My Story | Nellie N., Massachusetts, USA
Renal cell carcinoma, 1995
Nephrectomy
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
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