Survivor Stories
Stories of individuals, sharing information about their experiences so others may be more aware of early indicators or of what to expect along the way.
SURVIVOR STORY #1
Grace Katzenberger is an 11-year survivor of ovarian cancer. She was diagnosed in 1997 at age 60 with Stage III-C and has had no recurrences. She was one of seven founders of SLOCA and is its president. Here is her story:
About eight years after I went through menopause, I started having periods again. In October 1996, I went to see a gynecologist. The next month, he did a D&C.
For the next several months, the doctor had me take estrogen and progesterone to control my periods. The hormones didn’t work; I still had periods or episodes of spotting off and on. I didn’t even think about it being cancer, but I knew something was wrong.
I asked the doctor several times about doing a hysterectomy, but he put me off by saying he wanted to try the hormones first. In May 1997 I asked him again. He told me I would have to lose weight before he could do surgery. We scheduled the surgery for September, and I went on a diet and started losing weight. In the meantime, the periods got more severe.
On Sept. 8, 1997, my gynecologist did a complete hysterectomy. When I woke up, I was told I had ovarian cancer. He’d found tumors on both ovaries and a spot on the liver; it was staged as III-C.
I was completely surprised. I had never heard anything about ovarian cancer until that time, much less suspected that I had it. I’d never had a trans-vaginal ultrasound, a CT scan or even a CA-125 blood test.
After the surgery, my doctor wanted me to see a medical oncologist. My daughter, who works at a hospital, insisted that I see a gynecologic oncologist. He ordered six rounds of chemotherapy. I worked part-time during the chemo, and that helped keep my mind off everything.
At this point in my life, I was widowed (my husband had passed away in 1989) with four children and seven grandchildren. My family, friends and faith helped get me through this experience. My employer was very understanding.
The chemotherapy put me in remission. For the first five years, I returned every three months for an exam and CA-125. After the fifth year, that interval increased to six months. Last year, I graduated to annual visits. My last CA-125 level was 6.
Only recently have I begun to consider genetic counseling and testing. I don’t have a significant history of cancer in my family; one first-cousin had breast cancer and an aunt had what was called stomach cancer at the time. I want to do it for the sake of my children and grandchildren.
In the years following my treatment, I was involved in a survivors’ support group at Barnes-Jewish Hospital, the Together group. One of its members, Christina Carr, approached me about forming an organization to raise awareness of ovarian cancer. I had a passion to spread the word about ovarian cancer, so I immediately said yes.
Along with five others -- survivors of ovarian cancer and chemo nurses -- St. Louis Ovarian Cancer Awareness was born in June 2002. Since then, I have served as Secretary, Treasurer and now President until June 30, 2009. Being involved with SLOCA has given me the opportunity to achieve my goal of getting information to women about ovarian cancer.
SURVIVOR STORY #2
Lisa was 45 years old when she was diagnosed in February 2006 with Stage I ovarian cancer and Stage 1 endometrial cancer, concurrently. She is in remission. Here is her story:
I am the fourth member of my family to be diagnosed with ovarian cancer. None of them was a first-degree relative. My mother is still living and healthy, and I do not have a sister or daughter. An aunt was diagnosed with ovarian cancer about 10 years ago and her gynecologic oncologist told her to alert other family members. Ovarian cancer can be hereditary.
I saw several doctors and asked questions. I was told that my aunt was not a first-degree relative and that I was very young and probably not at risk for the disease.
There is no simple diagnostic test to determine if you have ovarian cancer or to determine whether a woman will be affected with it later in life.
About two years before my cancer diagnosis I had a trans-vaginal ultrasound to help explore why my husband and I could not conceive. It showed that one ovary was slightly enlarged, but this was attributed to endometriosis. I was beginning to experience some of the symptoms of ovarian cancer, but they were mild and individually did not set off any alarms.
In 2005, I began to experience a very heavy and irregular menstrual flow. In February, I called my gynecologist and we scheduled a D&C and ablation. The tissue removed during the procedure indicated that I had endometrial cancer. I was assured that a hysterectomy would alleviate the situation because the doctor saw nothing during the procedure to make him suspicious and the cancer was very small. We scheduled the hysterectomy to be done laparoscopically by a gynecologic oncologist.
I was told the next morning that there was cancer in an ovary. I knew from experience that there would be more surgery and tests and it would take a few days or even weeks to get a definitive diagnosis and treatment plan. I was the first member of my family to go to college and I now had the distinction of being the youngest ever diagnosed with cancer.
The next surgery was an omentectomy and further removal of lymph nodes in my abdomen. This was also done laparoscopically. I was eventually diagnosed with Stage I endometrial cancer and Stage 1 ovarian cancer, concurrently. I had three treatments of chemotherapy and have since been healthy with no recurrence.
