8
Fall 2012
OUTREACH
In June 2009, after
e x p e r i e n c i n g
nonspecific symptoms
for 3 months, I received
an emergency CT scan
after my levels of serum
bilirubin (a bodily fluid
analyzed to test liver
function) rose rapidly.
I thought it was liver
cancer, but it turned out
to be locally advanced
unresectable pancreatic
cancer.
I told the doctor and
physician assistant who
broke the news to me:
“
No one gets off in this
life easy.” I knew this road was going to be tough. I was
referred to a hospital known for treating pancreatic cancer in
Seattle for staging and treatment.
From July 2009 to September 2010, I was treated with
a standard protocol of chemotherapy along with a more
aggressive chemoradiation combination. The primary tumor
was 4.5 cm in size at diagnosis and by my latest CT scan
in June 2012, it had shrunk to about 14 mm. The tumor
is stable so far; no further growth or metastasis has been
detected. The last time I was treated was in September
2010.
Presently, every six months I see my oncologist and
have a CT scan.
At one time, I was told by my oncologist, “I never told
you this, but, I gave you four years.” I replied, “I was never
going to ask the prognosis with this bad boy; I’d rather not
know the time I have left.” I decided that rather than wait and
die, I should be proactive, get informed and become involved
in my care.
After diagnosis, I started down the road of self-advocacy
by contacting another Seattle cancer center for information on
integrative medicine. An informative naturopath professional
recommended supplements to help me deal with side effect
and symptom management and also suggested I read a book
on nutrition and cancer.
I also wanted to learn about all of my treatment options,
so I decided to look into clinical trials in my area. I know that
clinical trials are the only way new treatments can be made
available to someone like me. However, there were none that
I qualified for that were close to my home or available for my
situation, so I was not able to pursue a trial at that time.
Learning about pancreatic cancer and about the exciting
new treatments that will be available in the future is very
important, so I attended educational seminars hosted in
Seattle by the Pancreatic Cancer Action Network. They were
very informative and gave me the opportunity to learn from
experts in the field of pancreatic cancer. I have been fortunate
to have top medical researchers and doctors located right
here in my hometown.
I also attended a fundraising event where I had the
opportunity to meet long term survivors. I met a volunteer
whose mother was diagnosed six years ago with stage IV
pancreatic cancer and is doing very well. I told the volunteer,
“
I didn’t think that was possible.” He said, “The clinical trial
worked.”
The cancer actually improved my health in some areas.
I lost over 20 pounds with no strength reduction; this was
good for me because I needed to lose a little weight. I feel
so much lighter now. Last summer, I was able to complete a
big 160-mile bicycle ride with 9,000 feet of elevation. I was
too heavy before the cancer diagnosis to do that ride! Losing
weight also lowered my blood pressure, which was reaching
the level of pre-hypertension.
Getting help and support from others is as important
as being informed and involved in your care. I am fortunate
that there is an in-person support community in my area.
This great support group also offers interesting educational
sessions. It also helps to have a sense of humor when
dealing with this cancer!
A STORY OF HOPE AND INSPIRATION
By P. Pisani, Snohomish, WA
P. Pisani
FIND HOPE THROUGH THE SURVIVOR AND CAREGIVER NETWORK
There is nothing quite like talking to someone who has been through a similar
situation. Share information, ask questions and gain support and inspiration by
talking to others facing pancreatic cancer through the Pancreatic Cancer Action
Network’s Survivor and Caregiver Network.
To connect with a Survivor and Caregiver Network Volunteer, call a PALS Associate
toll-free at 877-272-6226 or email
pals@pancan.org
.
This one-on-one connection can serve as a reassuring source of hope and inspiration.