 "My name is Jean McCoy and I have a genetic disorder called Von Hippel-Lindau disease, also know as
VHL. Von Hippel-Lindau disease is a hereditary cancer syndrome that causes the development of tumors
in certain blood-rich areas of the body – such as your eyes, brain, spinal cord,
pancreas, kidneys and some VHL tumors are cancerous while others are not. And
as you will soon hear, I have experienced both types.
As a young girl, I grew up admiring my grandmother for her strength of spirit
and will to live. You see when my grandmother was about 30 years old she went
completely blind as a result of VHL tumors. And after that she underwent multiple
surgeries to remove tumors in her brain and in her kidneys. But my grandmother
lived some fifty years after her diagnosis and died of an unrelated illness. She was certainly a great
role model. And although I always knew that my grandmother had VHL I never thought
that I had the genetic disorder because my mom did not have it. However, my
thinking changed during the summer of 2002. Just weeks after the birth of our
third child, my mother was diagnosed with advanced kidney cancer and several benign
tumors in other areas. She did have VHL after all. Because of the seriousness
and rarity of the disease, she was invited into a special VHL study conducted
by the National Cancer Institute at the National Institutes of Health in
Bethesda
,
Maryland
. So during the fall of 2002, she had surgery to remove one kidney altogether
and another several weeks later to remove the cancerous tumors from her other
kidney but unfortunately her kidney cancer had spread. So in the last years she’s
had surgeries to remove both metastatic tumors and several benign tumors from
her spinal cord. But thanks to the amazing skill and care of the doctors and nurses of the National Institutes of Health my mother
continues to do well.
So here’s my part of the story… After learning that my mother had VHL, my husband and I made the difficult
decision for me to be genetically tested for the disease. In July, 2003, just
days after our daughter’s first birthday, we received the results from my genetic
testing. I also had VHL. I immediately underwent a number of tests and scans to determine if I had
any VHL-related problem. Unfortunately, I already had several manifestations
of the cancer syndrome. We were not surprised to find out that I had several
benign brain tumors which were the cause of my recent medical problems. However,
we were totally shocked when we were told that both my kidneys had multiple tumors.
I remember sitting, holding hands with my husband, in the radiologist’s office,
as he told me I had bilateral renal cell carcinoma. Here I was, a 34-year old wife and mother of three young children, and I had cancer in both kidneys.  I was quickly accepted into the VHL study at the National Institutes of Health.
In Sep, 2003, I had neurosurgery to remove a brain tumor. Although benign, it
had wreaked havoc on my hearing and balance over the last couple of years. Just
thirteen days later, I had surgery to remove the growths and cancerous tumors
in my left kidney. Nine weeks later, I returned to the National Cancer Institute
for the same surgery on my right kidney. Thanks to God’s divine mercy and the
amazing knowledge and skill of my surgeons, I am now CANCER-FREE and I have full kidney function. So I’ve learned to be an advocate of my own
health. We will closely monitor my condition. I will undergo scans and tests
on a regular basis. This careful screening can mean early detection of potentially
serious manifestations such as kidney cancer. Although a cure had not been found
yet for VHL, genetic testing, proactive screening and treatment can prevent the
disease from spreading. The American Cancer Society provides an enormous wealth
of support for those facing the challenges of cancer. I am particularly grateful
for the funding they provide to the National Cancer Institute at the National
Institutes of Health so that people like me can participate in clinical trials.
With help and such support, the talented physicians and scientists have made
great strides towards finding a cure for VHL. My grandmother, mother and I are
all testaments to the wonderful things that the American Cancer Society does for
cancer victims in this nation. As I record this message, it has been barely
a year since my diagnosis, surgeries and treatment. It has been a very difficult
time for me, both emotionally and physically. Without the support of my family
and friends we would have never made it through this ordeal. I have been comforted
by all the prayers and words of encouragement of our family, friends and even
strangers. My faith has not wavered. I know God has a plan for me and I feel embraced by
His love."
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