New survivorship documents at ASCO
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 newdoctors 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.
* New survivorship documents:
http://asco.org/treatmentsummary
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(I think it's 2 documents there, per type of cancer)
If your type of cancer is not listed there (yet), bookmark the webpage and
check back, from time to time.
J
New survivorship documents at ASCO 
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