|
|
|
|
|
DiagKNOWsis News |
HEADLINE: A CASE FOR
PATIENT ADVOCACY;
TRISHA TORREY TURNS MISDIAGNOSIS INTO OPPORTUNITY TO
HELP OTHERS
© Syracuse Post Standard
BYLINE: By Amber Smith Staff writer
What would you do if a doctor told you one summer day
that you had a rare cancer and without chemotherapy you
would be dead by Christmas?
Trisha Torrey is glad for all the things she didn't
do.
The Syracuse woman didn't blow all her money on the
vacation of a lifetime.
She didn't think her diagnosis was a death sentence.
Though paralyzed emotionally, she didn't give up hope.
She didn't stop asking questions of her
doctors: "Is chemotherapy my only option?" and "How do
you know I have cancer?"
What Torrey did do is keep playing golf.
She felt fine. She didn't have the fever and chills,
weight loss and malaise described by most people with
her type of cancer.
"I'm out here playing the best golf I have in years.
How can I need chemo?"
she asked. "It didn't add up."
That niggling suspicion helped move Torrey from grim
cancer diagnosis to spirited health advocacy. She says
her experience illustrates the importance of patients
taking responsibility for their health care and the
evolution of the doctor-patient relationship from
reverence for the doctor to health-care partner. Torrey
says that suits aging baby boomers who are more educated
and who have better access to medical information via
the Internet than previous generations.
"I never set out to prove I didn't have cancer," says
Torrey, 53, a poised marketing consultant who
specializes in Web site marketing and development. She
set out to find alternatives to chemotherapy, which from
all she read was not very effective in treating
subcutaneous panniculitis-like T-cell lymphoma, a cancer
that affects the cells of the lymphatic system
throughout the body. The day she was scheduled to start
chemotherapy she got a second opinion. What she
ultimately discovered was that she didn't have cancer,
but an inflamed cluster of cells called panniculitis
that looked like cancer under a microscope.
Torrey's oncologist, Dr. Jeffrey Kirshner, admits
"it's not that uncommon to have a questionable
diagnosis, particularly if you're dealing with a rare
diagnosis." Tumors of the lymphoid tissue called
lymphomas, particularly, can be tricky. "It's not always
black and white. Sometimes there are borderline changes
that could be pre-malignant. Sometimes there are benign
conditions that could resemble a malignancy," he says.
Torrey vividly remembers the "you've got cancer"
phone call she got at 7 p.m.
on a Thursday last July.
She had been watering her lawn June 29 when she felt
a lump the size of a golf ball in the lower right
section of her abdomen. Her mother had been prone to
cysts, so Torrey wasn't alarmed. Two days later, she saw
her doctor, John Charles. That afternoon, in a procedure
as simple as getting her teeth cleaned, Torrey had the
lump removed in the office of general surgeon Brian
Anderson.
He called her at home two weeks later. He said two
laboratories had given the diagnosis of subcutaneous
panniculitis-like T-cell lymphoma, and he was referring
her to an oncologist.
Torrey hung up the phone in complete shock. She
plugged her diagnosis into several Internet search
engines but only found doom-and-gloom descriptions. What
she read scared her.
She knew her life was going to change, at least
temporarily. She knew she would require multiple medical
tests and doctor visits and treatment of some sort. She
broke the news to friends. People started praying for
her. She turned down consulting work. She couldn't
sleep.
"That phone call, those words never left me. They
colored every thought. They got in the way of
everything," she recalls.
Her appointment with the oncologist was nine days
away, and Torrey hated being in limbo.
"You can give me the worst news in the world, and I
will figure out how to deal with it, but don't give me
question marks because I don't deal with question marks
very well at all," she says.
The oncologist she saw first took ill, so one of his
partners took over Torrey's care. She prefers not to
name the doctors' group because, she says, she 's not
trying to ruin reputations, and the mistakes that took
place in her case could have happened in any practice.
She remembers the oncologist telling her he had never
seen this type of lymphoma and was sending her lab work
to a specialist at the National Institutes of Health.
