Probably you’d like to hear some reassuring story, such as how I haven’t seen a doctor in 20 years, and ignored really obvious symptoms until they just couldn’t be ignored anymore. You know, the kind of story that lets you say, “Thank God that will never happen to me!” Sorry, can’t oblige. The truth is, I’ve gotten pelvic exams annually – the last one was in fall 2010 – and I see my primary care doc at least every six months.
This either happened incredibly quickly or, more likely, just flew under the radar. You’ll see in a moment how elusive it was.
The first symptom I had surfaced in something like January: shoulder pain. I know, I know, everyone but me experiences shoulder pain and immediately thinks “gynecological cancer”. I’m slow that way. Actually, my trainer and I spent much of the late winter and early spring trying to decipher it. It clearly wasn’t muscular – I’ve experienced rotator cuff injuries and knew it wasn’t that – and it seemed to move around a bit, first showing up under the clavicle and then farther outboard in the region of a small joint where the collarbone and shoulder blade meet, and it was tied to breathing. Very mysterious. I tried a course of anti-inflammatory doses of ibuprofen, which helped the pain while the drugs were in my system, but didn’t make it better in a permanent sense.
By February, I was also having persistent pelvic pain. It felt kind of like a combination of menstrual cramps and ovulation. Of course, the ibuprofen I was taking for the shoulder pain also took care of the pelvic pain, so it was a little hard to pinpoint when it started. I wasn’t alarmed, though, because at my exam the previous fall, the nurse-practitioner thought she felt fibroids in my uterus, a diagnosis that was confirmed by ultrasound. The ultrasound was otherwise unremarkable. (Are you paying attention?) I assumed the fibroids were causing the pain.
Mid-March, I saw my primary care doc. She sent me for chest and shoulder xrays, and referred me to the gynecologist and the orthopedist.
Mid-April, I had my appointments with those specialists. The orthopedist chalked my shoulder pain up to moderate arthritis visible on the xray. (In the end, it would turn out to be caused by a tumor on my diaphragm.) The gynecologist gave me another pelvic exam and another ultrasound, noted nothing remarkable on either (are you still paying attention?), assured me that fibroids don’t cause pain, and suggested I return to my primary care doc to have the pain assessed. (I know, I know … I’m still pondering what to do about this.)
I should note that at the beginning of April I felt well enough to consider joining the University of Chicago team for the Corporate Challenge 5K, to be held at the end of May. At the end of April, we had a delightful weekend in DC celebrating the wedding of my nephew and his bride. This included a lovely run through upper Georgetown and around Dumbarton Oaks. All with the help of ibuprofen, of course.
The earliest I could schedule an appointment with my primary care doc was May 23. (Cautionary note: I’m quite sure if I had talked directly to my doc, I could have gotten in sooner. Moral: make noise when you believe it’s important.) In that month, things deteriorated pretty quickly. The pain increased, and generalized throughout the abdomen. I felt short of breath. I had some bloating, as evidenced by tight jeans and, later, by direct measurement. (This is another plug for working with my personal trainer, who had all these measurements on file from yearly assessments.)
My doc was able to see me a few days earlier than the scheduled appointment, after I finally sent her an email with the subject, “Going from crappy to awful.” That’s when I got the first rude shock. I decided to go ibuprofen-free for the appointment, so I could accurately report my symptoms. I had NO IDEA how much pain I’d been masking with my increasing intake of analgesics. The doc walked in, took one look at my miserable face, and asked, “WHAT is going on?” All I could say was, “I don’t know, and I’m depending on you to figure it out.”
That was Thursday, May 19. And everything kicked into high gear.
Doc sent me for a CT scan the next day. She phoned me Saturday with the results: “Multiple mesenteric soft tissue implants predominately in the right hemiabdomen and also extending into the pelvis. Given the patient's age and gender, a gynecological primary malignancy considered most likely.” In layman’s terms: metastatic tumors, most likely caused by a cancer originating in the uterus or ovaries. (Regardless of where metastases are found, the tissue reflects the cells of origin, called the primary malignancy. So, for example, a colon cancer that has metastasized to the lungs will be composed of cells from the colon, and is distinct from a lung cancer that originates in lung tissue.)
Great. Did I mention that David was in California for the week? I made rhubarb compote at 3 am while trying to parse this bombshell.
The following week was dedicated to identifying the primary malignancy. (Like the two ultrasounds, the CT scan didn’t show any terribly obvious problems with my reproductive organs.) While a gynecologic cancer was most likely, colon cancer was also possible – although I had ALSO had a clean colonoscopy last fall, but at this point who’s trusting any of those tests? – as was, in my mind at least, a recurrence of the melanoma I had several years ago.
Monday, my doc sent me for blood tests and set me up to see the gynecological oncologist the following day. Tuesday morning, the blood results came back positive for gynecological cancer, but not able to specify whether uterine or ovarian. Tuesday afternoon, the oncologist did an endometrial biopsy – a biopsy of the uterine lining. Regardless of the origin, she said, I was facing immediate surgery and chemotherapy down the road.
Thursday, my surgery got scheduled for the following Tuesday. The biopsy report came back positive for endometrial cancer. But that left a remaining mystery, because these cancers don’t typically metastasize the way mine had. Could there actually be two primary cancers, endometrial AND ovarian? Or was this one cancer, endometrial in origin, presenting weirdly?
And that’s where things lay. The whole family took off for a previously scheduled Memorial Day trip to Little Compton featuring long, contemplative walks and general gratefulness for each other’s company.
In the end, the post-surgery pathology report would confirm there was just one primary malignancy, originating in the endometrial lining of the uterus. My ovaries may have looked and felt fine, but both had been invaded by tumor cells and one had been largely replaced by tumor. Sneaky little cancer!
I think the moral here is to insist on prompt and comprehensive care when things don’t feel right. To ask questions until you are satisfied with the answers. And for doctors, to be curious and inquisitive when a patient’s symptoms just don’t square with the test results, even if those tests are “the gold standard.” I don’t know that my outcome would have changed at all had this been discovered sooner – indeed, I don’t know how much earlier it was discoverable – but I do know that several opportunities were missed to do easy and definitive tests. And of course, it would help if we had a medical system in which one could routinely see a doctor in a matter of days and not weeks.
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