Ovarian Cancer: One Woman’s Story

If your family history puts you at higher risk for ovarian cancer, how far would you go to prevent it? To mark National Cancer Survivors Day, one woman looks back on her battle with this silent killer... What you don't know about your family’s health history can hurt you. But what you do know can be harmful too, especially when it comes to ovarian cancer, the fifth-leading cause of cancer death in women, according to the National Cancer Institute. Mom of two, Maxine Levine was 38 – and considering a third – when her doctor found a growth on her ovary. Because of a family history with ovarian and breast cancer, Maxine's doctor recommended an oophorectomy, a procedure in which both ovaries are surgically removed, reducing the risk of ovarian cancer by at least 90% and breast cancer by up to 50%. About 300,000 women undergo the procedure annually in the U.S. But it’s a “major, life-altering decision,” says Peter Weiss, a Beverly Hills gynecologist and obstetrician who performs oophorectomies. Especially if a woman’s considering kids. Once both ovaries are removed, she’s permanently infertile. Removing the ovaries also causes early menopause, which can raise a woman’s risk of hot flashes and vaginal dryness, osteoporosis and heart disease, Weiss adds. Doctors are able to freeze eggs or fertilize embryos before surgery for implantation later into the woman (if the uterus is retained) or a surrogate, says Weiss. But these options are costly and have their own risks, which should be discussed with your doctor. Maxine, now a 57-year-old Los Angeles psychologist, shares why she chose surgery and how her cancer struggle didn’t end there. Does ovarian cancer run in your family? Yes, my mother had it at about age 48 and had her ovaries removed then. She also had breast cancer at 38 or 39. My sister was diagnosed with, and died of, breast cancer at 38. When your doctor found the growth on your ovary, did their cancer influence your decision to have your ovaries removed? It was paramount in my decision. Because of my family history, my doctor encouraged me not to wait to see what [the growth] was but to have laparoscopic surgery and look at it directly. First, I had a pelvic ultrasound. It appeared that I was negative for ovarian cancer, but it wasn’t conclusive. I was encouraged to have an oophorectomy. This was before genetic testing was available. If I had had access to that testing then, I would have known for sure that I was at higher risk for ovarian cancer, and removing my ovaries wouldn’t have felt so radical. After the doctor planted the idea of oophorectomy in my head, there was no going back. The worry about the ovarian growth and my family history convinced me it was the right thing to do. I scheduled the surgery, and it was done within three months. How was your recovery? I felt physically horrible after the surgery, like a truck was sitting on my body. I’m in good physical shape. I run, so I thought I’d recover quickly. But it took longer than I expected – six full weeks. How did you feel emotionally after surgery? I was worried about lab results. I worried about what the surgery would mean regarding estrogen [and] my womanhood. But my primary emotion was relief – I didn’t have cancer! There definitely was sadness too. Because my sister had died of breast cancer three years earlier, I already knew I had to be super-vigilant about my breast health. That meant not having a third child, because I couldn’t risk the extra estrogen produced during pregnancy, and I couldn’t have a mammography. I had two children; they were 5 and 8 at the time of the oophorectomy. So I felt lucky in that regard. Still, I felt a loss. I also felt anxiety about the future and what it would be like to be 38 without hormones. How would it affect my sex life? Would I grow a beard? But every time I read articles about ovarian cancer in magazines, I felt a wave of relief [that I'd had the surgery]. And I felt somewhat empowered – I had some control over my fate, which would, hopefully, be different than that of the women I read about. I felt I didn’t have to go down that same road. How did you feel about your post-surgery hormone replacement therapy [to compensate for the estrogen your ovaries would have been producing]? I felt confused about hormone issues for a long time, given my family history of breast and ovarian cancer. Like most women who have their ovaries removed before menopause, I needed the extra hormones for heart health and bone density and took them for several years, but I was worried about it. Would it increase my risk of breast cancer? My doctor convinced me there was no other option at 38, [so] I stayed on them until my mid-40s, when women have natural menopause. I always had a nagging feeling, though, about that increased risk. At 44, I went to an endocrinologist. I was considering taking the drug Tamoxifen, which helps reduce the chance of breast cancer in women at high risk for the disease. The doctor encouraged me to have genetic testing first. That December, at 44, I was tested for the BRCA gene mutations [and] found out I was BRCA1-positive. [Women with the BRCA1 (breast cancer gene 1) mutation have a 35%-70% higher risk for ovarian cancer than women without it; with the BRCA2 (breast cancer gene 2) mutation, it’s 10%-30% higher.] What was the impact of that news? Huge; I was quite devastated. Even though I always saw myself as high risk because of my family history, as the years went by and I didn’t get sick, it psychologically crept into my mind that I had dodged that bullet. Nothing like confirming your worst fear! I felt I was waiting for a bomb to go off. And it did one month later, when I was diagnosed with breast cancer. What did you do? Because my cancer was barely stage 1, I could have been treated with just a lumpectomy. But I chose a double mastectomy because of my genetic [history]. This involved more complex surgery than the oophorectomy and it took longer to recover, [because of] the reconstruction. It was much more of an ordeal, and it had a big emotional impact. Why? I worried whether I looked natural. Should I hide myself at the gym? Unlike my ovaries, which are internal, I felt more concerned with my physical appearance. Turns out everything was fine in that regard: The reconstruction and tattooing made my breasts look natural, and I look good in a bra. My husband validated my appearance, which made me feel good. Are you glad you had these surgeries? Absolutely! I can’t imagine having to live all these years with the worry about my ovaries and breasts. I still don’t have a totally clean slate – there's always that fear of peritoneal cancer [a rare form of the disease affecting the peritoneum that behaves like ovarian cancer but minimally involves the ovaries] after an oophorectomy because the surgery doesn’t guarantee I’m free and clear. The other reason the oophorectomy was worth it is that I was told by two doctors that my surgery staved off my breast cancer for six years. Both my sister and my mom had breast cancer at 38. I had my oophorectomy at 38 and got cancer at 44. I have no doubt that not having the estrogen for six years or so put off my breast cancer. That [alone] reconfirms my [decision]. The surgeries have given me power and the spiritual acceptance that I’ve done everything I could to protect my health. I’ve never looked back, and I’ve never regretted the surgeries. Which medications do you take? I took Tamoxifen after my breast cancer. Given my genetic history, there was no choice. I took it for five years, which is standard. I had no side effects from it. I also underwent chemotherapy. A few years after my oophorectomy, I had a bone-density test and discovered I had osteopenia in my spine and femur – that’s a serious thinning of my bones. So I began taking Fosamax and still do. I’ve been taking statins for one year because my cholesterol went up. I’m not heavy and I eat well; I believe the rise in my cholesterol has to do with the lack of estrogen. I also take calcium. Do you have any advice for women thinking about oophorectomy? So much depends on whether you’ve had children or not. I would have been willing to take more risks with my ovarian health if I’d not had children and wanted them. Even though I wanted a third child, I dealt with that and it was OK. But who knows what would have happened? The child-bearing situation is critical. So is your family history. Some people get scared when they hear ovarian cancer can have a genetic component. And it depends on the age of the relatives who had it. Pre-menopausal ovarian cancer raises the risk for family members. Go to a geneticist and get tested so you can feel very clear about [the BRCA] gene. But remember, you have to be really careful about your choice – it’s a big deal. I didn’t like [having the] surgery and all the repercussions. But it’s so well worth it for the relief. Most importantly, consider that psychological relief. I would take advantage of whatever I [could] not to get ovarian and breast cancer. If surgery is the way to do that, then go for it!