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.

I Have Endometrial Cancer

This morning I went to work at the University of Illinois Survey Research Office, where I work part-time as a researcher. I had been anxiously awaiting the news of my endometrial biopsy results from last Tuesday. I had called this morning and left a message for my doctor’s nurse asking if the pathology report was in.

At around 9:30 this morning, just as I got a caller on the phone and was reading the spiel from our latest survey, my cell phone rang. It was my gynecologic oncologist.

The cancer club has a new member. The pathology report showed a clearly differentiated Stage 1 tumor in my uterus. If I hadn’t already been sitting down in the hallway outside the Survey Research Office, I would have collapsed.

I later asked a nurse friend what this meant. She said a clearly differentiated mass means it is a mass with its own boundaries as opposed to an undifferentiated mass that is integrated with the surrounding tissue. The type of cells they recovered from the biopsy let the pathologist know what type of tumor they are dealing with. She added clearly differentiated is always better than the other one and it is easier to surgically remove the entire growth.

As it was, my sobs were loud enough to attract the attention of several women in nearby offices. I have been prepared for this news since 2008. You are never prepared for a cancer diagnosis. My reproductive organs have turned on me and declared war. I just want them out.

I was scheduled for a follow-up appointment next week. Now I am preparing for a hysterectomy. My gynecologic oncologist said he almost called this weekend but waited until today. He asked if I was alone and I told him I was at work. I don’t imagine it gets any easier calling and telling women every day that they have cancer.

When he told me, I said I had been expecting the news. He asked why. I said women know these things. I knew something hadn’t been right in my body for a long time. I said ever since my diagnosis of complex hyperplasia without atypia in 2008 I knew I was living with a ticking time bomb inside me that was going to go off one day. When I started bleeding a year ago, I knew that was a danger sign. I said all the research I did for my article pointed to cancer.

That is one diagnosis you never want to hear, however.

The director of the Survey Research Office was wonderful. She opened her office and let me talk and later let me have a private office where I could sit and make phone calls. She also told me to go home and to take as much time off as I needed and that I would always have a job. Another woman from the office across the hall brought me a cup of water. She had been on her way to the restroom when she heard the news.

Everyone has gone out of their way today. I appreciate all the little kindnesses. However, as someone messaged me, don’t let the word cancer define you. I am still Roberta; I am not the cancer. This isn’t going to change.

Me and Martin McCormack from Switchback

Switchback

I have a consult scheduled with my gynecologic oncologist Wednesday afternoon to discuss my options. Oncologist is such an ugly word; it sounds so harsh. The word does not roll off the tongue easily. He told me to call him anytime between now and then if I have questions or if I need to talk.

I have been so busy today calling friends and family members and telling them the news I haven’t had time to process the news. There are no protocols for telling people you have cancer. I have been telling people this for some time. It is a feeling I have always had. Now I have an official diagnosis. I am from the tell it straight up school. There is no way to sugar coat the word cancer.

I need to make time for myself. I need to lose weight. I have set myself up with regular dates with a speculum. For someone who never wanted to make pelvic exams a regular part of her life, I’m making up for it now.

I will know more after Wednesday. I need to settle myself and say goodbye to my girlie parts. I will miss my uterus, my cervix, my ovaries, my fallopian tubes. They define my gender. They have served me well the past 50 years. I will miss them.
Will their loss make me less a woman?

This news couldn’t have come at a worst time. I don’t think there is a good time to hear the words, “You have cancer.” I have four articles due this week. I have told my editors, who have been very understanding and offered to help in any way they can. I have to accept the fact that my life is outside my control at the moment and trust my doctor.

No one asks to be a member of this club. It’s going to be a bumpy ride.

Your Uterus Will Thank You

When I see a fat woman, I want to grab her and shake her. Doesn’t she know that being fat puts her at risk not only for developing endometrial cancer but cancer of the breast, colon and rectum, esophagus, gallbladder, kidney, pancreas and thyroid? Fat kills.

According to the Center for Disease Control and Prevention, almost 41 million women in this country are fat. While fat people know being overweight puts them at increased risk for developing coronary heart disease, diabetes and high blood pressure, no one tells them fat causes cancer. I didn’t know this.

Adults age 20 and older with a body mass index (BMI) of 25.0 to 29.9 are overweight while those with a BMI of 30.0 and above are obese, according to guidelines established by the National Institutes of Health. To calculate your BMI, divide your weight (in kilograms) by your height (in meters) squared.

The National Heart Lung and Blood Institute has a BMI calculator. When I plugged in my numbers, my BMI was 37.1, placing me squarely in the obese category. Do I like my number? No.

When I was diagnosed with complex hyperplasia without atypia, which is a precursor to endometrial cancer, I weighed 240 pounds. I didn’t consider myself fat. I was very active. I did triathlons. I worked out in the gym. I lifted weights. I ran stairs. I did not look like a 240 pound fat woman. I knew I was overweight and could lose a few pounds but I did not consider myself morbidly obese.

