about when they were first diagnosed."
In 2000, gynecologic oncologist Dr. Barbara Goff, of the University of Washington School of Medicine, published a survey of 1,725 ovarian cancer patients. About a third of them had seen three or more health care providers before they were diagnosed. The most common misdiagnoses were stress, depression, gastritis and irritable bowel syndrome. Ninety-five percent reported symptoms prior to their diagnosis, but many were not tested for ovarian cancer during their first doctor's visit. Twenty-six percent were not diagnosed with ovarian cancer until more than six months after they first saw a physician complaining of symptoms. Eleven percent were diagnosed more than one year later.
Many women, like Buckner, are thought to be "too young" to have ovarian cancer, since the highest instances occur in post-menopausal women. Goff's survey showed younger women took longer to be diagnosed.
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Ovarian cancer is, today, where breast cancer was 40 years ago.
It's wonderful that all this awareness of breast cancer has evolved over the years. That's a horrible disease, too, and it strikes one in nine women. But many forms of breast cancer are curable; many women are able to triumph over breast cancer. My mother did. But ovarian -- the odds are not so good. There needs to be more fundraising, more awareness of ovarian cancer.
We have practically a walk a weekend for breast cancer, and ovarian -- we're dying left and right. You see pink ribbons everywhere. I just found out the ribbon color for ovarian is teal. I didn't find out until Sept. 15 that September was Ovarian Cancer Awareness Month.
The best-case scenario is -- and this is very far-fetched -- that I keep myself alive for long enough and something dramatic occurs in terms of cure. However, there is nothing promising on the horizon. Nothing.
I have not given up hope. Cisplatin, the chemical I'm on, was discovered by accident. So all the money going to breast cancer research -- there can be sometimes a connection between breast and ovarian cancer, and maybe those people will stumble on a cure for my disease.
There's no way to ever know you are cancer-free. With ovarian cancer, the only way anyone can say whether you definitely have the cancer or not is to say "Yes, you do" while holding a chunk of it on a scalpel. That is the only way.
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A family history of breast, ovarian or colon cancer puts women at heightened risk for ovarian cancer. A genetic mutation linked to breast and ovarian cancer is found on the BRCA1 and BRCA2 genes; women can undergo genetic testing to determine whether they have this mutation. Other risk factors include use of fertility drugs, uninterrupted fertility, increasing age (especially over 50) and being of Eastern European Jewish descent.
Removal of the ovaries greatly decreases the risk of ovarian cancer, though peritoneal cancer (of the tissue surrounding the ovaries) can occur without the ovaries present.
Women at risk could, along with an annual pelvic/rectal exam, elect to have a trans-vaginal ultrasound every six months or every year, or to alternate an ultrasound with a CA-125 blood test every six months. This type of screening is questionable at best, NOCA says, because the tests are expensive and not necessarily effective. The unfortunate truth is that there is simply no reliable early-detection method for ovarian cancer.
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Journal entry: April 2, '02
I noticed something under my toenails, and I found they were oozing. Maybe I'm going to lose them. "What next?" I keep asking.
As I told the dentist today, when she tried (unsuccessfully) to get me on a prescription rinse that would stain my teeth brown, I can't take anymore assaults on my looks:
- no hair
- no eyelashes
- no eyebrows
- 15 lbs. heavier
- fingernails falling off
- skin not quite normal (no color) and acne sometimes
- figure permanently altered
- disfiguring scars, fleshy appearance of abdomen
- neuropathy -- and now, toenails --making heels/sandals questionable.
And, on top of all that, they expect me to walk around with:
10) brown teeth -- That's just not going to happen!
And how about wigs? They're expensive and they look like crap. You have three choices: Grandma, Country-Western Singer, or Streetwalker. Mine are from the Streetwalker collection.
When you lose your eyelashes, you look very weird. With false eyelashes I look like a sad clown. I could look like a freak or a sad clown. Take my pick.
Look what this has taken away from me. I had energy. I was athletic. I was sexy. I was fun. All those things that you take for granted, you lose so many of those -- from your eyelashes to your ability to wear nail polish. It's important to bring these things up. That's huge. It's part of who you are.
I was lucky in that I had a loving relationship with my partner, who was not bothered by physical changes. He made me feel as beautiful as before.
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It drives me crazy when people say, "A positive attitude is the most important thing!" Treatment is what elicits a biological response to cancer, not attitude. My mother didn't die because she had a bad attitude; she died because she had a fatal disease. If your attitude makes you stick it out through another round of chemotherapy, or other behaviors that are conducive to success -- great. A good attitude helps your quality of life. But if you ask me if I want to do a cheer or to get an infusion of cisplatin, give me cisplatin.
