Don't Assume it's "Just Uterine Fibroids" (even if you have them)

Shortly after starting this blog, a nurse friend of mine called me up, and told me how happy she was that my doctor insisted on a biopsy, even though I was convinced that I didn't need one, because I surely " just had fibroids." She recalled a story of a friend who was diagnosed with fibroids in her early 20s. In her 30s, her cycles started to get very heavy and clotty. An ultrasound found that the fibroids grew, which was determined to be the cause of her bleeding. She was given hormones and sent on her way. For almost a decade she dealt with these symptoms, under the guise of "it's just fibroids." When she finally had enough, she went in for a hysterectomy. Her surgeon was surprised to find advanced endometrial cancer in addition to the fibroids. 

There are two morals to this story:    

1) Demand a biopsy if you have a change in pelvic pain or bleeding, even if you have fibroids. An ultrasound can not reliably detect endometrial cancer. It can show a thickened uterine lining, which can be caused by many different things (including fibroids, cancer, hyperplasia, etc). To detect cancer, you need one of two procedures: 

• An Endometrial biopsy: A simple, quick procedure that can be done in the doctor's office. A small sample of endometrial tissue is taken and looked at under a microscope. This procedure has a high success rate (around 90% or so).
• A D+C procedure (dilation and curettage). This is done under anesthesia and can be used to both diagnose and treat the cause of heavy bleeding. The lining of the uterus is scraped to reduce the size of the lining (relieving symptoms) and to evaluate the tissue. D+C procedures have an even higher accuracy, because a larger sample of tissue is taken. If I wanted to keep my uterus for fertility, my treatment would be hormone therapy to control the tumor growth and regular D+Cs to monitor the cancer.

Pap Smears are NOT a reliable test for endometrial cancer, but they can occasionally catch it. As I understand, it's pretty rare for these cancers to detect early-stage endometrial cancer, so don't assume you are cancer-free if your Pap smears have always been clean. (I have never had an abnormal Pap Smear.)

2) Don't walk away with a bottle of hormones, without knowing what's wrong with you (or having a plan to find the cause).  During her decade of obscene bleeding, my friend's friend spent a lot of time in urgicare and the ER trying to get it to stop. Most of the time, if you come to these places for heavy bleeding, they will give you medication to control your symptoms, possibly do an ultrasound to rule out fibroids or thickened uterine lining, and insist that you visit your OB/GYN to find a cause.  Her gyno already diagnosed her with fibroids and never sent her for further tests, so she was in a Catch 22.

Fran Drescher, who wrote the book Cancer Schmancer after her young and surprising diagnosis of endometrial cancer, went to 8 different doctors over 2 years before someone gave her a D+C procedure. She was a healthy weight and entering peri-menopause age, so her symptoms were passed off as "age-related changes." She mentions in the book that if she had educated herself on the proper tests/procedures to ask for, she may have received her diagnosis quicker. (Fortunately, hers was still at an early stage, because uterine cancer usually grows very slow).

Hormone pills can treat the condition, but they don't tell you what's wrong with you. Even if the hormones work, it shouldn't just be assumed that you have"just a hormone imbalance." A confirmation test should always be given and cancer or pre-cancerous conditions should ALWAYS be ruled out. Endometrial biopsies are  recommended for any woman over the age of 35 who has irregular bleeding. So speak up and ask for a biopsy, even if you don't have the typical risk factors for this cancer. It will give you peace of mind and it just may save your life.