I Am A Statistic

I am sitting in my bathroom reading “Why I Wore Lipstick to My Mastectomy” by Geralyn Lucas when I start crying. I lean my head against the cool plaster wall and sob. It has been slightly over a week since I was officially diagnosed with endometrial cancer and this is only the second time I have cried.

I wipe and see blood. The blood is a reminder of the tumor growing inside my uterus. It is a reminder of all I am about to lose. When I was young, I wanted to have 18 children, enough to form two baseball teams. Now it is too late.

I am crying for the children that I never had. I am crying for the more than 8,000 women who will die from endometrial cancer this year. I am crying for the 50,000 women who will be newly diagnosed with endometrial cancer this year. I am crying for those who have already lost their lives to endometrial cancer.

When the realization hits me…I have become a 2014 statistic. I am one of the 50,000. I have endometrial cancer. Forty-nine thousand other women will hear that diagnosis this year and that is one too many.

When I was 12 or 13, I looked forward to getting my first period. I would check my panties several times a day looking for the telltale signs that I had started. Now I dread seeing blood.

There are times when I pound my pelvic area with my fist and yell “I hate you.” And there are days when I miss my uterus. To tell the truth, until I was diagnosed with cancer, I never thought about my uterus. Now it is constantly on my mind.

One day a young woman who lives in my building struck up a conversation with me. She asked what I did for a living. I told her I was a freelance writer and she asked what I was working on. I told her I was writing a story about endometrial cancer. She stared at me and asked what that was. I said uterine cancer. She then asked me what a uterus was.

Centers for Disease Control and Prevention

I just stared at her. How could she not know what a uterus was? I asked her if she had ever been to a gynecologist. She had, several times. I asked her if her gynecologist had ever explained this to her. She said she knew what the word was but she couldn’t visualize it because she couldn’t see it, couldn’t touch it. I had to show her where her uterus was located.

I knew I was in trouble when I had to explain menstruation to her. When I told her the ovaries produced eggs, she just laughed at me. She asked me what eggs were. She said all she could envision were chicken eggs. All I could do was shake my head. I did not even try to explain endometrial cancer to her.

The following information comes from the National Cancer Institute website, which has an excellent online booklet titled “What You Need To Know About Cancer of the Uterus.” For more information, visit their website at: http://www.cancer.gov/cancertopics/wyntk/uterus.

Endometrial Cancer

The uterus is a hollow, pear-shaped organ located in the pelvis. It has two layers of tissue: the inner layer, which is called the endometrium, and the outer layer, which is called the myometrium. Most endometrial cancers form in the endometrium and are the most commonly diagnosed gynecological cancers. The most common endometrial cancers are adenocarcinomas, which begin in the cells that make and release mucus and other fluids. Cells are the building blocks that make up tissues. When normal cells die, new cells take their place. Sometimes this process goes wrong and cells don’t die like they should. The buildup of extra cells often becomes a mass of tissue called a tumor.

Endometrium

Endometrial Adenocarcinoma

Risk Factors

The following risk factors predispose women to developing endometrial cancer:

Endometrial hyperplasia
Obesity
Never having children
Early onset of menstruation before age 12
Delayed onset of menopause after age 55
Taking tamoxifen
Taking estrogen without progesterone
Radiation therapy to the pelvis
Family history
Lynch syndrome

Not all women with these risk factors will develop endometrial cancer. Some women who are diagnosed with endometrial cancer will not have any of these risk factors.

Symptoms

Abnormal vaginal bleeding, spotting or discharge
Pain or difficulty when urinating
Pain during sexual intercourse
Pain in the pelvic area

If you experience any of these symptoms, tell your doctor immediately.

Doctors don’t know why some women develop endometrial cancer and others don’t. There is still more research that needs done. The Siteman Cancer Center and Washington University School of Medicine in St. Louis and M. D. Anderson Cancer Center in Houston received Specialized Program of Research Excellence (SPORE) grants from the National Cancer Institute to study endometrial cancer. To learn more, go to http://www.siteman.wustl.edu/ContentPage.aspx?id=5485 or http://www.mdanderson.org/education-and-research/research-at-md-anderson/early-detection-and-treatment/research-programs/spores/uterine-cancer-spore/research/index.html.

I did not want to be a member of the cancer club but in some ways having cancer is a gift. I am coming to believe that things do happen for a reason. Women are starting to have a long-overdue conversation about endometrial cancer.

Marcy Kurtz is the founder and director of Peach Outreach, a 501(c)(3) corporation committed to raising awareness about endometrial cancer and other gynecological cancers and funds to support research and education to advance early diagnosis, treatment and the quality of life of endometrial cancer and other gynecological cancer patients, survivors and their families. Peach is the new pink. Visit their website at http://peachoutreach.com/ to learn more.

