New Year's Surprise
I had no symptoms and no suspicions of anything being wrong when I went in for my regular exam at the gynecologist's in January 2000. Like everyone else, I was excited about the new year and the new millennium. Literally the last thing on my mind was cancer.
Everything was fine with the examination until my gynecologist began to palpate my uterus, which was very painful. As a precaution, he asked that I have an ultrasound (a transvaginal ultrasound is a diagnostic test uses a small ultrasound probe to scan the ovaries with sound waves). They had predicted snow that day and I had come into Manhattan from our home in Short Hills, New Jersey, so I asked him if I could schedule it for another day. He said, no, he'd prefer that I do it that same day. I remember noticing his sense of urgency, but I still didn't think it was anything serious.
I knew something was amiss when, after the ultrasound, the radiologist himself, not the technician, came out with a large envelope. "Mrs. Genet," he said, handing me the envelope, "these are your scans. Your doctor would like to see you in his office right away." And when I got back to my doctor's office, they wouldn't even let me hang up my coat. They told me that the doctor was waiting.
We Have a Little Situation
"We have a little situation," my gynecologist told me. He placed my scans up on the lightbox in his office and showed me where I very clearly had two bilateral ovarian growths. After going over my family's history with cancer, of which my family has none, he ordered a CA-125 blood test. (The CA-125 blood test measures the level of the CA-125 protein, which is released by most ovarian cancer cells as well as many other benign conditions.) He told me that he didn't have an awful lot of confidence in the test, but that it's the best test available. (Currently, there is no definitive diagnostic test for screening ovarian cancer.)
On my way home from the city, I called my husband, Leon, and told him that I didn't exactly have a run-of-the-mill exam. I also phoned my son, Jonathan, saying that my office visit hadn't gone as planned. I remember my husband telling me not to worry, that he was sure it was nothing. It's funny, in these situations everyone's sure it's nothing. I certainly hoped that they were right. Still, when I phoned my daughter Pamela, I broke down crying. I felt fear in the back of my mind, but I decided not to give into the fear. Not yet.
Negative Results: False Sense of Relief
I was hugely relieved when the results from the CA-125 test came back negative. I remember thinking, "This is great. All I'll need is a hysterectomy." My gynecologist scheduled the procedure, which he would perform, but noted that he would have a gynecologic oncologist on hand, just in case they found something they weren't expecting. And when I went into the hospital for the hysterectomy, two weeks later, I was very optimistic. At 56, I felt fine, without a single symptom. I told myself that women have hysterectomies all the time and they're out of the hospital three days later.
After the procedure, when I was recovering from the anesthetic, I repeatedly asked Pamela, "Am I OK?" As it turned out, I wasn't.
It's Malignant, but It Can Be Treated
My gynecologist came in and broke the bad news to me: I had ovarian cancer. And not only that, it was an advanced form of it, diagnosed as Stage IIIc. (Stage IIIc denotes ovarian cancer that has spread to abdominal organs.)
It was too surreal. I thought that I had to be hallucinating from the anesthetic. He then told me, "It's malignant, but it can be treated." I saw the look in Pamela's eyes and my very first reaction was to break down and say, "I'm so sorry that I gave you this legacy!" That was the only thing to go through my mind. When you have ovarian cancer, you think of your daughter and her ovaries and you fear that you might have passed it on. My first husband died of ALL (acute lymphocytic leukemia) and all I could think was that my children now had two parents who had cancer. (Fortunately, Pamela, who was recently tested, is healthy and cancer-free.)
After being discharged from the hospital, I was suddenly hit with feelings of great despair, fear, and loneliness. Loneliness because, no matter how much your family and friends support you, you have to battle this thing by yourself. I wondered if I was equipped physically and emotionally for the battle. And to tell you the truth, I was completely unprepared. Going into the hysterectomy, I never said, "What if it is cancer?"
The Battle Begins
Once I got home, I quickly realized that I was in a battle. Together with my family and friends, we almost immediately started to see what we could do to fight it. Most importantly, we had to choose where I was going to receive my treatment. My family and friends did a tremendous amount of research, both on the phone and on the Web. We went to many hospitals in the area and talked to a number of doctors, but then friends started asking me, "What are you doing? You need to be at a cancer center where they're doing the latest clinical trials and research. Memorial Sloan-Kettering is right here. They're the doctors who see the most cancer. It's really all they do." My husband, my best friend, my daughter, and my son got together and formed the core of what we call "Team Eileen" -- a name coined by my son, Jonathan. And what Team Eileen decided was that I should go to Memorial Sloan-Kettering.
Why MSKCC?
Going to 53rd Street (Rockefeller Outpatient Pavilion, Memorial Sloan-Kettering 53rd Street), seeing the waterfall in the lobby, all the pleasant attendants -- it didn't seem as if I was walking into a hospital. It was as if I was walking into a welcoming environment. And as soon as I met Dr. Paul Sabbatini (a medical oncologist at MSKCC with expertise in gynecologic oncology) and Dr. Richard Barakat (a gynecologic surgeon at MSKCC, specializing in women with ovarian, endometrial, cervical, vulvar, and vaginal cancers), I knew that it was where I was going to receive my treatment. They're both so compassionate and caring, which, in addition to their obvious brilliance and expertise in the field, makes them the perfect doctors in just about every respect. They both answered every single question we had, patiently and soothingly. It made me feel so good to know that I had them both on my side. They are my dream team.
