Recurrence

Why am I an advocate for educating women about endometrial cancer?

Today I found out a friend of mine has had a recurrence. This is not the news you want to hear one week before your own endometrial cancer surgery. My heart is breaking tonight. No woman should hear she has endometrial cancer. Not once. Not twice. Not three times.

The big three – breast, cervical and ovarian – get all the news play. No one knows about endometrial cancer except those of us who are living with it now. And I am so angry she is going through this again. I am so angry I am going through it. I am so angry that any woman has to go through this.

Endometrial cancer is not the bastard cancer stepchild. It is very very real. Everyone tells me I have such a positive outlook but no one knows how many times I cry in private. If a recurrence can happen to my friend, it can happen to me, to everyone who has this damnable cancer.

I call getting cancer a blessing. And, in an odd way, it is. Whatever it takes, I will get the word out and reach out to women. Cancer is such a scary word. Having cancer scares me. There are no guarantees in this world. From the minute you are born, the warranty on your life begins to expire.

I don’t want cancer to take me out. I always imagined myself dying doing something like climbing Mt. Everest. Taking on cancer is a fight one doesn’t always win. My friend is a fighter. This is her third go round with cancer. She and I will do battle together.

So much more needs to be done. Women need to stand up, educate themselves and demand something be done. Recently, a doctor gave a talk for Girls Night Out at one of our local hospitals about cervical cancer and ovarian cancer. I wanted to go to stand up and ask why he wasn’t talking about endometrial cancer. Unfortunately, I had other commitments.

No more. I am speaking out. I am yelling out about this cancer. Women join me, join your voices, in this fight. Endometrial cancer is the most commonly diagnosed gynecological cancer. Support organizations like Peach Outreach and Womb Cancer Support UK. Talk to your gynecologist.

No one asks to get cancer. You can either bury your head in the sand or you can stand up and be counted and demand money and research and time be devoted to fighting it so another woman doesn’t have to hear this diagnosis.

I applaud the work Washington University School of Medicine and M. D. Anderson Cancer Center are doing. These institutions are doing the cutting edge research into endometrial cancer. We need answers. We need a cure.

Learn the risk factors. Learn the facts. Become accountable to your own body. We only have one body. Recognize the symptoms and seek treatment.

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

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.

If you don’t take care of yourself, who will?

Resources

http://peachoutreach.com//
http://wombcancersupportuk.wix.com/home

Join the fight.

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.