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My Story | Nellie N., Massachusetts, USA

Renal cell carcinoma, 1995
Vaginal leiomyosarcoma, 1999 at 36
Recurrences to lungs and vaginal wall
Hysterectomy, radical cystectomy, radiation

I'm Winning!

My name is Nellie and I just celebrated my 40th birthday. This day was made especially wonderful because my husband and children put together a surprise birthday party for me at one of my favorite restaurants.

In order for you to understand why this birthday was so extra special, I have to go back a couple of years.

In March of 1999, I was on top of the world. We had just finished building our home, our eight-year-old son and four-year-old daughter were happily settled in our new neighborhood, and I had a great job teaching at an elementary school. Little did I know that within a few weeks, our whole world would change.

My symptoms began with some pretty bad pain after voiding. Thinking I must have a urinary tract infection, I called my physician for an antibiotic. My description of the symptoms led the doctor to suspect the same thing. After a few days on antibiotics, I called his office to let him know I was feeling worse. They asked me to come in for an examination.

Concerned because of my past history with low-grade renal cell carcinoma resulting in the removal of my left kidney, the doctor decided to do a ct (computed tomography) scan that same day. I went home thinking everything would be fine because when they removed my kidney, the doctors told me they had removed all the cancer.

A couple of days after the scan, the doctor called and asked if I could come in to see him. Even then I wasn't worried, so I decided to go alone. He told me that I had a tumor between my vaginal wall and my bladder, and that I needed to have surgery to remove it. I started to worry.

I had surgery in April and got the worst possible news. What I had was cancer, but they couldn't determine what kind without further testing. The final pathology report indicated a new primary cancer, leiomyosarcoma of the vagina. A few days later, I started radiation to my vaginal area and that's when things really started to get to me. I was very uncomfortable, the radiation burned me pretty badly, and I had to make a two-hour round trip for treatment every day for seven weeks. Thank God for my wonderful family and friends. Someone was there to drive me every day and to push me when I didn't think I could do it anymore.

After finishing radiation, all seemed to be going OK. I was healing pretty well, and, although I did have some uncomfortable side effects from the radiation, they were getting better.

At the beginning of 2000, I went back for my three-month scans and got a call the next day from my oncologist's office telling me she would like to see me as soon as possible. I couldn't believe it! All I could think of was, "Here I go again." I asked to talk to the doctor because I didn't want to wait another day or drive another hour to hear bad news. I wanted to be at home near my family. My oncologist proved to be one of the most understanding people I have met through all of this. I love her! As I requested, she told me over the phone that the cancer had metastasized to my lungs, and that she had set up an appointment for me to see a thoracic surgeon the following week.

All I could think about was my kids. They were so little and scared. Hadn't they been through enough? Our approach had always been to be honest with them, explaining as much as we thought was appropriate for their ages. We didn't want to lie to them, telling them everything would be fine, when there was a chance it would not. Hopefully, we had prepared them for this recurrence.

By March - one year after this whole thing started - I was going in to have bilateral lung surgery. It was by far the most painful surgery I had ever experienced. All seven nodules were removed; the surgeon had gotten it all. A week later I went home, continued to recuperate, and made a decision to resign my teaching position, stay home and concentrate on my health.

For the next year, all my scans were clear, but just when it seemed that all of this was behind me - WHAM! I went in for a chest, abdominal and pelvic scan, and - sure enough - the next day I got the dreaded call. I had a recurrence very close to my pubic bone. I asked what that meant in terms of my chances. All I wanted to know was what I needed to do in order to be there for my children. My doctor told me that the next step was to remove my bladder (I now have a urostomy) and vaginal wall. She hoped the pubic bone was not affected. "If it was," I asked, "what were my chances?" She told me that I would probably have less then a year.

I had the surgery at the end of the year 2000, and was in the hospital for three weeks. The surgery, performed by my gynecological oncologist and an urologist, took 13 hours. In addition, they gave me a strong round of intra-operative radiation to the pelvic area. Thankfully, the cancer had not spread to the pubic bone. I had a good chance of making it.

Three months later, a few more nodules were found in my lungs and I had to go back for surgery, but as of today, it has been almost two years since my last recurrence of vaginal leiomyosarcoma. I can say for certain that my life has changed physically, as well as mentally and emotionally. And I can say that I am blessed with a wonderful husband who has accepted the changes cancer has brought to our lives as a couple. We've been on the roller coaster from hell. We once thought it would never end, but now, I believe, it has.

I am grateful to have the opportunity to share my story in the hope that maybe it will give someone the courage to continue fighting; to see that even when things look really bad, you still have a chance.

January 2003