Like a Rock
Dr. Sabbatini started me on chemotherapy in late February. And, as it is for many people on chemotherapy, I experienced a whole host of symptoms, from fatigue to joint pain, nausea to hair loss -- though I have to say that the hair loss was the hardest to deal with. Even though you know it's going to happen, it was still very traumatic when it started to fall out. It was upsetting to wake up one morning and see no eyebrows, no eyelashes. I felt as if my head resembled a rock. But you tell yourself, "OK, it's going to grow back." And sure enough, it did.
After about five months of chemotherapy, Dr. Barakat performed a surgical procedure to look for signs of the cancer having spread to other organs. During the procedure, he examined every major organ and took about 30 tissue samples. At the same time, an intraperitoneal (IP) port was implanted into my abdominal wall, facilitating later chemotherapy treatments.
The pathology report came back clean. There was no suspicion of disease. Still, just to be careful, I received three more chemotherapy treatments. During these, they injected the chemotherapy drugs directly into the IP port in my abdomen, then rotated my body, allowing the drugs to bathe all of my abdominal organs.
After that, in November 2000, all my tests showed that I was in remission. And eight months later, my husband and I decided to take an extended trip to Italy to celebrate his birthday and my health.
Regular Check-Up/Questionable Findings
I had my regular check-up two days after we returned from the trip. The doctors ordered a CT (computerized tomography) scan after seeing something "questionable" in my liver. The CT scan was followed by an ultrasound, chest x-rays, and PET (positron emission tomography) scans. All of this imaging discovered that there was indeed something questionable in me -- the cancer had spread to my liver and lungs.
Again, I had felt fine, having experienced no symptoms whatsoever. But I was more frightened this time than I had been when I received my first diagnosis. To be honest, I was devastated. Since the tumors were inside my liver, not in an area that could easily be removed and then regenerated, surgical removal was not an option.
But then I went in to see Dr. Sabbatini. He told me that some research analyses called micro-array tests were being done on a variety of tumors that can occur in the ovaries. (Micro-array tests are genetic tests that help researchers compare molecular differences between different types of tumor cells, ultimately allowing doctors to tailor therapy.)
My tumor type was what is called a mucinous adenocarcinoma. Adenocarcinomas are cancers that begin in cells lining certain internal organs. Mucinous cancers can occur in other places such as the colon or appendix, but these sites were ruled out for me because we had repeated my endoscopy (a diagnostic procedure that screens the gastrointestinal tract) and it was all normal.
The results of these micro-array tests had suggested that mucinous cancers have a certain cellular receptor called COX-2, which is an enzyme that has been linked to inflammation and tumor formation and growth. As a result of the tests, Dr. Sabbatini put me on a combination experimental chemotherapy regimen that includes a drug called Xeloda, which is an oral form of 5- Fluorouracil (5-FU), and a drug called Celebrex, which is a COX-2 inhibitor. I've been on these drugs for 18 months and aside from some initial side effects, I feel good.
Advice from One Who Knows
So I have the bombs and the ground troops fighting my cancer. That's how I look at it. I believe it's very important to have the right attitude. The smile factor throughout is important. No matter how grim the survival statistics appear at first, don't lose hope. You are not a number. You are an individual with your very own survival chances. There is always hope.
In the beginning, when I first found out I had cancer, I felt like a deer in headlights, just standing there, stunned, not knowing what to do next. That's why it's so important to get as much help from those around you as possible. Someone to drive you to your treatments, someone who can stay with you during the treatments, and someone to take you home. This doesn't and shouldn't have to be the same person. You don't want to wear out your welcome with any one person.
Along these same lines, I think it's incredibly helpful to have one or, if possible, two people acting as a patient advocate for you during your treatment, accompanying you on each of your doctor's appointments. You're so overwhelmed by everything, especially in the beginning. You need someone who is less emotionally besieged to make the phone calls, do the Web searches, and take notes during the exams.
And most importantly, especially for a cancer as difficult to diagnose and treat as ovarian cancer, you need to go to a hospital or medical center that has experience treating this complex disease -- a place like Memorial Sloan-Kettering. Personally, knowing I have Dr. Sabbatini and Dr. Barakat on my side is like an adrenaline shot. It gives me tremendous confidence knowing I have them as my quarterbacks, calling all the plays.
Turning Personal Misfortune into Scientific Progress
Because of the care I received from Dr. Sabbatini and Dr. Barakat, along with others at Memorial Sloan-Kettering, I wanted to give something back. I suffered first-hand from the absence of a reliable screening test for ovarian cancer, so it became our goal -- Leon's and mine -- to raise money for research to develop such a test. If there was a purpose to my illness, we decided it was to make something good come from this situation.
Our goal is to help advance research efforts in the field, so that hopefully someday soon researchers will create a blood test that can screen for early ovarian cancer. Until then, it is our hope that Memorial Sloan-Kettering will find a cure, so that our daughters, granddaughters, and friends will be protected from this scourge.
(If you are interested in making a donation to The Eileen Genet Fund for Ovarian Cancer Prevention and Research, please contact Jane Weyl, Development Department, Memorial Sloan-Kettering Cancer Center, 633 3rd Avenue, 28th Floor, New York, NY 10017, 646-227-2058.)
