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My Story | Susan L., Michigan, USA

Endometrial stromal sarcoma (ESS), stage 1c, January 2002 at 48
Total abdominal hysterectomy, bilateral salpingo-oophorectomy, lymphadenectomy, pelvic radiation

My story began in February 2000. I had some light spotting after sex, then after my periods. So I went to my gynecologist. She did an exam and found a polyp on my cervix. She told me polyps are very common; she removes many of them. So she removed it. It was biopsied. It was benign. Just a polyp. The spotting stopped.

Everything was normal. Then that August, the same scenario started. I recognized the pattern and called my gyn's office. She was on vacation. Her secretary told me I could live with it until the doctor's return in four weeks. I said, "No, I couldn't, and could I please see one of her associates?" She told me, "No, we don't allow 'doctor-hopping'"

This upset me. I had been seeing this doctor for sixteen years. I decided I would 'doctor-hop' all right - right out of her office. So I called my nurse practitioner and had her take a look. Yes, I had a polyp. She referred me to another gyn. He removed it and had it biopsied. Just a polyp. "Why am I getting these?" I asked. He said, "It just happens." So in the year 2000, I had three Pap smears and two polyps removed. I felt pretty safe.

In February 2001, I had periods within two weeks of each other. The second one was rather light. Weird, though. Since I was "Between Doctors," I waited. Two weeks later, another period. I waited. Four weeks - another normal period - although the spotting before and after seemed longer. This pattern continued. Some months normal, some not. I called a top gyn and couldn't get in to see her. I was put on a waiting list. No big deal. I had three good Pap smears, remember?

By summer, my periods seemed rather normal, but I had extended spotting. I was thinking something seemed wrong. But I was perimenopausal with occasional hot flashes and knew my Paps were good.

By August, I recognized the symptoms of yet another polyp. I was so busy that I figured by the end of soccer season, I would call and get it removed. About the end of soccer season, I had the strangest period ever. I stood up one day and blood just gushed. I still figured it was perimenopause, but the period just didn't end. So I called my nurse practitioner. She looked and said, "Yes, it's another polyp. But this one is quite big." So she suggested an ultrasound to see if I had any more polyps in my uterus. She called and arranged an appointment with the "really good" gyn whose waiting list I was on.

I had to wait a month to see the new doctor. In the meantime, I had the ultrasound. It frightened me because I watched the screen and noticed my left ovary was twice the size of my right. It had been aching. Now I was getting worried.

When I saw the new doctor, she told me most likely the removal of the polyp would end the bleeding. It looked benign. She mentioned the ovary and said we'd keep an eye on it with another ultrasound in a month. It was a simple cyst, but not a good thing for someone my age. We may need to remove it. She also mentioned that the lining of my uterus was somewhat thick. Nothing real out of the ordinary limits, but it should be biopsied. So she did a uterine biopsy. She said she would call in a week with results.

The week went by with no call. I figured no news is good news. Then another week went by I figured maybe they just don't call if there is no problem, and I wasn't too worried. Then one night I was picking up my daughter from volleyball practice. When I came home, my husband told me my doctor had called and was going to call back.

Oh my! - I felt a tightening of nerves. I knew then that the news probably wasn't good. Good news would not warrant a phone call at 7:00 at night. I received the phone call: Low Grade Endometrial Stromal Sarcoma, a rare, slow-growing cancer. It was found in the polyp and in my uterine biopsy. This one phone call turned my entire life upside down. How long had it been there? She said I needed a complete hysterectomy, tubes, ovaries, cervix, lymph nodes.

She insisted I see an oncologist and I did. He said he should do the surgery because an oncologist can do the lymph node sampling. So a week later I had the surgery. I was so upset during that week. Scared. I had to put things in order to take time off of work. Tell my family. Adjust (hah!) to the cancer diagnosis.

My oncologist told me that, most likely, surgery would be the total cure unless the pathology report warranted further treatment. Since this cancer grows so slowly, it doesn't respond to chemo. Radiation would be a possibility. So would treatment with the drug tamoxifen, since the tumor was estrogen receptor-positive.

