During October — Breast Cancer Awareness Month — “Pinktober” activities extend from fundraising walks and public service ads to NFL players wearing pink shoes.
But ovarian cancer, though not nearly as publicly visible as breast cancer, is far more deadly. According to American Cancer Society statistics, breast cancer claims about 16 percent of its initial survivors — while the overall mortality rate for ovarian cancer is 63 percent.
While most women don’t have any apparent risk factors for the disease, about 15 percent of those diagnosed with ovarian cancer carry mutations in one or both of a couple of specific genes: BRCA1 or BRCA 2, both of which raise breast and ovarian cancer risk precipitously. Patty, a survivor of both cancers, is one such woman. Here’s her story.
I really felt fine!
It was 2009, and I was working full time in the music department in our local school system. I went to see a doctor because I woke up one morning with a bloody discharge — looked like I was having a period, but I knew that was impossible; I’d been thrown into menopause 12 years earlier by breast cancer chemo treatment.
I really had no idea what was going on. I’d experienced some vaginal discharge a few weeks before, but nothing bloody then, and it didn’t persist.
I had no symptoms that raised any red flags for me at the time. I’d gained a few pounds and had experienced lower back pain occasionally but these didn’t seem unusual to me — they’d probably been going on over the course of six to nine months, but nothing acute. I really felt fine!
Ovarian cancer wasn’t really on my radar. But it should have been; this is the part of my story that I think back on with some dismay.
I’d been treated for two breast cancers in the late 1990s, and at the time I was aware of family history on my dad’s side; since then my generation has experienced numerous cancers on both sides. When I moved to a new part of the country in 2000, I met with an oncologist to establish a contact, but never saw him as a patient.
During that time I also had a melanoma removed on my leg; it didn’t need any further treatment. I had regular annual visits with my [primary care physician] PCP, but I don’t recall a recommendation that I have a CA125 test [a test used to detect early signs of ovarian cancer in women at high risk]. I didn’t ask my PCP about ovarian cancer risk or discuss specific symptoms.
On recommendation of my gynecologic oncologist, I did have genetic testing done after finishing treatment for my ovarian cancer. It turns out I’m BRCA1 positive. Testing was mentioned to me back when I first had breast cancer 20 years ago but I hadn’t pursued it. I was worried about insurability (I had a young child) and cost issues at the time — is that nuts??
I look back now and realize that I was basically clueless (or didn’t want to acknowledge that I had increased risk) regarding ovarian cancer. Prevention was never really on my radar so I didn’t think about the possibility of having my ovaries removed as a preventive measure.
When I was diagnosed my immediate thought was I’d brought this on myself. I know, crazy — but I’d had infertility treatments in the early 1990s and thought somehow the resulting stimulation had ultimately triggered the tumors. Who really knows the cause; I can’t say I was angry, it was more disbelief and then resignation.
I was immediately thinking beyond surgery, feeling the dread of having to go through another round of chemo treatments. Seeing the tumors on my ovaries during the initial ultrasound was a shock — of course the docs couldn’t say that I had cancer without the surgical pathology, but it seemed pretty certain to everyone involved.
Fortunately, I had a great support system in the people I worked with. I could tell them what was going on and never felt any anxiety over job status/expectations (plus my boss had been through breast cancer — talk about someone who was accommodating and understanding!!).
Our son had just graduated from college and was scheduled to fly to Australia to work at a vineyard for a year. I had only a few days between diagnosis and surgery, and he was going to cancel his trip — we assured him that he could come home anytime, but urged him to stick with his plans (which he ultimately did).
Into the whirlwind
The day I called to see my PCP was a whirlwind of different docs. An internist diagnosed the source of the bleeding as probably uterine so I was sent immediately to a gynecologist. He determined that the bleeding was triggered by my ovaries, and arranged a vaginal ultrasound.
The gynecologist went with me for the ultrasound, saw tumors, and two docs conferring afterward decided that because of the size of the tumors, they needed to come out right away. They arranged for a gynecologic oncologist to see me the next day. My husband and I met with her, liked her a lot, and agreed to a hysterectomy, oophorectomy, and additional tumor debulking surgery.
Everything was happening so fast that I really didn’t think about a second opinion — the picture was pretty clear. I could see what needed to be removed and there was a standard treatment protocol that my gyn-onc went over, identifying for us variations in protocol depending on pathology. I had surgery and chemo locally, at Dartmouth-Hitchcock Medical Center (Lebanon, New Hampshire). Having easy, seamless access to care was really important, and I felt confident in the medical staff and treatment protocols available there. Plus the convenience factor was important, too.
Treatment consisted of six rounds of chemo, which averaged out to be about one every three to four weeks depending on my platelet counts. It was tougher than breast cancer treatment because infusions were longer due to the drug combos required. Side effects were more intense, but eventually were controlled by other meds.
Struggling with hair loss
I did lose my hair completely (I’d had only partial hair loss with breast cancer treatment), and struggled with the wig scene. I had worn one sporadically during my prior breast cancer chemo, but found I felt OK with just my very thin hair.
After ovarian chemo started I decided that I needed to wear a wig because I didn’t want my students to know that I was having treatments — but I couldn’t wait to get rid of that thing! I wore it from April to June and then September to December at school. The students probably knew what was going on but at least they weren’t staring at my bald head.
The toughest part: exhaustion
The toughest part was exhaustion, not hair loss. There were days when I really didn’t want to get out of bed, but I needed/wanted to go to work. I had to stay home to recover from surgery (hysterectomy) for a month. I then worked all but a few days March through June. I was lucky that during July and August I didn’t have to work, since school was out. These turned out to be the hardest months on my body because of the cumulative effects of treatment.
I started feeling OK a few months after treatment ended in August, 2009. Low blood counts and threat of infection had kept me somewhat isolated during the last two months of treatment, and I was feeling depressed about that. I actually started feeling better after school started back up, and then continued to steadily improve.
But oh, my brain… I blame my poor memory/recall of everything on chemo-brain! Physically I’m experiencing no lasting effects — mostly just normal aging.
Emotionally ovarian cancer has been a roller coaster — mainly because I sometimes find myself waiting for the other shoe to drop. It actually did one year later when my sister was diagnosed with ovarian cancer, same staging, treatment, etc. I felt gut-punched even though it wasn’t me. I’ve also had another melanoma. I’m learning to just live with this body and deal with whatever comes my way.
I had a scare from a CA125 test three years ago — it turned out to be a testing error, but I decided afterward that it was time for me to retire. I needed to have more control over how I spent my time, particularly with my extended family. These days, I’m trying to stay active and healthy — I’m eating better, and am very happy in retirement. I am also now proactive about noting changes in my body/health status that might need medical evaluation. I only wish my memory was better!
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Writer’s note: September is Ovarian Cancer Awareness Month. Its symptoms can be hard to pin down, but knowing if you’re at increased risk via family history is key to catching any cancer early. This month, make it a priority to chart your family’s cancer history, noting in particular any female relatives with breast or ovarian cancer (or male relatives with breast cancer). See a pattern? Speak to your doctor about potential genetic testing.
PJ Hamel is senior digital content editor and food writer at King Arthur Flour, and a James Beard award-winning author. A 16-year breast cancer survivor, her passion is helping women through this devastating disease. She manages a large and active online survivor support network based at her local hospital and shares her wisdom and experience with the greater community via HealthCentral.com.