Written by Suzy Johnson | 16 October 2007

A few days after Christmas in 2005, my phone rang. A week earlier, at age 45, I had undergone a laparoscopic hysterectomy for what everyone thought was a fibroid. I had been feeling so good after surgery that I had already been out walking and was looking forward to an end of the constant bleeding and abdominal pain that I had been experiencing. Forgotten completely was that the "fibroid" had been sent to the pathologist for a routine screening.

I picked up the phone and was surprised to hear my gynecologist on the other end. She seemed uncomfortable and blurted out that the pathologist had found low grade uterine cancer and that they would be referring me to a gynecologic oncologist for further consultation. Her office would call me later with an appointment date. In shock, I hung up the phone.

My 18-year old cat had died about an hour earlier. She was still in the corner of the dining room where I had carefully laid her when I knew that the end was near. She needed to be buried, but I couldn't bear the thought of taking her outside in the cold.

Uterine cancer. I had uterine cancer. That's what they tell me, but I feel so good.

I woke up my husband, who sleeps during the day, and told him the news. There were tears shed, and a resolve to face the cancer head-on.

So I turned to the best source of information that I felt I had: the Internet. What I found there was that low-grade uterine cancer had a very good prognosis and that there were promising new hormone treatments. I felt relieved and confident that everything was going to be fine.

A week later, while waiting for my first CT scan, I noticed on my chart the words, "Endometrial Stromal Sarcoma." My heart dropped. My doctor had told me uterine cancer, not uterine sarcoma. It must be a mistake, I thought.

Finally the time came for my first appointment with the gynecologic oncologist. It seemed silly, but I asked him what my diagnosis was. He looked up from his desk with a surprised look on his face and said "Endometrial Stromal Sarcoma." Once again I was thrown into turmoil. It wasn't a mistake after all, and my Internet research had told me that the prognosis for ESS was very different than uterine carcinoma.

I became an expert on Google searches for ESS. A 50% five-year survival rate for Stage I seemed to be spread across the 'net. Since I did not know what stage I was at that point, I didn't want to look at the survival rate for the stages past that.

But early in my Google searches I found the Yahoo ESS group. They welcomed me warmly, and explained that the research on the Internet did not represent what is really happening with uterine sarcomas right now. ESS is actually very survivable they said.

I am still disease-free over four years later, with my only treatment being Femara. I am thankful every day for this inspiring group of ladies (and husbands) who participate in the Yahoo group. They are calmness in the storm; a candle burning in the gloom. And most of all, they know what is really happening, not what the research on the Internet says.

It was this group of special ladies who inspired me to start this website. The Yahoo group is wonderful, and I highly recommend it to anyone with this diagnosis. I just felt that we needed to organize our information a little better, and a website would be a good solution. A kind of life raft in a sea of misinformation.

So please enjoy our website, and join the Yahoo group. And remember not to believe everything that you read on the Internet. There is hope, and we are here.