They say that ovarian cancer is the disease that whispers, never declaring itself until the battle is in full swing - and then the symptoms are still often not recognized for what they are. And if the symptoms are mere whispers of the disease, the silence of its victims is deafening.
Although ovarian cancer is not as common as breast cancer, it is more likely to kill because it is usually found in the later stages, when the prognosis is not good. Caught early and treated, prognosis is excellent.
To date there is no screening test for ovarian cancer.
The month of September is Ovarian Cancer Awareness Month and we’ve teamed up with the National Ovarian Cancer Coalition Tucson Chapter to share the stories of the women and their families who have faced the Silent Killer. Our goal? To end the silence, to hear the whispers of ovarian cancer, to recognize the symptoms, and to be strong advocates for our health when we meet with a medical professional.
Our first story is from Alice.
At 45 years old Alice appeared to all to be in excellent physical condition and was about to embark on a new career in nursing. In the previous six months she had run an eight-mile race in September and hiked 24 miles in the Grand Canyon in November. We join her story in January of 2010.
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…On Saturday, January 30, 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 six hours between bathroom breaks. On Monday morning I set out running with my husband but after half a 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.
Alice met with her primary care physician, who after checking that she didn’t have a UTI, scheduled her for a transvaginal ultrasound.
He called me at home that night to tell me I had an 11 cm cyst on my right ovary…Next I went to see my gynecologist…I had seen her nine 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.
Luckily, the gynecologist didn’t stop there. She also did a CA 125 blood test. The Cancer Antigen 125blood test isn’t usually recommended for women with an average risk of ovarian cancer. CA 125 might be elevated for a number of other reasons, and in some women with ovarian cancer, it may not be elevated at all. However, in Alice’s situation a high end of normal test result prompted the gynecologist to recommend a visit to a gynecological oncologist surgeon.
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.
My surgery date was five weeks after my first symptoms appeared.
The symptoms of ovarian cancer are subtle and can easily be dismissed
Alice and her husband were told the surgery might last two or three hours. It took over seven hours.
I had a 9 cm 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…When I woke up from the anesthesia the oncologist told me I had ovarian cancer…My cancer was stage IIIB . Histology results showed there was no cancer in my lymph nodes.
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.
Treatment after removal of all visible tumor material didn’t end:
I started chemotherapy two weeks after my surgery. The decadron made me jumpy, irritable, caused acne breakouts, and made me sleepless after 3 am. 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 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 three more months of treatments. During the final six 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 seven 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 two or three 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 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, which gave me a focus other than my cancer.
Now I have been cancer free for almost three years. I have checkups with my oncologist and CA 125 checks every six months. My CA 125 is normal at 12.
Today Alice is working full time as a hospital nurse in a cardiac intermediate care unit.
What are some of the risk factors for ovarian cancer:
Alice’s risk factors for ovarian cancer might be considered low, but she listened to her body, didn’t dismiss what might otherwise have been described as everyday discomforts, abdominal pain, urinary changes, and sought medical attention.
Average age of ovarian cancer diagnosis: 64. At 45, Alice was younger than the average age of onset for ovarian cancer .
Women with a BMI greater than 30 tend to have a higher rate of ovarian cancer. An avid runner and hiker, Alice was in excellent shape.
BRCA 1 & BRCA 2 Mutation
Subsequent to finding out she had ovarian cancer Alice was tested for the BRCA 1 and BRCA 2 mutation. People with BRCA 1 and BRCA 2 mutations have a significantly higher risk of ovarian and breast cancer, but Alice tested negative for those mutations.
Family History of Uterine and Colorectal Cancer
Family history of uterine, colorectal, breast and ovarian cancer is associated with a higher risk of ovarian cancer. Alice has a maternal aunt who is a survivor of uterine cancer, and a paternal uncle who died from colon cancer. Her paternal family has a history of colon polyps.
Women who have used the pill have a lower risk of ovarian cancer. The risk is lower the longer the pills are used. This lower risk continues for many years after the pill is stopped.
You can read more about additional risks here.
The National Ovarian Cancer Coalition raises the voices of survivors and victims’ families, to raise awareness, to end the silence, so that women know the symptoms. Our local Tucson chapter provides support and focuses on awareness and education. Check them out on Facebook.
September is Ovarian Cancer, Prostate Cancer and Childhood Cancer Awareness month.
If you were given the chance to save one person you love from a cancer diagnosis would you take it? Here is your chance – The American Cancer Society is currently registering and enrolling Tucsonans for a longitudinal study (CPS-3) and Tucson Medical Center will be an enrollment site. It takes about half an hour for the initial appointment, a little time filling out a survey, no cancer diagnosis other than basal or squamous cell cancers, and between the ages of 30-65. For more information watch ourTMC for Children blog for an upcoming post with a personal story and the importance of CPS-3 and check out the American Cancer Society’s page.