Based on information provided by the National Institutes of Cancer publication on endometrial/uterine cancer, (http://www.cancer.gov/cancerinfo/doc.aspx?viewid=2c8dc4da-1a72-4e79-9a97-58b82fe64a87) the most common type of uterine cancer begins in the endometrium, or lining of the uterus. Fibroids and endometriosis are usually not associated with cancer, but hyperplasia (an increase in the number of cells lining the uterus) is considered a precancerous condition. It can develop into cancer and should be carefully monitored. If not treated, cancer cells can break away into the bloodstream or lymphatic system, spreading to distant parts of the body (metastasis). Invasive cancer cells can also spread into organs and tissue near the tumor.
Uterine sarcoma is a different type of uterine cancer. This develops in the uterine muscle. This is a much rarer form, and usually is seen after menopause.
Susan L., Michigan, USA: I was diagnosed with a rare cancer called endometrial stromal sarcoma (ESS), which makes up only one percent of all gynecologic cancers. ESS grows slowly, and can recur even after a very long period of time. It infiltrates the muscle layer of the uterus and makes the endometrium thick and "boggy," and builds polyp-type tumors. It is classified into two grades: high and low. I was very lucky to have low grade ESS, because it has an excellent prognosis. ESS is usually treated with surgery - a hysterectomy, and removal of ovaries and lymph nodes. Sometimes ESS is treated with external pelvic radiation, depending on the depth of invasion. In my case, radiation was prescribed because my stage was either 1c or 2; I had over fifty percent depth of invasion, and it was possible my cervix was somewhat involved.
Because ESS feeds on estrogen (like many breast cancers), I can't take HRT (hormone replacement therapy), and in fact, take an anti-estrogen medication to lessen the chance of recurrence. Because there is no "five year mark" for a cure, there will always be the fear of recurrence in my mind, and my health will probably be monitored by my oncologist forever.
The Cancernet section at NCI/NIH, http://www.cancer.gov/cancertopics/wyntk/uterus/page4, lists the following conditions as risk factors for endometrial/uterine cancer (Note: risk factors mean that these conditions are more common in women with endometrial cancer than in the general population):
- Post menopausal (age over 50)
- Endometrial hyperplasia (see FAQ above)
- Use of long term estrogen replacement therapy without adequate progesterone
- Overweight women tend to produce more estrogen
- Diabetes, high blood pressure
- Other cancers (colon, rectal, breast)
- Tamoxifen (breast cancer treatment)
- Race (white women more likely than black women)
These are just general risk factors, and ongoing research is trying to develop some of these theories, especially the role of excess estrogen in developing endometrial cancer. The risks and benefits of Hormone Replacement Therapy (HRT) are constantly being reviewed. There are also younger women who do not fit the categories above who develop endometrial/uterine cancer, which means that any unusual and abnormal bleeding should be immediately discussed with a medical professional.
For uterine sarcoma, therapy with high-dose x-rays (external beam radiation therapy) to the pelvis can be one risk factor for sarcoma of the uterus. Sometimes these x-rays are used to stop uterine bleeding prior to hysterectomy. Post menopausal women are at higher risk.
Georgia P., Massachusetts, USA: The signs of endometrial cancer are usually abnormal bleeding, often heavy, especially after menopause. Diagnosis is confirmed by endometrial biopsy, a procedure which removes tissue from the lining of the uterus for analysis. This is a painful procedure for many, because an instrument must be introduced into the uterus itself. However, it is quick, and done during an office visit. Doctors usually recommend taking several pain relievers (I prefer Aleve®) to help with the discomfort, and another good idea is to take a sanitary pad, since there can be bleeding after the biopsy. Once the cancer is diagnosed, staging is completed during surgery, and can be downgraded or upgraded based on the surgical results. CT scans and MRIs are also used to determine if the cancer has spread beyond the uterus, prior to surgery.
Sue D., Pennsylvania, USA: I was having what seemed like extremely irregular periods. In fact, there was no pattern to them at all. Sometimes it was just spotting, other times it was heavy. I'd have bleeding for 10 days, then none for a week, then bleeding for three days, none for a week, then spotting. When this went on for a couple of months, I made an appointment to see my gynecologist.