SURVIVOR STORY #3:
Sandy Zahner was diagnosed with Stage III-C ovarian cancer in March 2006 at the age of 60. She is in remission. This is her story:
Four months before I was diagnosed, I felt pressure on my bladder. In January 2006 I was having very small but odd sensations in my abdomen. It was not actual pain but more like a short burning twinge -- almost like a nerve ending. I also noticed my lower abdomen getting larger. I had been diagnosed as being lactose intolerant 10 years earlier and thought that was to blame. I hang wallpaper and noticed that when I stretched I felt a sharp pain in my lower right side with a numbing pain going down my front thigh. I also felt fatigued, but assume that was due that to the holidays and to my physical job.
I went to my primary care doctor the first week of February and he treated me for Irritable Bowel Syndrome. I went off dairy products. When I returned three weeks later, I was somewhat better but still felt pressure on my bladder. I told him that maybe I should see my gynecologist. He said he would schedule a transvaginal ultrasound. That showed a pelvic mass. The doctor then scheduled a CT scan. Based on the result of that CT scan, he told me I had ovarian cancer.
Before I left his office, he helped me get an appointment with a gynecologic oncologist and a plan of action. That helped get me through the shock of the diagnosis, but I wish he had expressed some optimism for me.
When I saw my gynecologic oncologist a week later, I was afraid the disease was too advanced to treat. But she told me that most of her patients are at an advanced stage. She told me I was treatable. She recommended a hysterectomy and oophorectomy, followed by intraperitoneal chemotherapy, which I did in a clinical trial. She told me it would be a difficult six months but then I would be able to go on with my life. That encouragement made me feel so much better.
After the first treatment I thought, “This isn’t as bad as I thought it would be,” and I felt more optimistic. Seven weeks post-op I was able to go back to golfing, babysitting and work.
When the oncologist took my family history and learned that I was the fourth woman in my family to have ovarian cancer she recommended genetic counselling and testing after I finished my treatment. She felt there might be a gene mutation in my family. My cousin was diagnosed in 1977 at the age of 38. I had another cousin, 45, who was diagnosed in 1996. My niece, also 45, was diagnosed in 2004.
I had genetic testing and tested positive for the BRCA 1 gene. This is a mutation of the 17th chromosome. I inherited it from my father. My children have a 50 percent chance of being carriers. This mutation puts me at a higher risk of breast or colon cancer. Two of my nieces were subsequently tested and found they were positive for this mutation. Both had oophorectomies, and no cancer was found. A great-niece who tested positive plans to have her ovaries removed after she has her children. I cannot stress enough the importance of paying attention to family history.
I want every ovarian cancer patient to know that life can go on after treatment. I’m very active. I baby sit my two grandsons, ages three and four, two days a week. In the winter I bowl two days a week. In the summer I golf three days a week. I also travel for golf several times a year.
I participate in a monthly gynecologic cancer networking group at the Wellness Community of Greater St. Louis. I get a lot out of sharing stories and experiences with my peers. I also have gotten involved recently with SLOCA. It’s another great group with purpose.
SURVIVOR STORY #4:
Jan Paul was 52 when she was diagnosed with Stage III-B ovarian cancer. She is in remission. This is her story:
I was lucky. A deep vein thrombosis (DVT) surfaced while I was vacationing in Delaware and made me finally investigate what was causing some vague symptoms I’d been ignoring – namely, a 25-pound weight loss and some nausea. It was ovarian cancer. A hematologist put a name to the vague symptoms and started me on the road to recovery and, I hope, a cure.
But before we go there, allow me back up a bit. I was a reporter and editor for the St. Louis Post-Dispatch for 27 years before retiring in the fall of 2005 to become a horticulturist and landscape designer. I went from working a desk job to pushing wheelbarrows and dragging heavy bags filled with yard waste. My first spring season consisted of long, physical days, but I felt strong and happy. I began shedding pounds like sweat – and didn’t suspect anything was amiss. In fact, I bragged about my weight loss. First 10 pounds, then 15, 20 and 25. Midway through that weight loss, though, I began feeling a little nauseated and my stomach felt full halfway through a meal. I told my internist, but she didn’t seem concerned.
In July, my husband and I drove to the East Coast to visit family. While there, my leg swelled from the ankle to the mid-thigh and throbbed with pain. I went to the ER in a Wilmington hospital and an ultrasound confirmed a DVT in two veins in my left leg. The doctors admitted me.
A hematologist there consulted on my case because of my family history – both my mother and older brother had had DVTs. The doctor urged me to consult a hematologist when I returned to St. Louis. I saw my internist first. She still didn’t connect any dots – DVT, weight loss and nausea that now was causing me to vomit once or twice a week. I saw a hematologist two weeks later. He immediately suspected cancer.
Within a few days, I’d had a transvaginal ultrasound, a CT scan and extensive blood work. A couple of days later, the doctor called to announce that I’d been the topic of conversation at the weekly tumor board. Not a good sign. The rest of that day – and the ensuing week – was a blur. I met with a GYN oncology surgeon and we scheduled a hysterectomy for a week later.
I was surrounded by family and pastors the day of the surgery, and that helped me stay relatively calm. Just before going under the anesthesia, I thought to ask the surgeon what the blood tests had shown. (I was so ignorant of the details of my potential disease that I didn’t even know what a CA-125 was.) He answered with a vague “it was a little elevated.” I didn’t press him further and wasn’t alarmed. (I later found out it was more than 23,000, when the standard is under 30.)
