MY LIFE Matters: TNBC Patient Voices Issue 2022 - 12

Conversation CHEMO BRAIN
challenge with brain fog is that the research
community does not yet have a
solid way to define or measure it. The
typical tests used as part of a neuropsychological
assessment are designed
to identify cognitive dysfunction, and
typically aren't sensitive enough to catch
brain fog. This leads to a challenge. People
managing cancer are reporting that
" their brain is not working right, " and
when they go through lengthy, and often
expensive tests, the results come back
" normal. " These results can make people
feel invalidated. Research is underway
trying to identify more sensitive tests.
Brain fog can appear many ways, but
a commonly reported symptom is the
feeling as though a word is on the tip
of the tongue and simply won't come to
mind. Memory challenges are common
with brain fog, as is difficulty with
multistep tasks such as cooking from
a recipe, grocery shopping, or paying
bills. Challenges maintaining attention
may appear as being unable to follow
directions or conversations or complete
multistep tasks. The brain's processing
speed (think of your brain like a
computer that is loading a website too
slowly) can also be affected. This slower
processing results in not being able to
complete tasks in the time expected or
in needing more concentration to get
simple things done. Emotional changes
are also common, as the part of the
brain that helps balance or regulate
emot ion may be affected. This can
compound the strong emotions evoked
by changes in one's ability to think.
Generally, stronger feelings than " normal "
are part of brain fog, but shame,
embarrassment, fear, anger, and frustration
are commonly reported by those
managing brain fog.
These changes can also bring up
challenges in social, family, and work
environments, especially if brain fog
is not being talked about. Shame may
encourage the person managing the
changes to hide their experiences. Family
members may see changes but are
too afraid to bring it up or don't know
that it is a common experience for those
with cancer. Some family members may
cope by teasing or arguing as everyone is
trying to adjust to the unknown. Socially,
the person managing the brain fog
may retreat from meeting with friends
for fear of not being able to follow the
conversation or fear of not being able
to find a word and feeling embarrassed.
At work it may take more concentration
or time to accomplish a routine task.
As many as three out of every four
people experience brain fog while they
are in cancer treatment. For the majority,
symptoms improve over the year
following treatment. For about one in
three people, brain fog lasts longer. The
" I was already in a " fog " trying to accept
everything that was happening to me, so
focusing on one possible side effect when likely
side effects like hair loss and mouth sores, etc.,
were being emphasized, was unlikely. Potential
brain fog feels like the least of your worries at
that point. Later, you are finding that things
aren't necessarily clicking in your head or you
forgot what you wanted to say...you chalk it
up to fatigue and move on to your next doctor's
appointment. For me, it was hard to pinpoint
brain fog as a symptom that was occurring
because so many other things were happening
at the same time that felt more prevalent at that
particular time. The care team didn't ask, so I
simply forgot. "
- Deriece Harrington, Patient Advocate for Brain Fog Study, TriplePositive
Breast Cancer Survivor.
12
MY LIFE MATTERS
TNBC PATIENT VOICES ISSUE 2022
MY LIFE Matters: TNBC Patient Voices Issue 2022

Table of Contents for the Digital Edition of MY LIFE Matters: TNBC Patient Voices Issue 2022
