In 2005, when Lindsay T. was 17 years old, she was diagnosed with stage 1 ovarian cancer. Now 29, Lindsay lives in Dallas and works as an art director for a rug manufacturer.
My symptoms started at the end of my junior year of high school, right after I turned 17. As a competitive cheerleader, I was very active and worked out every day. Around March 2005, I noticed my stomach was distended, like I had just eaten a really big meal. My arms got really skinny, too, which my doctor later explained was my body protecting the tumor by moving all the water weight in my body to my stomach. Although I also probably had abnormal bleeding and cramping, I didn’t realize it because I had only started my period at 15 and wasn’t regular yet.
Over the course of six weeks, I went to the doctor three times. My symptoms kept getting worse, but doctors couldn’t figure out what was causing them. At first they thought I had a bowel obstruction and put me on milk of magnesia (terrible!). Finally, they gave me a blood test and found a tumor marker. The next day, I had a CAT scan and they found a grapefruit-sized tumor on my left ovary. At that point, my stomach was so distended that I looked like I was six months pregnant. My doctors didn’t know yet whether it was cancer, but they wanted to remove it immediately.
Getting my ovary removed
In May 2005, two to three days after my doctor found the tumor, I had surgery. They removed the tumor, my left ovary, and my left fallopian tube, but they didn’t touch my right side or my uterus. Once they removed the tumor, they tested it and confirmed it was cancer.
When I woke up from surgery, my doctor told me it was malignant germ-cell cancer, but luckily it was stage 1. I also found out then that the night before surgery, the tumor had started to metastasize and burst. I didn’t feel it happen, but it meant that there were still cancer cells floating around in my body and that I’d need chemo even though they’d removed all of the tumor. I remember being very calm, which is strange because I’m usually very emotional. Throughout all of it, I don’t think I even cried-I was in survival mode. I stayed in the hospital for two weeks. We told all my friends and family, and people visited almost every day and brought me gifts. I felt very supported.
I was terrified to go through chemotherapy. It started when I was in the hospital and lasted all of summer break, from about May to August. Fortunately, I only lost my hair, not my eyebrows or eyelashes, and I didn’t get very sick. But I hated that I was treated differently. I felt very self-conscious. Because I was 17 and didn’t have hair, people stared. Random strangers, usually adults, came up to me at department stores and asked questions, like what happened or what cancer I had. They were just curious, but I was already very shy and it made me feel insecure. I told them I had ovarian cancer and was going through chemo. Over time, it got to the point where I had a script.
But there was an upside: Before all this happened, I was very shy and introverted. Going through cancer and chemo made me realize that I should put myself out there and be more social. I started going out more, being a normal 17-year-old. Spending time with friends was how I coped.
By the time I went back to high school for senior year, I was done with chemotherapy. I live in a tight-knit community where word travels fast, so almost everyone knew what I was going through. Still, a few people at school were shocked when I came back without hair. My classmates and teachers didn’t treat me differently, though. They just made me feel like regular kid, which is what I wanted.
A random accident
In September 2005, right after I finished chemo, both my mom and I took the BRCA test. [Note: The BRCA1 and BRCA2 genes help control cell division, growth and DNA repair; mutations can increase the risk of being diagnosed with breast and ovarian cancers, especially early on in life. If one parent has a mutated BRCA gene, you have a 50 percent chance of inheriting it.] The test came up negative. I also don’t have a family history of ovarian or breast cancer (5 to 10 percent of breast and ovarian cancers are hereditary, according to Memorial Sloan Kettering Cancer Center). My doctor told me one of my germ cells just randomly went rogue and started reproducing like crazy. I wasn't in remission until I had normal CAT scans and ultrasounds for a full year.
My life after cancer
For that year after my surgery, I had follow-up appointments every three months to get blood work, physical exams, sonograms, and CAT scans. They were really long appointments. The CAT scans were the worst since I had to drink a barium solution, which tastes like old toothpaste, an hour beforehand. I hated that stuff! One time when I was going through chemo, I had to get a CAT scan. I was so nauseous that I threw up everywhere. It was embarrassing, even if they did understand.
These days, I only go once a year for a regular well-woman exam, where I also get a sonogram, but that’s it. As a preventative measure, my doctor put me on birth control saying it could reduce the risk of recurrence, but he didn't recommend other drugs or surgery.
Since having cancer, my doctors also have me keep a journal where I write down if I have abnormal cramping or periods. My ob-gyn and I go over it together at every appointment. I’m actually almost too aware of the signs of ovarian cancer, so I go in for any weird symptom. Last year, I saw my doctor about five times. There hasn’t been any sign of recurrence, but I did have an ovarian cyst removed about a year ago. Doctors don’t think there was any relation to cancer, but it’s something they’re keeping an eye on with sonograms about every six months.
About four years ago, I met my boyfriend, Kelly. On our second date, he told me his mom was going through breast cancer and just got the all-clear. That was when I told him about my experience with ovarian cancer. It was a bonding moment-it immediately brought us closer. This past June, we got engaged, and we’re getting married in March.
Kelly and I have talked about having kids. It is a concern it will be harder to get pregnant because I’m down an ovary, and because of the chemo and the surgery to remove the cyst. After talking with my current ob-gyn, I visited a fertility clinic this June so I could be aware of my options even though we’re a couple years away from having kids. The clinic recommended freezing my eggs immediately and going through IVF. Afterwards I was upset, so I went back to my ob-gyn. She explained that people get pregnant in every way, and it doesn’t have to be through IVF-it just depends on my body and cycle. She left it up to me to decide, but she did say sooner is better. So I’m still thinking about it. IVF is so expensive; we’d really have to save up and plan for it. We’re trying to buy a house now, too, so it’s a lot to figure out all at once.
So how did ovarian cancer change me? If anything, going through ovarian cancer helped me to become more social and to listen to my body. I don’t try to push myself like used to-I know my limits and make sure to take the time to relax, get enough sleep, and exercise regularly. I believe if you’re healthy and active, you can catch it earlier because you’re more in tune with your body and the signs that something’s wrong.
According to the American Cancer Society, ovarian cancer is the fifth-leading cause of cancer deaths in women: In 2017 about 22,440 women in the U.S. will receive a new diagnosis, and around 14,080 will die from the disease. About half of cases occur in women age 63 and older, with less than 2 percent of women diagnosed before the age of 20, according to the Ovarian Cancer Research Alliance Fund. The five-year survival rate is 46.2 percent, with survival odds increasing the earlier the cancer is diagnosed-though only about 15 percent of women catch ovarian cancer in its earliest stages. Overall about 70 percent of patients with ovarian cancer will have a recurrence; that number drops to 10 percent among women who are diagnosed in stage 1.
That’s why it’s important to know your risk and recognize the symptoms of ovarian cancer, which include bloating, pelvic or abdominal pain, feeling full quickly, always feeling like you have to pee, constipation, abdominal swelling with weight loss, menstrual changes, and pain during sex. Since many of these are caused by other conditions, symptoms should be persistent, a marked change from normal, and occur at least 12 times per month. To find out your risk of ovarian cancer or volunteer, visit BrightPink.org.
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