There are only so many colors that can be turned into ribbons. There are only so many months that can be designated cancer awareness months.

In less than a month, I am having a hysterectomy. I see the tumor as a metaphor for the child I never had. I would like some small reminder to remember my uterus by. Perhaps after my surgery and my recovery, I will get a tattoo to remind myself of not what I have lost but what I have learned along the journey.

Three Days

Today is March 1 and central Illinois, where I live, is expecting up to 10 inches of snow this weekend. The weather is as tempestuous as my mood has been the past few weeks. I have been lashing out at everyone around me at the slightest provocation. One minute I’m feeling great; the next I am curled up in bed clutching my much-loved teddy bear and fighting back tears. My life feels as though I’ve hit the pause button.

In three days, I am having an endometrial biopsy. To say I am scared is putting it mildly. Terrified would probably be the more correct term to use. This is not my first one. This time around I am presenting with a very scary symptom – abnormal uterine bleeding. If there is one thing women take away from this, if you experience abnormal uterine bleeding, get it checked out. Don’t wait.

I went through menopause in 2005 or 2006 and have not had a period since that time. However, last year I started spotting. At first, it was irregular and I passed it off as nothing to worry about. It gradually got heavier to the point I had to start buying sanitary napkins. I felt like a teenage going through her first menses again. The occasional bleeds turned into six times a month bleeds, accompanied by hard cramps. I just finished a week-long bout of spotting with cramps.

I’m not stupid. I knew something was wrong. After menopause, a woman should not experience uterine bleeding. In 2008, I had had a D & C, which is also referred to as a dilation and curettage. It was an outpatient procedure performed under general anesthetic. My gynecologist went in and used a curette to scrape the inner lining of my uterus to collect samples for examination. I was diagnosed with complex hyperplasia without atypia, which has a three percent risk of developing into full-blown endometrial cancer.

Hyperplasia occurs when the lining of the uterus thickens, which is usually caused by excess estrogen production without progesterone. During your normal menstrual cycle, there is a balance between estrogen and progesterone and you shed your uterine lining each month. When a woman is fat, the excess fat stimulates the body to produce estrogen. After a woman goes through menopause, your body no longer produces progesterone. However, in fat women, your body continues to produce estrogen. Without progesterone, the uterine lining, or endometrium, continues to grow and thicken and the cells can become abnormal.

My gynecologist said the D & C results showed pre-cancerous cellular changes in the lining of my uterus, which would develop into cancer at some point. At that time, I wanted to have a hysterectomy, which my gynecologist didn’t want to do. I was past my child-bearing years so losing my girly parts wouldn’t have bothered me. However, she said because I had never had children, I was very tight and it would have made it harder to do a vaginal hysterectomy.

She started me on standard treatment protocol – oral progesterone therapy. I couldn’t handle it. It was like having a period 24/7. I experienced tremendous mood swings, cramping, constant bleeding, and food cravings. When I contacted my gynecologist, I found out she had left the practice. I weaned myself off the meds and never went back to the doctor. By that time, I had lost my health insurance and couldn’t afford follow-up treatment.

Flash forward to today. I still don’t have health insurance. I am a freelance writer who barely earns enough to survive month to month sometimes. It was only through sheer luck I found the gynecologic oncologist I am seeing Tuesday. I interviewed him for my story on endometrial cancer for spryliving.com.

I have been living with a ticking time bomb inside me since 2008. Tuesday I find out whether or not it has gone off. I have not felt right for a long time and somehow have always known at some point I would face a cancer diagnosis and had long ago accepted I couldn’t afford to do anything about it without insurance. I still don’t know what I’m going to do.

When I spoke with my new gynecologic oncologist on the phone, I told him about me. After I described my symptoms, he got very quiet. He said complex hyperplasia without atypia had a three percent risk of developing into cancer. I then told him about my abnormal uterine bleeding and that I would bleed up to six times a month. At that point, he told me to make an appointment with him.

Yes, I’m terrified. I know my body. I’ve known for the longest time that something wasn’t right. There are times I wish I was stupid. There are days I wish I didn’t have the knowledge that I have stuffed in my brain. I am scared to death that I’ll hear the word cancer even though I’ve been expecting that diagnosis for a long time. Expecting it and hearing it are two different things. What scares me even more is that I’ve found a lump on the left side of my abdomen. It has been there for several months. What if I have cancer and it has already spread? What if it’s already too late?

I will begin the journey to finding out Tuesday.