In Their Own Words: Susan Lowell Butler, Exec. Director DC Cancer Consortium

Uploaded by NCIgov on 21.09.2010

Once upon a time back
in 1995 I was unlucky enough
to be diagnosed
with two advanced
cancer primaries.
Stage II breast cancer
and Stage III C ovarian cancer.
This was a girl who, at 52,
had no family history of either
of these cancers
and still don't.
And in one year I had the major
surgery for the ovarian cancer,
eight cycles
of a three-drug protocol
that was extremely toxic.
And I believe
that special treatment is why
I'm here.
Then I emerged successfully
from that, had second-look
surgery, to make sure there was
no new ovarian cancer growing,
then I went
on to have mastectomy,
for the breast cancer,
and finally radiation.
It was a heck of a year,
but I'm here.
I went 13 years,
many of those years involved
with NCI and NIH adding cancer.
I helped found the Ovarian
Cancer National Alliance.
In my 13th year,
of survivorship, uh oh,
routine colonoscopy,
and there wrapped
around my colon was
ovarian cancer.
The devil was back,
after 13 years.
So I'm in treatment,
I've been steadily in treatment.
I can't tell you how miserable
you can be in treatment.
You know the thing that's either
going to save your life or not ,
makes you miserable,
even if you weren't sick
from the cancer.
And it isn't that way anymore.
For the overwhelming majority
of patients, reasonable levels
of comfort and care can be had.
I work fulltime;
I run a 20 million dollar
organization, with 12 staff,
and, with 30 grants
in the field.
It's a very different world
today for patients undergoing
cancer treatment.
Nope, we don't have a cure,
but we have quality of life
in a way we sure didn't
back then.
But it's the science stupid.
It is. What we're now seeing is
some molecular pathways,
that are leading
to the investigation of drugs
and formularies that speak
to the particular problem a
given individual might
have genetically.
These targeted therapies,
make a huge difference
in your quality of life
and how well you do,
that's massive,
that's a major turning point.
I'm hoping I'll find one
that works for me.
Quite often
when ovarian cancer recurs,
it recurs more nastily,
than in it's initial
presentation and mine has.
So these new pathways are
of great interest.
What's being examined is my
tumor, not general theories,
my tumor, and that's the future,
that's the path
of decision-making.