ess-sarcoma.com is a site for survivors and their loved ones

Susan's Story

There are dates in one’s life that will always be familiar. A wedding day, the birth of a child, the death of a loved one, and for a cancer survivor, the day of diagnosis. January 19, 2002. This day will always be the day that I know that my life changed. My gynecologist waited until Monday to call with the news of a malignancy. She said she wanted me to have a nice weekend. I wish I could have that weekend back. To savor life without cancer tainting my security. Everyday life, which has its ups and downs. The busy, sometimes frantic schedule with a job, and a husband and three children. There were so many sports events that autumn, and so I waited until my son’s soccer season was over to check on the symptoms of another cervical polyp. Two had been removed within the past 18 months, and there had been three clear pap smears. So the spotting was annoying, yet the shorter amount of time between periods and the extended spotting certainly could be explained away by perimenopause. I wasn’t very concerned.

When I had gone to have the latest polyp removed, my nurse practitioner had also ordered an ultrasound. The findings, a thickened uterine lining, and a fibroid, were not worrisome to my gynecologist or me. Yet she did a uterine biopsy just to be safe. She wrote in her report “probably benign”.

The phone call that Monday evening began my journey. Cancer. A frightening word. The biopsy showed Endometrial Stromal Sarcoma, low grade. I hung up the phone and now as I look back on that evening, I know what it means when someone says, “I was in a daze.” Denying to myself that this was true, I told my husband that it was possible. That it would probably be ruled out when the oncologist viewed my slides. Concerned as my husband was, he didn’t believe it either. I told no one. I hung onto the phrase my gynecologist used…. “Contained possibility”. A careful possibility. Maybe…. The following week was a series of appointments that only added to my fright, along with setting things in order to take 6 weeks off from work for recovery time due to the scheduled hysterectomy.

Until I was wheeled into the operating room, I waited for someone to come to me and say it was a mistake. I waited for the path report after surgery to say it was a mistake. I waited for the Dr to come and tell me it was nothing. This didn’t happen, and I had to come to grips with the fact that this was indeed cancer, and that I was strongly encouraged to have pelvic radiation as “insurance”.

No one ever thinks they will have to drive to the CANCER institute, and park the car and walk in every day to have treatment. It still feels to me that someone else did this. Someone else lay on that table and heard the machine whir. Someone else ran in the other direction every time that nice chaplain tried to talk to her. Someone else went home and couldn’t read, or watch a movie, or sleep, or eat. But that someone was me.

I met a Dr in a class that I took later that spring, and he asked me, “How does a cancer patient get thru this? What is it that helps one continue?” And I told him of the women I met on the Internet that had this same rare cancer. That’s why I “continued”.

What would you do if you had a cancer that most Drs have never seen, and some have never heard of? You would want to know more about what you’re dealing with. The Internet is right there on your computer. Type “Endometrial Stromal Sarcoma” into a search engine. You’ll find a bit of information. One site may be interpreted as “you’re going to die!!!” Another site may say “100% survival at 5 years”. Another may say, “no big deal, it’s almost benign”. You will also find “50% recurrence rate”. Now whom could you believe? Try a cancer site. No information. In my quest for information, I found a hysterectomy site with one posting about ESS. A lady named Bea. I wrote to her. She wrote back. I cried. Someone was there. Someone had heard of this. Someone else was traveling on this path.

We wrote back and forth the week before my surgery and have since become fast friends, although we have never met face to face. It is entirely odd to find that you are in your light blue terry cloth bathrobe typing to a lady you’ve never met, and she also is in her light blue terry cloth bathrobe. Our children are close to the same age. Our sons drive identical cars. Our parents are in Florida. It seemed we had more in common than not.

In the meantime, I found a misspelled site through a rare diseases page. I wrote a desperate frightened letter and a lady from New Zealand wrote back, and a lady from Great Britain. Always in my mind, and heart, I will remember these women reaching out to help me, and reassure me. “It will be okay, you can do it”. They also are my friends. I fantasize about meeting them someday. They are strong, caring, witty women who reach out to help others.

Between these ladies and I, we decided to spell the title of the site correctly and collect all the people we knew with ESS to join this group. The group expanded to 12 members and were awed that there were so many of us. Yet now, unbelievably we have over 70 members from all over the world.

Imagine yourself seeing a gynecological oncologist. How many patients does he have? Don’t you think he would be more apt to study ovarian or cervical cancer before spending great amounts of time researching ESS? Where would he find the information? In the books he has on his shelf? Discussing the disease with other Doctors?

Through our on-line support and discussion group, we share the information we glean from our physicians, from medical textbooks, other cancer groups, medical abstracts and internet lists. Together we support and inform one another. We had a 90-minute internet/telephone conference with an oncologist at MD Anderson who donated her time to us. Rosi the Brit, stayed up until 2 am to make her long distance call to the US to participate in this conference. We heard each other’s voices that night. It wasn’t a surprise to hear anyone. The personality from their messages on the screen came through in their voices.

We also have a pathologist kind enough to help us when needed. One woman alone could not have this kind of strength and backing from the medical community, but together we are able to amass a great amount of information to fight this monster to the best of our combined abilities.

Yes, my life changed the night of that phone call. Never would I say that cancer was a good thing. I feel that monster breathing down my neck. Not a day goes by without some reminder, some musing, some panic, or some sadness. Yet from bad things can come good. That is what our ESS group is. The good that came from bad. As Bea would say, this is a mitzvah, our good deed. No woman should be alone and afraid when diagnosed with a cancer that is .02% of all gynecological cancers. We’re here and we’re here in force. We can fight with the best of them.

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