Alice Stone wrote this story for a program called Survivors Teaching Students which is organized by the Ovarian Cancer National Alliance. Each month a group of ovarian cancer survivors meet with 3rd year medical students doing their OB/GYN rotation and present the story of our diagnosis and treatment, with an emphasis on symptoms and risk factors they can watch for in their patients. Alice is the daughter of CRC volunteer Nancy Istock.
My name is Alice Stone. I have been married for almost 25 years and I have a 20 year old daughter. I have a degree in biology and I have worked as a science teacher, in biomedical research laboratories, and recently I went back to school for a nursing degree. I am 49 years old and I was diagnosed with ovarian cancer at the age of 45.
In January of 2010 I was working full time in a research lab, and I had just completed all of my prerequisite classes and applied to nursing school.
As far as I knew, I was in excellent physical condition during the 6 months prior to my diagnosis. I ran an 8 mile race in September and hiked 24 miles in the Grand Canyon in November.
On Saturday January 30, 2010 I went for a 3 mile run and noticed some discomfort in my lower abdomen, but I finished the run and didn’t think much about it. On Sunday I went hiking and noticed that it felt like I needed to urinate when my bladder wasn’t full, and I can usually go 6 hours between bathroom breaks. On Monday morning I set out running with my husband but after 1/2 mile I stopped and said to him “something isn’t right, I’d better walk back and try to get in to see my doctor today”. I thought maybe I had a urinary tract infection.
My PCP did a urine dipstick test that was negative for UTI. He scheduled me for a transvaginal ultrasound a week later. He called me at home that night to tell me I had an 11cm cyst on my right ovary.
Next I went to see my gynecologist. I had been her patient for several years. In 2007 she had placed a hormone-free IUD for me when I worried that birth control pills had caused my gall bladder disease. I had seen her 9 months earlier for a normal pap/pelvic exam. She did another pelvic exam and told me that the position of the cyst suggested it was not cancer. She also did a CA 125 blood test and the result was 35, at the high end of normal range. The size of the cyst meant that I needed surgery, and my doctor said I should go to a gynecological oncologist surgeon just in case it turned out to be cancer.
Two weeks later I had my interview for nursing school and felt like I nailed it. I was really not worrying about the possibility of cancer since I didn’t feel bad and was doing my regular work and riding my bike a lot instead of running. I wonder if I had not been a runner or if I had been more distracted by life stressors if I would have even gone to the doctor when I did, since my symptoms were so subtle.
At my appointment with the surgical oncologist. I remember thinking, “this is silly that I’m having an appointment at a cancer center, since I don’t have cancer.” We scheduled the surgery for March 6, and the oncologist ordered another CA 125 and ultrasound for March 5. This CA125 result was double my first value, and the ultrasound showed a more suspicious structure to the cyst, so the oncologist called me the night before surgery and said it seemed too risky to perform it laparascopically, instead I should have an open laparotomy. During that day I had begun to suspect cancer because I felt like fluid was collecting in my abdomen, and I had done research involving mice with tumors that produced ascites fluid.
My surgery date was 5 weeks after my first symptoms appeared. My husband and I were told the surgery might last 2-3 hours. It took over 7 hours. I had a 9cm tumor on my left ovary , the 11cm tumor on the right ovary, as well as cancer on my fallopian tubes, in my omentum and on my diaphragm. Specialists were called into the operating room to examine my liver and GI tract, and no cancer was found on these. During the surgery my husband consented to have an abdominal port placed for intraperitoneal chemotherapy.
When I woke up from the anesthesia the oncologist told me I had ovarian cancer. She said it was a very clean surgery, and that all spots of cancer that could be visualized (1mm or bigger) had been removed. My cancer was stage IIIB . Histology results showed there was no cancer in my lymph nodes. I developed a pleural effusion during my hospitalization and had to have a liter of fluid removed by thoracentesis. The fluid was spun down to check for cancer cells, and there were none, which was reassuring.
The day that I got out of the hospital I checked my email. I had been accepted to nursing school with a full tuition sponsorship. I was happy to know that I really did nail the interview and sad to have to turn it down to focus on my cancer treatment.
I started chemotherapy 2 weeks after my surgery. I had a combination of intraperitoneal and intravenous chemo. Because of an allergic reaction to taxol, I had to take steroids on the days leading up to each treatment. The decadron made me jumpy, irritable, caused acne breakouts, and made me sleepless after 3am. The steroids also caused a dramatic change in my appearance and I felt that I couldn’t recognize myself in the mirror. The chemo drugs (cisplatin and taxol) caused nausea and bloating and I lost all my hair including my eyebrows. I did enjoy wearing colorful scarves and decorating my bald head with temporary tattoos. The anti-nausea medications worked very well and I did not lose weight during chemo. After four months of chemo treatments my oncologist told me she was worried that my cancer might be platinum resistant. She felt that I should have 3 more months of treatments. During the final 6 weeks of chemo I really felt the fatigue. I could barely do any exercise. I continued to work part time but had to take one or two days off from work after each chemo treatment.
I tolerated 7 months of chemo. I had to stop when my blood cell counts dropped dangerously low. During chemo my CA 125 was also checked frequently. It stayed elevated throughout the chemo and did not drop to normal levels until 2-3 months after I finished.
Before the first anniversary of my surgery came around I had to decide whether or not I would re-apply to nursing school. I met with a psychiatrist at the cancer center who helped me with this decision. I decided to go for it. I had my second interview with what I hope looked like a very short haircut! I was fortunate to be accepted a 2nd time and going back to school turned out to be a very good decision as it gave me a focus other than my cancer.
Now I have been cancer free for almost 3 years. I have checkups with my oncologist and CA 125 checks every 6 months. My CA 125 is normal at 12. I am working full time as a new-grad hospital nurse in a cardiac intermediate care unit.
I want to mention something about my risk factors for ovarian cancer. I have an aunt on my Mother’s side who is a survivor of uterine cancer, and an uncle on my Father’s side who died from colon cancer. My Dad and all of his siblings have had colon polyps removed. Both uterine and colon cancer are linked to ovarian. I also quit taking birth control pills 3 years before my diagnosis, and switched to a hormone-free IUD for birth control. I wonder if I staying on birth control pills would have prevented my cancer. I was tested for BRCA 1 and 2 and I do not carry either of those mutations.
By Alice Stone