The first thing my gynecologist told me was lose 20 pounds. She was the first doctor who told me being fat put me at risk for endometrial cancer. When I interviewed women for a story on endometrial cancer, they told me that not one doctor had ever told them this. Why? Doctors do women a big disservice.

Endometrial cancer is preventable; yet it is becoming increasingly more prevalent because of rising obesity rates. Fifty thousand new cases will be diagnosed in the United States this year. 50,000. More than 8,000 will die from it. 8,000. Sobering numbers.

Women have a 2.5 to 3 percent risk of developing endometrial cancer. While endometrial cancer is commonly diagnosed in post-menopausal women over age 60, physicians are seeing it in more patients in their 20s and 30s. Twenty-five percent of endometrial cancers are diagnosed in pre-menopausal women, said one gynecologist I spoke to for the story.

Women need to wake up and realize fat is not where it’s at. Making lifestyle changes – changing your diet and exercising more – has a huge impact on your health. Researchers are finding lifestyle changes decreases a woman’s risk of developing endometrial cancer. Lifestyle changes may even prevent endometrial cancer.

I am taking control. I am training for the Lincoln Presidential Half Marathon in April and plan to do several short triathlons this year. I am back in the gym. I am doing this despite the fact that my knees are shot. I have torn meniscus in both and no cartilage in one. When I run, it feels like I’m running on ground glass. I am lifting weights again.

I got lazy this winter. The cold and snow made it difficult to get out. My knees swelled and ached. I have also discovered how good it feels to move. Movement is pleasure and brings its own rewards. I am working on it. My health is more important to me than grabbing one more cookie or scarfing down a bag of chips. I don’t want to die yet.

If I do anything else with these posts, I want to raise awareness about the link between obesity and endometrial cancer. Women need to know this. It’s your body. Your uterus will thank you for it.

Talk to me.

Ectasy and Agony…Without the Ectasy

Endometrial biopsies hurt. Hurt is too mild a word to describe the exquisite cramping after having an instrument inserted inside your uterus through your cervix to take a sample of the endometrium lining to check for any uninvited cancer cells that might be hanging out and having a party without your knowledge.

I’ve never been pregnant so I’ve never had the pleasure of pushing a nine pound bowling ball out from between my legs but I’m sure that pain is nowhere comparable to that of an endometrial biopsy. If I’m wrong, please correct me.

Pity the poor man that dares complain to me about his little aches and pains and expects me to take care of him. I look him right in the eye and say don’t tell me your big toe hurts. Have you ever had an endometrial biopsy? You don’t know what pain is. You should try it sometime. Men can’t handle the level of pain women have to put up with starting with when we start our periods and cramp and bleed every month.

I swear if I believed in the Biblical story of Adam and Eve, I’d say God was playing a pretty cruel joke on women. Men don’t have to put their feet up in stirrups. Hell, a man just has to unzip and pull out his penis. I know men have to have rectal exams. Poor babies. We get it front and back.

After my gynecologist ruled out ovarian cancer – the “mass” was actually a twisted Fallopian tube – she decided to have me in for a full workup. She was very thorough and explained everything she did. I had my first date with a speculum. He was cold and aloof.

A few days later she called and said the Pap had showed some endometrial cells growing on the outside of my cervix and she wanted to schedule me for an endometrial biopsy. I’m an information gatherer. At these times, Google is not your friend.

I was well prepared when I went in for my appointment. After I stripped down, I climbed up on the table and got into position. She then wheeled a tray containing a lot of shiny sharp looking instruments over to the table.

I immediately clenched and shut my legs, or tried to. My gynecologist was in the way. She’s looking for the right speculum – I guess the first one and I didn’t work out – and telling me that it’s going to hurt a little bit. I’ll feel a slight pressure but it won’t last long. Slight pressure, my ass. Sorry wrong entry way.

By the way, she did all this without the benefit of anesthetic. I wasn’t offered the option of having a numbing agent injected inside my uterus. After she positioned the speculum, she inserted an instrument through my cervix and into my uterus to collect a sample of the endometrial lining. The cramping was literally indescribable. I kept clenching and trying to close my legs and she kept telling me to relax. Right. Relax. My uterus didn’t want anything inside it thank you very much. At one point, I asked her if she had ever had an endometrial biopsy and she said yes. I was clenching the sides of the table and had tears in my eyes.

I can handle pain but that level of pain was almost beyond endurable. On a one to ten scale, it was off the charts. Lucky me. I get to go through it all over again March 4. This time I’m getting selfies so I can share the experience with everyone.

When she finally pulled all the instruments out of my vagina, I was so ready for it to be over and done with. It really is amazing how many instruments can fit inside your vagina.

She complemented me afterwards, after I’d cleaned up and dressed, on how well I’d handled it. She said a lot of women can’t tolerate the pain. All I had to do now was wait.