Long-Awaited Blueprints to Guide Cancer Survivors' Future Care

HEALTHBEAT: Long-Awaited Blueprints to Guide Cancer Survivors' Future Care
Monday, September 24, 2007 11:33 PDT

WASHINGTON, D.C. -- You've finished the surgery, the radiation, the
chemotherapy. You're a winner, a cancer survivor. Now what?

A new push is on to provide patients with "survivor plans," long-awaited
blueprints for the customized follow-up care they'll require for years.

Few today get that careful send-off as they leave cancer specialists and
head back to their regular doctors, even though the Institute of Medicine
alerted the nation two years ago that these survivors' special needs weren't
being met.

Now a major doctors' group is creating easy-to-fill-out checklists that
survivors can hand to future physicians _ what checkups to get and when,
what late side effects their treatment may trigger, what new symptoms to
watch for.

The American Society for Clinical Oncology recently posted the first such
documents _ for colorectal and breast cancer _ on its Web site, free to copy
and customize. ASCO is developing guides for other leading malignancies _
lung cancer is next _ and a more general plan for less common cancers.

"We're at the cusp of a very dramatic change in the way we're going to be
delivering coordinated care for cancer survivors," predicts Dr. Patricia
Ganz of the University of California, Los Angeles, a cancer survivorship
specialist who spearheaded the ASCO guides.

Today, "the patient feels lost," she explains. "If everybody has the same
marching orders, it will be a lot easier."

There are roughly 10 million cancer survivors, a population rapidly growing
thanks to advances in early detection and treatment.

When active treatment ends, those people too often don't realize their
simmering health risks. It's not just the possibility of the initial cancer
returning or a new one forming. Treatment may have left infertility, memory
or mobility damage, impaired organ function. Some side effects may not
appear for years. Then there are psychosocial consequences, from depression
to problems keeping health insurance.

Consider the contrasts: Have a baby and you're sent home with care
instructions, including when mom and child are to check in with their
respective doctors. Have heart surgery, and likewise you receive nutrition
and exercise rules, a list of worrisome symptoms and a checkup date.

Cancer treatment typically is far lengthier and complicated. Yet oncologists
until now have had no standard way to offer a similar guide. Doctors like
Ganz have pioneered survivor plans at specially designated cancer centers,
but few people are treated at such hospitals.

"A lot of patients get dropped," says Dr. Aziza Shad, who directs Georgetown
University Hospital's cancer survivorship program and writes survivor plans
for her own patients.

"I personally think it's the responsibility of every treating oncologist to
have this information available," Shad adds. "You did the treatment. ...
Your responsibility is also the aftercare."

The new guides come in two parts. First is a detailed treatment summary: The
cancer's type and stage; tests of lymph nodes, genes and other indicators of
prognosis; how much chemotherapy patients actually received, as side effects
often mean skipped or lowered doses.

The second part is a consumer-friendly list of future exams and what
symptoms to watch for.

A written document is crucial because even when doctors patiently explain
cancer treatment, "patients are notoriously overwhelmed and not hearing half
of what was said," says Ellen Stovall of the National Coalition for Cancer
Survivorship, herself a repeat survivor.

How can it make a difference?

_Say a woman suffers some shortness of breath. Does her family doctor assume
it's the 20 pounds she just gained _ or do a more sophisticated heart exam
because she's a breast cancer survivor? Certain chemotherapy can cause
serious heart damage.

_Say a breast cancer survivor later gets lymphoma. Her new oncologist would
need to know exactly how much of the powerful chemo adriamycin she received
before to know if it was safe to try again.

_Ganz saw a patient last week who had beaten lymphoma at age 29 with chest
radiation, but now has breast cancer in her 50s. She wanted just the tumor
removed, but that requires radiation therapy and it's often impossible to
radiate the same spot again. Amazingly, the hospital found her old radiation
records _ and doctors could tell the new rays wouldn't overlap the old,
letting her keep her breast.

_And Georgetown's Shad recounts a child who disappeared from her clinic's
follow-up care for five years _ only to reappear with a drastically lopsided
face. Radiation had stopped short the bone growth on one side of his body,
something his new doctors hadn't anticipated in time to treat.

"Thank god we have plastic surgery," she says with a sigh.

The concern is whether busy oncologists will embrace the guides; they do
create more work. Legislation is pending in Congress that would require
Medicare to pay for cancer-survivor plans.

"It's going to require a real shift in doctors thinking about how they spend
their time with their patients and what they need to know," says Stovall _
who urges patients to ask for the guides.

___

On the Net:

New survivorship documents: http://asco.org/treatmentsummary