Young Canadians have been left
in the dust when it comes to cancer care, according
to the first report to focus on this age group. While
mortality rates for many cancers have plummeted, our
youths' odds of survival are far worse than they were
25 years ago, when they enjoyed the most favourable
prognosis of all. "People are now waking up to the fact
that adolescents and young adults have essentially been
orphaned," said Dr Ronald Barr, a pediatric oncologist
at McMaster University who co-edited the report. "These
patients simply fall between the cracks of the healthcare
system."
BEHIND
THE TIMES
Adolescents and young adults (AYAs) between the ages
of 15 and 29 are the only demographic for whom cancer
treatment outcomes worsened between 1975 and 2000, due
in large part to a dearth of research, clinical trials
and focused treatment, the landmark document published
by the National Cancer Institute (NCI) found.
The improvement in survival rates
for AYAs with cancer lags behind all other age groups
and this deficit is increasing, especially among males.
The monograph is the first to bring
together epidemiological data and risk factors for the
development of AYA-specific cancers. It's the culmination
of four years of research — a joint venture between
the NCI's Survival Epidemiology and End Results (SEER)
program and the Children's Oncology Group, comprised
of all 17 pediatric oncology centres in Canada and institutions
in five other countries.
NO
YOUNG GUNS
Young cancer patients aren't only faring worse than
everyone else — more are getting sick in the first
place as well. Cancer incidence increased steadily among
AYAs over the last quarter century, with young adults
nearly three times more likely to be diagnosed with
cancer than children under 15. "Contrary to their own
beliefs, these patients are not invincible," said Dr
Archie Bleyer, an Oregon-based oncologist and lead editor
of the monograph.
Physicians aren't exactly hip to
the problem, either. "Whether presenting at a school
clinic, family doctor or ER, they are at an automatic
disadvantage because cancer is often not part of their
differential diagnosis. This is the first thing that
needs to change," he added.
The good news is that cancer in
the young is still relatively rare, accounting for only
2% of all invasive tumours. Furthermore, the rates do
seem to have started to drop: cancer incidence among
individuals in the upper age ranges at least appears
to be returning to 1970 levels.
DISTINCT
SOCIETY
The types of cancer most likely to afflict AYAs aren't
due to hereditary and environmental factors, the monograph
illustrates. There are exceptions, of course, caused
by UV-exposure (melanomas), human papillomavirus infection
(cervical carcinoma), HIV (Kaposi sarcoma and certain
non-Hodgkin lymphomas) or the Epstein-Barr virus (Hodgkin
and Burkitt's lymphomas).
Overall, the distribution of cancer
types — Hodgkin lymphoma, melanoma, testes cancer,
female genital tract malignancies, thyroid cancer, soft-tissue
sarcomas, non-Hodgkin lymphoma, leukemia, brain and
spinal cord tumours, breast cancer, bone sarcomas, and
non-gonadal germ cell tumours — is unique to this
age group, but changes significantly over time so that
the main types of cancer affecting the youngest members
do not resemble those affecting the oldest ones. "We
are beginning to better appreciate the complexity of
this issue and there are now clinical trials being designed
that are specifically focused on this age group," Dr
Barr said. The greater challenge, he added, is at the
healthcare delivery end, which isn't properly structured
to handle AYA cancer patients.
A survey he conducted showed that
Canadian AYAs sent to adult oncology centres had longer
treatment delays than those at pediatric centres. Though
treatment came faster at pediatric centres, only 20%
got onto clinical trials. "This is fundamentally important
because of the evidence that being on a clinical trial
improves the prospect of survival," he said.
Dr Bleyer hopes one of the effects
of the monograph will be the development of an AYA-specific
subspecialty of oncology, but he conceded, "This is
still a long way off."
Drs Barr and Bleyer are now working
with colleagues on a comprehensive book dealing with
the various issues related to AYA cancer, which should
be available in Canada and elsewhere later this year.
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