The details of my diagnosis...a cautionary tale

Warning: I'm going to discuss some of the graphic details of how I came to be diagnosed with endometrial cancer. If you're a premenopausal woman, I especially encourage you to read this entry. If you get squeamish with discussions of menstrual cycles and women's reproductive anatomy, perhaps you should skip this one.


For at least a year before my initial diagnosis, I had symptoms of endometrial cancer. No, I didn't ignore them. The symptoms were simply the same any perimenopausal woman could have, periods of extreme heavy menstrual bleeding. We're talking a day so heavy each period that I'd have to change super plus tampons and heavy flow overnight-sized pads -- yes I was using them both at the same time -- every 45 minutes to an hour. Most days like that I wouldn't leave the house if I could manage it.

In November 2011, I talked to my gynecologist about the heavy bleeding, which he agreed was a classic perimenopausal symptom. We talked about possible treatments to ease or get rid of the heavy bleeding so I wouldn't feel captive in my own home once a month. He gave me some literature to take home and consider my options.

Four months later, I return for a consult to get the process underway for a uterine ablation, a treatment that involves basically cauterizing the blood vessels of the endometrium, either with laser or hot water. Fifty-percent of women receiving this procedure never have menstrual bleeding again. Most of the remaining fifty percent have very light bleeding until menopause takes over. Sounded good to me.

My gynecologist wanted to schedule me for a hysterosonogram before performing the ablation so that he could get a good look at the anatomy of the inside of my uterus. During a hysterosonogram, the cervix is dilated to allow passage of a small catheter into the uterus, while ultrasound is used to guide the catheter and record the results. Once the catheter is correctly positioned, the doctor injects through it a saline solution that inflates the uterus and allows its internal anatomy to be seen.

Immediately, my gynecologist saw something suspicious, a 5-cm long ribbon-like tumor growing out of the lower part of my endometrium, the inner lining of the uterus. On the spot, he decided to take a biopsy of the growth to send out for pathological study.

The pathology report took a week to come back, and it indicated the tissue examined had hyperplasia with atypia, basically cell overgrowth with suspicious looking cell nuclei. The report also ominously said it could not rule out malignancy. So, the pathologist couldn't say it was cancer...but he couldn't say it wasn't either. My gynecologist immediately refers me to a gynecological oncologist, and I am fast on my path to becoming an official cancer patient.

Forty-seven year-old women aren't supposed to get endometrial cancer, much less stage IV. Though endometrial cancer is the third most diagnosed cancer in women, it's largely considered a curable cancer because it mostly presents in its early stages in post menopausal women, in whom vaginal bleeding is obviously abnormal and in whom surgery possibly combined with pelvic radiation results in a cure.

This wasn't the case for me. In retrospect, I was probably already in stage IV when my gynecologist first found the tumor inside my uterus. No one can say how long that tumor had been growing there, its symptoms being masked by my monthly menstrual cycles.

I've since discovered that I had several risk factors for endometrial cancer, factors I'd never heard about or was not warned of within the context of cancer development.

1. I was overweight. Fat cells act as extra storage tanks for estrogen, and endometrial cancer is quite frequently associated with elevated levels of estrogen. Testing on my tumors reveal that they are both estrogen- and progesterone-receptor positive. The estrogen in my fat cells fed my cancer. I've read research that shows being overweight makes women ten times more likely to develop endometrial cancer.

2. I had polycystic ovarian syndrome. This caused me to have highly irregular menstrual cycles with long periods of unopposed estrogen. As discussed above, too much estrogen feeds tumors.

3. I started having menstrual periods before the age of 12. Again, it's that increased exposure to estrogen that's the culprit.

Other risk factors that I didn't have but are important to know about include:

1. Never having been pregnant.

2. Never having taken birth control pills.

3. Having taken Tamoxifen for the treatment of breast cancer.

Finding published research about the treatment of stage IV endometrial cancer is very difficult. There are two reasons that I've come across. Primarily, most women are diagnosed in stage I or stage II and are essentially cured by their treatment. Second, women with stage IV endometrial cancer aren't typically around very long after being diagnosed, so it seems rather difficult to get them enrolled in clinical trials long enough to collect much helpful data. Sigh.

My hope is that since I'm much younger than the average woman with endometrial cancer and since I have no other health issues that I'll be the statistical outlier. That's how I'm focusing my energy.

So, dear readers, I encourage all of you premenopausal (and especially perimenopausal) women who have an increased menstrual flow and who meet some of the risk factors listed above to insist your gynecologist investigates further. A hysterosonogram is not a big deal...and who knows how different my prognosis might be today if I had known to ask for one a year earlier.