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My Story | Suzie S., Florida, USA

Vaginal leiomyosarcoma, diagnosed 2002 at 42
Hysterectomy, pelvic radiation
Metastasis to right lung, 2003
Chemotherapy
Metastasis to left lung, 2005
Surgery

 

I live in Tampa, Florida.

I get angry that treatment guidelines and Web sites often ignore women who have rare cancers.

Although women with gynecologic sarcomas may have some of the same symptoms and issues as women with carcinomas, our treatment often differs.

Many of us have horror stories about being misdiagnosed or getting the wrong treatment from a general practitioner, internist, gynecologist or gynecologic oncologist.

Many sites, such as the National Cancer Institute (NCI), act as if uterine sarcomas are different from all other soft-tissue sarcomas.

The sarcoma advocates I know recommend that everyone with sarcoma consult with a doctor in a sarcoma program, or one who sees at least 100 cases of sarcoma a year.

If you have sarcoma, you can search the Web for sites such as www.sarcomaalliance.org or www.leiomyosarcoma.info

In the fall of 2001, a physician's assistant (P.A.) in a gyn office told me I had a small vaginal cyst. I had an ultrasound and the P.A. confirmed it was benign. I saw her again early in 2002, and she told me once again that it was benign and didn't need to be removed.

In May 2002, when I was 42, I was bleeding between periods and had a foul-smelling discharge. I went to a gynecologist early in June, and she told me that she was sure I had cancer. But I was in-between insurance, and my new insurance wouldn't start until July 1.

She told me that I could wait, even though I came back in a couple of weeks because the tumor was growing rapidly and bleeding badly. It grew so large that it would stick outside of my body and I would have to poke it back inside.

Finally, July 1 came, and she did a biopsy in her office. The tumor was bleeding so badly that she said she hoped she could do a successful biopsy, without causing hemorrhaging that would require that I go to a hospital. It was frightening to hear that, but I still trusted her.

A week later, the local hospital came back with a diagnosis of carcinosarcoma.

My gynecologist recommended I see a gynecologic oncologist. No one told me that sarcoma programs existed.

I saw the gyn onc, and he scheduled surgery in a week. He removed my uterus, ovaries and most of my vagina. Two pathology tests at bigger hospitals confirmed I had vaginal leiomyosarcoma (LMS.)

I had 30 days of pelvic radiation, and my bowels are still irritable from it. Only recently did I stop bleeding whenever I had a bowel movement.

The radiation oncologist told me that I had to use a dilator for a year. But my vagina continued to shrink because of the radiation, and it now is only as big as my smallest finger. My current gyn onc says I will need to use a dilator every few days for the rest of my life.

Although my first gyn onc was great, he had to cut my vagina away from my bladder, and that caused bladder damage. I had to use a Foley catheter for four months. Then I switched to self-catheterizing about five times a day. My bladder has made a great recovery, and I now have to catheterize only once a day.

It is recommended that people with LMS get chest, abdomen, and pelvic scans every three months for the first two years, and longer, if the cancer comes back.

My scans in January 2003 found a metastasis in my right lung. I had chemo (Gemzar and Taxotere) off and on for the rest of the year, until the met had disappeared. I was lucky because chemo often doesn't work on sarcomas.

In July 2005, another met showed up in my right lung. This time I had surgery to remove it.

Now I have a nodule in my thyroid. My sarcoma doctor is waiting to see if it begins to look like cancer or not.

When sarcoma spreads to a distant location, such as a lung, a person is considered incurable. If only the physician's assistant had suggested I get the "cyst" removed or my gynecologist had removed my tiny tumor when she saw it, I might have had a chance for a long life. Now, the best I can do is warn others.

June 2006

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