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Brenda
Brenda H. was diagnosed with
Wilm's tumor at the age of eleven months in 1956. When
she was around 13 years old, Bren developed scoliosis
of the spine. She did not hear the word 'late effects'
or realize how many of her health concerns, including
scoliosis, were related to her initial cancer treatment
until she was 31 years old. Bren received full disability
because of chronic health problems related to radiation
treatment in 1986. She lives in the Midwest and is married
to her childhood sweetheart. They have a grown daughter
and three grandchildren.
What type of treatments did you receive?
I received 3400 rads of cobalt radiation to the abdomen.
I also received scatter radiation everywhere. Apparently,
the machines they used in 1956 leaked, though this was
not discovered until much later. I found out from a
radiologist at the hospital that originally treated
me.
What kinds of late effects have you experienced?
As of today, my late effects are chronic back, neck
and shoulder pain, fibromyalgia, diabetes type II, GERD,
and I've had polyps removed from my stomach. My gallbladder
was removed and I was told it was very tiny, and my
right ovary is "missing." A physician at the children's
follow-up clinic that I attended told me that the radiation
dissolved my ovary over the years and caused my early
menopause. I have a 25%-30% curve in my back due to
scoliosis that gets worse as I age. I have a curve in
my neck from where the spine is trying to compensate
for the curve in my lower back, and the right side of
my body (not including the limbs) has atrophied and
is smaller than the left. I also have occasional head
tremors when fatigued or in a great deal of pain.
How did you become aware that your health problems
were related to treatment?
30 years after my original treatment, I saw an orthopedic
surgeon for my back problems. We tried a back brace,
TENS unit, traction, chiropractor, physical therapy
with massage and heat and various drugs. After spending
an entire summer only able to get up and go to the bathroom
and crawl to bed each night, I decided to file for disability
and called the hospital where I was originally treated
for cancer to get copies of my health records.
The hospital referred me to a radiologist that had studied
late effects when I was 31. The radiologist told me
I had the back of a 65 year-old woman. She said MRI's,
X-rays, and CAT scans wouldn't show the damage. To see
all of the radiation damage, she said, my tissue and
organs would have to be put under a microscope.
This radiologist also told me that most doctors were
laymen in the knowledge of radiation late effects. She
wrote a letter for me to file with my appeal on my denial
for disability. Her letter is what brought the decision
in my favor.
Have you visited any specialized late effect clinics?
Yes, I first went back to the children's follow-up clinic
at the same facility as my original treatment when I
was fighting for my disability. They don't normally
see adults but they agreed to see me. Since 1996, I
see them about every three years. In my 2002 meeting,
the doctor confirmed that all of my problems were from
the late effects of radiation therapy, including diabetes
and my daughter being a full-term baby with a low birth
weight of 2 lb. 15 oz. (Radiation to the abdomen can
cause the uterus to shrink leaving little room for the
baby to grow.) He also confirmed that radiation and
surgeries had caused my intestines to become impacted.
It was very important to me to confirm a lot of the
things I suspected. I highly recommend any cancer survivor,
especially a childhood cancer survivor, go back to their
follow-up clinic or to one of the other clinics that
specializes in late effects for cancer survivors.
What has your experience been like with physicians?
I've had some hurdles to cross. Most of the doctors
I've seen do not understand radiation late effects.
They usually aren't willing to prescribe pain medicine
for lifelong chronic pain. Today, my primary care physician
(PCP) isn't knowledgeable about late effects, as most
aren't, but she is open to what I tell her when I come
back from my follow-up clinic visits. She welcomed the
Long-Term Survivors Follow-Up Guidelines and put them
in my records to use for future reference. The follow-up
clinic stays in touch with my PCP now.
What sparked you to get involved in the Cancer Survivors
Project?
When I joined the mailing list of LT-Survivors on the
ACOR website, I remember thinking, "Wow, another person
just like me." I believe through having this website,
we may be able to help those that are experiencing late
effects as well as help some doctors realize they do
exist. My goal is to reach out to others so they too
can find someone "just like them."
What thoughts would you like to share with people
who are just discovering this website?
First of all, I know what a relief it is to find others
like you. Then you get to reading the information and
you may become scared. I remember being petrified when
I started doing my own research on the Internet. I finally
realized that not everything I read about was going
to happen to me. I believe that knowledge is power and
a person should be their own health advocate. I hope
this website can also help people show their families
what others are going through and help confirm that
they are having health problems so they aren't looked
upon as a hypochondriac.
What keeps you going?
I believe that my love of life keeps me going as well
as my faith in God. I know that most of my health problems
are out of my control. What damage was done was done
when I was 11 months old. I can't change that and neither
can anyone in the medical field. Without my faith I
think a lot of what I'm going through would be unbearable.
I keep going for my husband, parents, daughter and son-in-law
and mostly for the love of my grandchildren. I also
keep moving to keep my body from quitting on me.
What was it like getting disability?
I was initially turned down because the main problem
was back pain. An attorney told me I'd have to be confined
to a wheelchair to get my disability at such a young
age. The disability review panel, I believe, would not
consider all the things wrong with me collectively,
but looked at problems individually. Then I learned
about late effects. I also contacted a congressman in
my state. His staff got my permission in writing to
get involved in my case. This let the review panel know
someone else was watching their findings. They cannot
force the disability review panel to make a favorable
decision but they can help speed things along. I think
having a letter from a physician knowledgeable about
radiation late effects along with having an attorney
and a congressman on my case is what finally helped
the decision go in my favor. It took me two years to
get a favorable decision. Getting my disability approved
gave me confidence because it confirmed my late effects.
I didn't care anymore that I could no longer work. I
just wanted to be believed that I was having problems.
The disability income has also helped with my ongoing
medical expenses.
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