"Start with an Education"
Deciphering The Diagnosis
Chondrosarcoma. I didn’t even know
what language that was. I had to have the doctor spell it
out for me twice and then repeat it so I could say it. Chondrosarcoma.
And, as soon as I could say it I wanted to know everything
I could about it. From what I’ve discovered mine was
not only a normal reaction but a healthy one, and something
I recommend for everyone.
When the doctor shares the diagnosis with
you, he or she should describe it to you as fully as possible.
But you are initially shocked, confused and overwhelmed. You
may have a million thoughts racing through your head when
the doctor gives you this diagnosis. You will probably need
to digest your thoughts and then try to learn about the disease
when you’re ready.
Feel free to expect the doctor to explain
in further detail or request that he or she slow down and
repeat sentences. Even if time has passed since your doctor
gave you the diagnosis, call the doctor’s office and
request that your doctor share with you the latest information
available on the disease. Also, ask for recommendations so
that you can research the disease yourself.
The Search For Information
Medical books and journals can be confusing
if not downright scary. The information in them can be depressing
and troubling, and the language difficult to comprehend. It
was terribly hard to learn of the high percentage of people
who die within five years of being diagnosed with the same
sarcoma that I had. But this information often includes statistics
that date back many years, and includes differing levels of
diagnosis. (I learned that modern medicine and technology
have improved these statistics.)
When I told my family doctor, soon after
my diagnosis, that I was researching my chondrosarcoma, (the
tumor in my back), he explained to me that my tumor was a
stage 1 or 2, which is often successfully surgically removed.
The type he thought would be discussed in books and on the
Internet would be a stage 4 tumor, which is more serious.
And he was exactly correct in predicting what I found. Thanks
to his warning I was prepared for what I read. Remember to
research armed with information from your doctor.
Due to your emotional state of mind at this
time, and the amount of stress that you are experiencing,
you may find it difficult to concentrate on your research.
If that is the case, enlist a friend or family member to help
you with this important task. Be cautioned that unfamiliar
medical terms may be confusing and the information that you
find may be frightening, misleading, or inapplicable.
Put Technology To Work For You
Education and information are critical in
the war on cancer. We are lucky to have at our fingertips
modern technology to allow us access to the latest information
on many different forms of cancer, treatments, research in
progress, recent studies, nutrition, and support services.
If you do not have a computer available, you might be able
to access the internet at a school or public library.
Useful Sites On The Internet
When I first was diagnosed with cancer,
I surfed the Internet for information. I went to one of the
major search engines and typed in Chrondosarcoma. There I
found several sites that started me on my search. I recommend
the Internet for researching your type of cancer. If you are
not familiar with how to use the web ask for guidance at your
public library, local college or university, or at your cancer
center.
Websites
The Ulman Cancer Fund For Young Adults provides
support programs, education and resources free of charge,
to benefit young adults, their family and friends, who are
affected by cancer, and promotes awareness and prevention
of cancer. www.ulmanfund.org
The American Cancer Society is a nationwide
community-based health organization dedicated to eliminating
cancer as a major health problem by preventing cancer, saving
lives and diminishing suffering from cancer, through research,
education, advocacy and service.
www.cancer.org
The National Cancer Institute is the U.S.
government agency responsible for conduction and supporting
research on cancer. Access information on clinical trials
and more.
www.cancer.gov
OncoLink is run by the University of Pennsylvania
Cancer Center. This is a great educational site for both patients
and their families.
www.oncolink.upenn.edu
The Testicular Cancer Resource Center is
an organization that provides invaluable information about
testicular cancer.
www.acor.org/TCRC
Cancer Information Network provides information
on cancer, support and alternative treatments.
www.cancer-info.com
The Lance Armstrong Foundation homepage
was founded by world-class cyclist and cancer survivor Lance
Armstrong, and deals with education and research for those
interested in cancer.
www.laf.org
The National Coalition for Cancer Survivorship
raises awareness of cancer survivorship and strives to eliminate
the stigma of cancer by providing public policy leadership
on legislative, regulatory and financial matters. It promotes
advocacy among national cancer organizations for insurance,
employment and legal rights for people with cancer. NCCS produces
several excellent publications for survivors.
www.cansearch.org
Cancer Care, Inc. provides free professional
counseling, education and information, including referrals
for patients.
www.cancercare.org
The Candlelighters is a group that provides
support to adult survivors of childhood cancer.
www.candlelighters.org
The Cancer Hope Network is an organization
that offers one-on-one support for cancer patients and their
families by trained volunteer survivors.
www.cancerhopenetwork.org
The National Childhood Cancer Foundation
supports the Children’s Cancer Group research centers
as well as advocates for children, teenagers, and young adults
with cancer.
www.nccf.org
Patient Advocate Foundation is a national
non-profit organization that serves as an active liaison between
the patient and their insurer, employer and/or creditors to
resolve insurance, job discrimination and/or debt crisis maters
relative to their diagnosis through case managers, doctors
and attorneys. 1-800-532-5274
www.patientadvocate.org
National Hospice and Palliative Care is
a leader in providing end of life care and support.
www.hepo.org
Last Acts provides information and support
for terminal patients and their families.
www.lastacts.org
Gilda’s Clubs provider free of charge
support and networking groups, workshops and social events
in home-like settings.
www.gildasclub.org
The Wellness Community is a free program
of emotional support, education and hope for people with cancer
and their loved ones.
www.wellness-community.org
Fertile Hope is a comprehensive fertility
preservation resource for patients whose medical treatments
present the risk of infertility.
www.fertilehope.org
Planet Cancer is a community of young adults
with cancer, providing support and educational services.
www.planetcancer.org
Hill-Burton Free Care Program is a program
run by the U.S. Government that can arrange for certain medical
facilities or hospitals to provide free or low-cost care.
www.hrsa.dhhs.gov/osp/dfcr/about/aboutdiv.htm
Hospitals That Help
Many of the nation’s leading hospitals operate home
pages on the Web. While there are too many sites to list,
our web site provides links to many of the most helpful ones.
Find them at www.ulmanfund.org. During your search for information
and answers, pursue all possible sources and resources.
For more information contact us at:
The Ulman Cancer Fund For Young Adults
PMB 505
4725 Dorsey Hall Drive, Suite A
Ellicott City, Maryland 21042
410-964-202 888-393-fund (3864)
info@ulmanfund.org
www.ulmanfund.org
What Other Resources Are Available?
There are also many resources available in Print. The National
Cancer Institute offers a toll free phone line professionally
staffed by people trained to provide accurate personalized
answers to your cancer related questions. They will also send
free publications to you. Call 1-800-4-CANCER.
Also consider the American Cancer Society
as a resource. They can answer cancer-related questions, send
free publications and make referrals for related services.
Call 1888-ACS-2345.