When I came to that night, I learned they’d found masses on the ovaries. A few days later, the pathology came back. It was ovarian cancer, Stage III-B.
My gynecologic oncologist offered me a new protocol of chemotherapy that had been implemented just six months earlier. It combined the standard intravenous chemotherapy with an intraperitoneal infusion – that is, directly into the abdomen. He told me it would be a very difficult course of treatment but that it offered the chance of more time. I took it. He was right about the rigors of the chemotherapy. For me, it was painful and produced several side effects, some of them enduring but none intolerable. I emerged feeling stronger and in control.
With no recurrence to date, my oncologist marked the two-year anniversary of my remission by taking out my port. It felt like a triumphant moment. Still, I don’t know what the future holds. I know I could have a recurrence at any time but I try not to think about that. I’m living each day, grateful for another chance, and I’ve learned to stop thinking of myself as a cancer patient.
I know that if I had paid attention, I might have been diagnosed at an earlier stage – giving me a better prognosis. But I don’t look back. I’m doing what I can to spread the word to medical students and doctors to listen carefully to their patients, and to women to be diligent in investigating changes in their bodies that persist two weeks or more.
In my case, it was weight loss, not weight gain. Nausea and uncharacteristic abdominal fullness. A strong urge to urinate. Ultimately, a blood clot led to my diagnosis. I was lucky.
SURVIVOR STORY #5:
Barb, who was diagnosed with ovarian cancer at Stage III-C, has been in remission since September 2006. This is her story:
I retired in November 2005 and noticed that my pants were getting tight around the waist. I had to go up a size, but I blamed that on being less active in retirement. As the months passed, I became very bloated. My appetite was poor, and I felt full quickly. Even so, I couldn’t lose a pound.
My annual appointment with my gynecologist was due to occur in March. I don’t know why but shortly before that I had a premonition that I should look up the symptoms of ovarian cancer. I searched the Internet and discovered I had most of the symptoms. I moved up my
gynecological appointment a week earlier. When I saw her, I told her I suspected I had ovarian cancer.
The doctor responded, “You are just getting older.” That was true, but unfortunately, that wasn’t the correct diagnosis. She gave me a pelvic exam and said my ovaries were not enlarged. She prescribed the only tests available right now, and I trotted down to the lab for a CA-125 blood test. The next day, I had an internal ultrasound.
Since my parents had lived into their 90s and my uncle lived to 100, I truly expected to have the genes of eternity. Two days after my tests, the doctor called to say, “You were right. You have ovarian cancer.”
I was living in Ohio at the time, and I had a hysterectomy there. I was staged at III-C. Some of my cancer was clear cell, a more aggressive form of ovarian cancer. I had six sessions of chemotherapy; carboplatin was delivered through an intraperitoneal (abdominal) port and taxol was infused through an intravenous port one week; the next week, I had taxol through the IV port again. Six weeks later I started another trial of Xyotax for maintenance. That continued once a month for 12 months.
As of September 2006, I have been in remission for two years – or, as the doctors say, NED (no evidence of disease). That’s the goal of all cancer survivors.
SURVIVOR STORY #6:
Carolyn was diagnosed in April 2005 with Stage III-B ovarian cancer. She is currently in remission. Here is her story:
I was diagnosed with ovarian cancer in April 2005. I was 65 years old.
I had a routine gynecologic exam in March of that year. Afterwards, the gynecologist called to tell me that my Pap smear results showed a Class 4, adenocarcinoma. I cried because I figured it was probably cancer. I realized crying wasn’t going to change things, so I took myself shopping.
The gynecologist wanted to see me again. She did a scraping, but got no tissue. She then did a D&C, but still got very little tissue. She ordered a trans-vaginal ultrasound and referred me to a gynecologic oncologist.
I saw the GYN oncologist the day after the D&C. He examined me and said he could not make a definite diagnosis until he reviewed the slides from the D&C and other information from the gynecologist. He ordered a CT scan and then scheduled a surgery.
In the surgery, in April 2005, he did a complete hysterectomy with salpingo-oophorectomy. He also took out the omentum, which had metastatic cancer, and some lymph nodes.
It wasn’t until the day after the surgery, when my daughters repeated the results of the surgery, that I knew I had ovarian cancer. It really shocked me. I had had no symptoms. I was just going for my annual exam.
Six weeks after surgery I started on my first round of chemotherapy. I have since completed two more rounds of chemotherapy. In December 2008, a CT scan was negative and my CA-125 was 8.
I also have MS and I had breast cancer in 1994. After the ovarian cancer diagnosis, I underwent genetic testing but it was negative for the BRAC-1 and BRAC-2 genetic mutations.
I feel that I am a very rare person in that the cancer was found on my yearly Pap smear, which tests for cervical cancer and not ovarian cancer. A pathologist told me the ovarian cancer cells had probably fallen on the cervix, making them detectible on the Pap smear.