People with cancer should not fall prey to guilt that their lifestyle caused it, or if they have a less-than-positive attitude their tumor will grow faster. People sometimes threaten you with your own disease if you're not thinking the way they're most comfortable for you to be thinking.
There are so many misconceptions about cancer -- people who think we get to drink tea and listen to soothing music all day. In addition to the endless doctors' appointments, lab work and treatments, we still have to call Entergy and fight when our bill is messed up; we still have to care for sick relatives or children, go vote, everything. You still have to take the trash out. Nothing stops.
Everybody wants to tell me I can cure myself with nutrition or supplements. I don't want to hear it. I have investigated everything. If there were a nutritional cure for cancer, my chemotherapy office would not be packed.
I cringe every time anyone calls me a "survivor." I'm doing everything I can to survive; I'm praying, I am doing everything from the attitude on down, but it is presumptuous to say I will survive this. When we thought I was in remission for two months, my biggest fear was, what if it comes back? Now I have much less anxiety because there is no suspense anymore. I'm doing well, though I have no idea how long this will last, and I've learned to live in the present.
I had always planned to adopt a child, and now I'm aware that it may not happen. But I'm still reaching for the same goals. Right now I've got things to deal with, so I can't go back to school, and I can't adopt until it looks like I'm having a lasting remission.
But do you know what I did today? At my church rummage sale I found The Sesame Street Treasury. It's 15 children's books, and I bought it for a dollar a book.
So I still plan.
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"Women feel that when they go into the gynecologist's office that all gynecological cancers are going to be looked for," says NOCC's Cathy Hylinski. "That's not the case."
Annual tests for ovarian cancer may one day become available. Earlier this month, a Maryland biotechnology company, Correlogic Systems Inc., announced that in April it plans to begin clinical trials on a protein-pattern blood test designed to detect ovarian cancer in its earliest stages. Should the trials show success, the tests would have to be approved by the federal Food and Drug Administration.
"How far away [these tests are] depends on who you talk to," says Saladino, of NOCC-Louisiana. "I've heard from two to five years."
There are a few measures that women can take to try and prevent ovarian cancer. Use of oral contraceptives can decrease a woman's risk; so can breastfeeding, pregnancy and tubal ligation. Research has also shown a possible connection to ovarian cancer from using talcum powder in the genital area, frequent douching, and eating a high-fat diet.
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Gynecologists need to screen for ovarian cancer. When they are careless with women's lives, this is what happens. A 32-year-old woman with all the potential in the world, terminally ill. If this had been caught in Stage I it might be a different story, and I'm convinced I had symptoms at Stage I.
It's important for women to go to the doctor if they have symptoms. But that's not enough. You have to harass your doctor into taking you seriously and screening for ovarian cancer. It strikes 1 in 55, tell them, not 1 in 55,000. I've learned you cannot trust your doctor, even one with an excellent reputation, as mine had.
As intelligent and educated about my health as I was, it's too late. I'm terminally ill. If I can fall through the cracks, anybody can.
Some positive things have come out of this. One of the biggest has been discovering how much good there is in people. People who went from having a small role in my life to being energetic, eager caretakers. The friends of my mother who assumed a maternal role.
I'm extremely fortunate to have been supported by the Ritz-Carlton and especially my wonderful co-workers. I went on medical leave, but I've returned and I'm able to work from home. I'm not a market research analyst anymore, but there are things I can contribute, and the Ritz-Carlton has given me an opportunity to do so.
I've also received tremendous support from my apartment's management company and from my neighbors. My church has been so great. I don't know how people who don't have such an amazing support network get through it.
I received a lot of financial assistance. I had savings earmarked for other things, and I went through that. I received a great deal of help, and none of it from millionaires: from hard-working, good people -- my friends and family and boyfriend.
My best friends from high school flew to see me. One cleaned my apartment and did a lot of accounting work for me. One friend cared for me after chemo, trying to come up with things I could eat. Another mailed me her journal, full of wonderful, inspirational things she had compiled.
I am so lucky.
For more information or to donate to ovarian cancer research, call the National Ovarian Cancer Coalition in Boca Raton, Fla., at 1-888-OVARIAN (682-7426); the Ovarian Cancer National Alliance in Washington, D.C. at (202) 331-1332; or the National Ovarian Cancer Research Fund in New York, NY at (800) 873-9569.
Christie Buckner can be reached at firstname.lastname@example.org. She is available to speak at physicians' meetings, cancer-related groups, women's groups or for any interested organization. Eileen Loh Harrist is a staff writer for Gambit Weekly in New Orleans. She has won regional and national awards for investigative reporting and feature writing. Ms. Harrist is also a freelance writer and former reporter for the Memphis Flyer and The Associated Press.