Mixed messages

The rules have changed again. The American College of Physicians published new guidelines for pelvic exams. Because this issue is near and dear to me, it brings up feelings. My feelings go something like: “but how do we have any chance of detecting ovarian cancer early if there’s no annual pelvic exam?” Ovarian cancer is already the deadliest of the gyno cancers because there is no test; no screen; no imaging that can definitively identify cancerous ovaries. There are symptoms, and every time I see a PSA telling me to be aware of the 4 symptoms in order to prevent ovarian cancer, I want to scream. Partly because if you have symptoms caused by cancer, then you already have the cancer, and therefore prevention is no longer possible. Mostly because the symptoms are ridiculously ambiguous (bloating; pelvic or abdominal pain; difficulty eating or feeling full quickly; urinary symptoms (urgency or frequency)). I’m the only Stage II I know. I didn’t notice any of those symptoms. The women I met at chemo who had had symptoms were diagnosed Stage III.

My path from initial detection of a “cyst” to eventual cancer diagnosis took over a year of doing the WRAMC appointment runaround: 30-day wait for an ultrasound; a denied CT scan (after 30-day wait for appointment); another 30-day wait for another ultrasound; numerous phone calls to the OBGYN clinic for results; missed communications; a completely wrong result reported; bilateral PE; hospitalization; and then very quickly more ultrasounds, CT scans, MRI, and surgery. (phew) And I was diagnosed Stage IIc. More than one physician has pointed out that I was very lucky my Nurse Practitioner felt what she suspected was a cyst on my ovary during pelvic exam. The same pelvic exam that is no longer recommended in asymptomatic women. It at least got the ball rolling, even though that ball was rolling uphill, and then came to a stop when the same NP told me my second ultrasound was “normal,” although it turned out the radiology report included the words “concerning for malignancy; refer to GYNONC.” I was also probably lucky to have blood clots in my lungs that didn’t kill me, but did get my attention, and got me to the ER.

The American College of Physicians recommends annual pelvic exam only for high-genetic risk patients. For years, I reported my family cancer history, adding each of my Mom’s cancers as they were diagnosed. Every year I asked my GYN and my Primary Care Provider what else I should be doing in light of my extreme cancer history. “Nothing; you’re doing everything right,” was the response. It was only after my cancer diagnosis that I was offered genetic screening. Turns out I have a genetic mutation that carries an increased risk of colon and ovarian (and other) cancers. People with this mutation have an 85%* risk of developing colon cancer, with average age at diagnosis 44. Risk of developing ovarian cancer 12%.

I wasn’t treated as high-risk with my reported family history (mother with three primary cancer diagnoses; paternal grandfather cancer; 2 maternal great-aunts with cancers; paternal aunt cancer). Under the new ACP guideline, I wouldn’t have had a pelvic exam. The cyst-that-was-really-a-tumor would have gone undetected until… well, until it caused blood clots to form and travel to my lungs, which made me sick, which spurred me to go to the ER, where the ER doc puzzled over my unexplained PE… until a Med Student reported my “concerning for malignancy cyst” that he read about in my medical record at rounds, and 5 physicians rounded on me and asked why I hadn’t followed up. And that started the ball rolling again. Very quickly, and downhill.

*85% is elevated