MY LIFE Matters - Advocacy in Action - 15

FACTOID
#3
Sixty-three percent of survey
participants that received a
TNBC diagnosis required multiple
biopsies (2- 6 times).
Tip #3: Ask your care team what kind of
biopsy you will be receiving (and why that
one was chosen), what you should expect
during the procedure, what you will receive
regarding results, and what to expect for
recovery. It is important to get the correct
diagnosis and to learn as much as possible
about your cancer. Biopsies are sometimes
needed in different areas of your breast, and
can help your medical team provide conclusive
and accurate diagnosis and determine
treatment options based off these findings.
Fifty-two percent of survey
participants that received a
TNBC diagnosis either did not
receive or did not know if they received
biomarker testing.
FACTOID
#4
Tip #4: Did you know you should ask
your doctor for biomarker testing at the
time of your diagnosis? Biomarker testing,
which includes genetic testing, can help your
medical team decide on the best treatment
options including possible clinical trials.
Biomarker testing results can take up to four
weeks to get back; but the information may
help you and your doctor to decide on the
best treatment options or clinical trial that is
right for you.
FACTOID
#5
Fifty-seven percent of survey
participants were initially
diagnosed with a cancer subtype
other than TNBC.
Tip#7: Your medical team works for
you, the patient! You should feel respected,
a part of the medical team, and the lead
decision-maker. It is important you feel
comfortable, informed, and supported by all
individuals involved in your care, including
the office staff. You have the right to feel
comfortable with the relationship between
you, your provider, and the office staff. If the
relationship doesn't meet your needs, let them
know and consider getting a second opinion
and transferring to a new medical team.
Twenty-six percent of survey
participants diagnosed with
TNBC shared that the information
they received could have been
better with respect to treatment options
and prognosis.
FACTOID
#7
Tip# 6: Become your best advocate. Ask
Tip #5: Comprehensive biomarker testing
is an important early step toward understanding
mutational patterns in cancer and
the specific cancer subtype, which then determines
the appropriate and optimal treatment
course. It's important to understand
that mutational patterns may change over
time so repeated biomarker testing may be
recommended by your doctor. It's important
to ask your doctor about biomarker testing
and genetic testing before your treatment is
determined.
Forty percent of survey
participants diagnosed with
TNBC stated they did not feel
comfortable/safe with their doctor's
approach and communications.
FACTOID
#6
your doctor about all your treatment options,
including genetic and biomarker testing,
treatment options, clinical trials, types
of surgery, options for doing or not doing
reconstruction surgery, questions you may
have on fertility preservation, mental health
support and additional services, such as a
nurse navigator, social worker, or financial
assistance are available to you. Also ask
about patient organization peer support that
is available to you.
Survey participants diagnosed
with TNBC reported that the
most common areas they felt
bias from on the part of their provider
and/or staff were type and level of insurance
coverage, disability, age, body
type, and language.
FACTOID
#8
Tip 8. Disparities impact cancer care at
every level, from screening and diagnosis,
to access to care and treatment. Everyone
deserves to have access to quality care,
understand their diagnosis and treatment
options, and be treated with dignity, care,
and respect without bias every step of the
way. If you ever feel uncomfortable, even on
the next visit, say something.
More than half of survey participants
diagnosed with TNBC
reported that clinical trials
were not discussed with them.
FACTOID
#9
Tip #9: Every person diagnosed with
cancer should have the opportunity to
participate in clinical trials as an integral
component of high-quality cancer care and as
a basic human right. Clinical trials are now
available and are a good treatment option
for patients diagnosed with TNBC because
of the opportunity to act on results of your
biomarker testing for targeted treatment.
Novel targeted treatment is available through
clinical trials. There is a need for BIPOC
communities to participate in clinical trials so
that researchers understand what drug treatment
therapies are safe and effective for you
and your community. Discuss clinical trials
as a treatment option with your medical care
team and keep asking questions since new
trials and medical advancements frequently
come up.
You are your best advocate! Keep pushing for
options for healthy results! l
MY LIFE MATTERS
ADVOCACY IN ACTION | FALL 2023
15
MY LIFE Matters - Advocacy in Action

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