Torrey says he told her that her diagnosis had been
confirmed independently by two different labs, and even
though her blood work and a computerized tomography (CT)
scan of her abdomen showed nothing abnormal and she had
no symptoms, her cancer was so aggressive that she
needed to begin chemotherapy right away.
Torrey wanted to wait for the opinion from the
National Institutes of Health specialist. But the
oncologist warned her, "You'll never make it to
Christmas."
She requested a copy of her medical records and began
learning words such as "molecular clonality,"
"morphology" and "stains."
Torrey had no trouble understanding some phrases from
the two different laboratories where her tissue sample
had been analyzed. The lab report from Crouse Hospital
said the sample was "suspicious for" subcutaneous
panniculitis-like T-cell lymphoma. The report from
Upstate Medical University stated it was "most
consistent with" subcutaneous panniculitis-like T-cell
lymphoma. Torrey understood she did not have a
definitive diagnosis.
"Most tumors are pretty straightforward," says Dr.
Robert Hutchison, director of clinical pathology at
Upstate Medical University. He says there are 20 to 30
common tumors, and 200 to 300 rare tumors. "The rare,
rare things will fool anyone."
Subcutaneous panniculitis-like T-cell lymphoma looks
very much like panniculitis, he says. "You pretty much
have to go to your highest power on your microscope to
see differences." Both are inflamed clusters of cells,
but one is life-threatening and the other is not.
If a pathologist isn't sure about something,
Hutchison says, he asks a colleague for her opinion. Or
he consults someone from another lab. Both may agree
that the tumor sample looks like cancer - which is what
happened in Torrey 's case - only to find a third expert
who says it's not cancer.
Technically, no mistake has occurred, he says. "In
the meantime, the patient has gone through hell."
Dr. Rachel Elder is director of the pathology lab at
Crouse Hospital. She says the Joint Commission on
Accreditation of Healthcare Organizations is promoting
patient safety. "I think, in general, medicine is trying
to improve everything."
But, it's a team effort, she says, and patients bear
some responsibility.
"You're a customer, too," she explains. "You wouldn't
just have the shoe guy give you any pair of shoes, and
wear them. You would say, "I don't like this shoe."'
That's difficult for some patients who don't like
asking questions and don't like making decisions. Torrey,
Elder says, "is really into "I want to know everything I
can."' She spoke with Torrey by telephone as Torrey
pieced together her lab reports.
As chief quality officer at Crouse, Derrick Suehs
focuses on minimizing errors.
"Sometimes bad things happen, even though no mistake
was made," he says, emphasizing that medicine is part
science and part art.
Crouse Hospital in recent years has encouraged
patients to become more involved in their care. "You
have to advocate for yourself," he says. "You are part
of the equation."
Torrey's primary-care doctor, John Charles, agrees.
He's proud of her for asking questions until she got
answers. "You should be comfortable with what's going on
with you," he says.
Torrey says she spent two months adjusting to her new
reality: "I'm completely healthy."
During that time, she created a Web site,
www.diagknowsis.com . It features sections on how to
research medical diagnoses and a resource library.
Diagknowsis is designed to empower patients to
research treatment options and partner with their
medical advisers. Torrey hopes if a doctor tells you
that you have cancer, you will have a place to begin
your search for answers, or at least some educated
questions.
GRAPHIC: PHOTO Michelle Gabel/Staff photographer TRISHA
TORREY,of Syracuse, was on the brink of starting
chemotherapy for what she was told was a rare and deadly
form of cancer, when she discovered that she didn't have
cancer at all.
Her desire to get a second opinion led her to much
knowledge about her supposed- cancer. PHOTO Frank
Ordonez/Staff photographer TRISHA TORREY,with her dog,
Crosby, at her Syracuse home. When Torrey was told she
had cancer, she got a second opinion, which led to her
learning of her misdiagnosis. PHOTO Screen capture
TORREY CREATED this Web site, www.diagknowsis.com, which
features sections on how to research medical diagnoses
and a resource library. It is designed to empower
patients to research treatment options and partner with
their medical advisers.
LOAD-DATE: April 18, 2005 |
|
|
|
|
 |
|