My gynecologist tried, but was not able to finish, an endometrial biopsy. Because my cervix had never been stretched by childbirth, she could not push the biopsy instrument through it without causing me severe discomfort. Instead she ordered a vaginal ultrasound to see how thick the walls of the endometrium and uterine walls were. During this test, a technician inserts a sonogram probe into the vagina and aims sound waves into the pelvic cavity where they bounce off the uterus and ovaries giving a "picture" of those organs.
When my endometrial lining showed up being thicker than normal, my gynecologist decided to do a dilation and curettage (D&C) with hysteroscopy. Under local anesthesia and versed (so I didn't remember the surgery), she dilated my cervix and inserted a fiber-optic scope that allowed her to see inside the uterus to check for polyps and fibroids. Then, she inserted a spoon-like tool and scraped away the lining of the uterus. The scrapings were sent to a pathologist for a diagnosis.
In the case of hyperplasia that is not malignant, a D&C can be curative as well as diagnostic. In my case, however, the diagnosis came back as grade 1 endometrial adenocarcinoma (grade 1 meaning relatively slow growing). Endometrial cancer is not staged until surgery, when the whole uterus can be examined to determine how far the cancer has invaded the uterine walls. My cancer was stage 1A, which means it was confined to the endometrium and had not yet invaded the uterine walls.
Susan L., Michigan, USA: I was diagnosed at age 48 with low grade endometrial stromal sarcoma. Cancer was not suspected at all, and I was in good health with no symptoms except those of perimenopause. The cancer was found through a uterine biopsy, and the biopsy in turn occurred because of an ultrasound for something else. The ultrasound had shown that my uterine lining was slightly thicker than normal, and so my gynecologist did the biopsy.
Renee, New Jersey, USA: In November 2003, I went for my yearly Pap smear and pelvic exam. I was having a tiny bit of watery discharge which I told my gynecologist about, but he did not think anything of it, and neither did I. I also had a transvaginal ultrasound which showed nothing. (I have a transvaginal ultrasound every year because I also have breast cancer; my gynecologist does them just to look around and make sure everything is okay.)
By January of 2004, my panties were wet and I started wearing panty liners to absorb this clear, watery discharge. I called my gynecologist and made an appointment for the beginning of the following week. During the weekend, I started to bleed. At my appointment, my gynecologist tried to tell me that maybe it was just a polyp, which is not usually cancerous, but I just had a feeling that this post-menopausal bleeding was cancer. A week later, on February 10, 2004, I had a D &C (dilation and curettage) with hysteroscopy. The pathology report came back reading: "adenocarcinoma, endometroid type, moderately differentiated, with foci of necrosis." My gynecologist recommended a total hysterectomy as soon as possible.
Mae, New York, USA: I was 39 years old and did not have children. My periods were getting longer and I was experiencing heavy bleeding. My gynecologist believed that it was normal for my periods to be seven or eight days in duration, even though I told her that this was unusual for me. She told me that the change from my normal four-day duration might be due to a recent weight gain (which was under ten pounds). After nine months of bleeding, a friend suggested that maybe I had fibroids.
Once, I was getting ready for a family get-together, and all of a sudden, I experienced extreme bleeding. I thought that I was either having a miscarriage or was hemorrhaging. It was very frightening. I went back to my gynecologist who finally ordered a pelvic ultrasound, which revealed that I did indeed have fibroids. Two months later, I had an MRI (magnetic resonance imaging scan) which confirmed the fibroids but did not indicate cancer. I was scheduled for a myomectomy (surgery to remove the fibroids).
I met with three doctors before selecting a surgeon. I had considered having a laparoscopic myomectomy until the specialist told me that my case would be challenging. I decided to go with an older surgeon who only did abdominal myomectomy. He did not believe in laparoscopic surgery because he said that abdominal surgery gives a clearer, better view of what is happening internally. During the myomectomy, the surgeon saw a milky substance and immediately sent a specimen to pathology: endometrial cancer. A complete hysterectomy was performed.
Upon waking up in recovery and being informed that I had cancer and had not undergone a myomectomy but a hysterectomy, I was shocked, to say the least. The pathology report diagnosed the cancer as stage 1 (it had not spread to other organs), grade 3 (aggressive cancer cells) endometrial adenocarcinoma.