So I had the surgery. I don't need to tell you how frightened I was, as you can imagine. I also felt angry that my "happy little life" now had this huge barrier in it. Cancer? Me? Why me? Why not any of the other people walking around in this world? Wow. I just lay in bed in the hospital. I didn't read or watch TV or anything. It hurt. It hurt mentally, too. How could this be happening?

My doctor's office called with the pathology results. The tumor had infiltrated the lining of my uterus more that halfway. Stage 1c. Although the lymph nodes were clear, the infiltration was a prognostic indicator of possible recurrence. So, external radiation was strongly suggested. My doctor came to see me that afternoon and talked with me about it. He also told me to take the tamoxifen. There would be no HRT (hormone replacement therapy) because of the estrogen receptors. The hot flashes could be helped possibly with 800 IU of vitamin E a day. Otherwise, there was a high blood pressure medication that some women have success with in controlling their hot flashes.

They sent me home. The hot flashes and premenstrual-like mood swings began in earnest. I was miserable, depressed, upset. I couldn't function. So I called the doctor's office to ask for an antidepressant. They gave me Paxil®. I was nauseous and slept sixteen hours a day, so I stopped taking it. The mood swings came back. I called again and was prescribed Celexa™. It's a great help. The hot flashes are still a major part of my day and the tamoxifen makes them worse. I won't take the blood pressure medication because it makes you tired. Not something I need. I'm trying a B-complex vitamin and it seems to be helping. With this estrogen receptor problem, natural estrogens are also not something I can use. No black cohosh, soy or yam for me.

Radiation began the same day I went to a cancer center for a second opinion. The doctor there felt radiation was a good option. She didn't agree with tamoxifen. She feels Megace® (a progestin) is a better medication. Since the doctors disagree, I am still researching this. Tamoxifen has good things for me and will help prevent osteoporosis. Since estrogen prevents osteoporosis and is not available to me and since I have early osteoporosis, this is a worry to me. So I want to continue with a SERM (Selective Estrogen Receptor Modulator) like tamoxifen.

The radiation was tough. Everyday a round trip of 50 miles. After a few weeks the diarrhea began. It got worse and worse. I felt nauseous, I had some skin burning, and the fatigue was very strong. After three weeks of external radiation, I came home and slept all afternoon, then went to bed early. I saw the radiation oncologist every Wednesday. He wasn't very good at communicating. He didn't help me with any medication.

After twenty-five treatments in five weeks, the radiation was over. I was so relieved. The journey was at an end. I cried. It was so hard for me mentally to drive there every day. Not only did the drive emphasize the fact that I had cancer, it was making me sick.

A few weeks later I saw my oncologist. He was surprised I wasn't given a prescription for the diarrhea. I had lost ten pounds during radiation. He gave me Lomotil® and it worked immediately. I wish I had known to ask for it before. What a difference. I started feeling much better since I could keep food in me. Nutrition is so important in recovery.

So now I guess I'm disease-free. I had twice the radiation needed to kill microscopic cells. I'm taking tamoxifen. I'm back to my usual exercise routine. As for diet, I'm working on trying not to lose any more weight and eating healthy. The radiation side effects are still there. It's been three weeks now since I ended those treatments. I have a burn that still hurts, my bowels are not normal, my bladder capacity is small and urgent. The scar is long and red - extending above my navel from the aortic lymph node removal. My oncologist told me he isn't into "cosmetics" and didn't want to puncture my I have this extra-long scar. I am still fatigued, which I was told could last a few months. Every three months I'll see the oncologist and we'll watch. This cancer is low-grade. It has an indolent course. It likes to return and can, up to twenty years from now. But if it does return, it's highly treatable. I should think I'm lucky, luckier than many of the people I met at the radiation treatments.

I don't know if I'll ever be able to shake off the fright and surreal quality of this winter. After all, I spent three months doing nothing but fighting cancer. I have high hopes that the battle is over. Lucky??? I don't know, but I'm alive with a good prognosis - and glad for that.

My hope in posting this story is that someone sometime may need to talk about ESS. There is very little information available on this rare cancer. I couldn't find much to help me. I am here and willing to communicate with anyone going through this, and hope they will contact me at I'll help all I can.

May 2002

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