Background
Increasing innovations
in medical technology have led to improved treatment resulting
in more Vermonters surviving with cancer each year. It is
estimated that over 3,150 Vermonters were diagnosed with cancer
in 2004. Of those, 64% will live at least 5 years. These people
will join over 18,000 Vermonters currently surviving cancer.
The Lance
Armstrong Foundation defines the term cancer
survivor to refer to an individual from the time of
diagnosis with cancer through the remaining years of life,
and includes caregivers, those people in a cancer survivor’s
life who are affected by the diagnosis, including family,
friends, and others.
The National
Cancer Institute has developed three stages of
survivorship. Living with cancer refers to the
experience of receiving a cancer diagnosis and any initial
treatment that may follow. Living through cancer
refers to the extended stage of treatment, those months and
years following initial treatment, when occasional –
or even continued – treatment/medication is necessary.
Living beyond cancer refers to the end of all
treatment and long-term survivorship.
In my case,
I was diagnosed with leukemia in 1999 and had a bone marrow
transplant in early 2000 and spent the rest of that year recovering.
I was living with cancer at that point. After a year
of recovery and my return to work, I continued treatment,
with regular checkups and am still taking medication today.
Now I am living through cancer. My goal is to be cured,
no more treatments – that’s when I will be living
beyond cancer.
As cancer survivors we face numerous physical, psychological,
social, spiritual and financial issues throughout our diagnosis
and treatment and for the remaining years of our lives. We
would all benefit tremendously from a coordinated effort to
support us. Steps are being taken on a state-by-state basis
thanks to grants from the Center for Disease Control. Many
states have developed comprehensive cancer plans or are currently
in the process of writing them. Each Plan addresses issues
of importance for cancer survivors in their state. Go
here to see if your state has a plan.
The Lance Armstrong
Foundation along with the Center
for Disease Control have developed a National Action
Plan for Cancer Survivorship, go here
to check it out.
There are now many organizations that are making the effort
to help us, please see my Survivor Links below to learn more.
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The
Statistics
In 1971 there were
an estimated 3 million Americans living with cancer.
In 2000 - 9.8 Million
Americans were living with cancer.
1.3 million Americans
were diagnosed with cancer in 2003.
64% of adults whose
cancer was diagnosed in 2003 will live at least five years.
79% of children
diagnosed in 2003 will live at least 5 years, with 75% living
10 years.
If this trend continues
1 in 3 Americans will be diagnosed with cancer in their lifetime.
Estimated Percent
of Cancer Survivors by diagnosis...
22% Breast Cancer
17% Prostate Cancer
11% Colorectal Cancer
10% Gynecologic Cancers
7 % Genitourinary Cancers
7% Hematologic Cancers
6% Melanoma
4% Lung Cancer
By Age
61% - 65+
33% - 40 to 64
5% - 20 to 39
1% - under 19
Sources:
American Cancer Society
Center for Disease Control
Lance Armstrong Foundation
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Dave's Story
As a cancer survivor, we have all gone through that horrible experience
of being told “you have cancer”. If you’re like
me, you probably didn’t hear what was said after that –
“they can’t be talking about me.” While dealing
with this news we have the difficult task of telling our family,
friends and the other important people in our lives of our diagnosis.
And, we have to make important decisions on treatment plans and
actions. This is a time when we can’t get enough information.
We’re fortunate that today, there is plenty of quality information
available on the web.
If you are like me, you arm yourself with as much information as
you can. You ask your health care team lots of questions. In my
case, I was always asking for options – they were there. We
chose each step in my course of treatment deliberately, after asking
many questions.
Now I’m beyond the active treatment stage and I find I still
have questions. It seems harder to find the answers. Will the leukemia
come back? Is that pain in my arm from treatment? Why do I get those
terrible cramps in my legs? Why am I tired? How has this experience
changed me, my relationships? Why me? I definitely need insurance,
how can I move or make changes in my job? My goal is to get older,
but what will Medicare cover when I get to that point?
I find that support groups are a great resource – in fact,
just talking to other survivors is a great resource. That’s
why I volunteer as a patient advocate, I get to meet or talk to
many survivors, and learn from their stories. If you live in a rural
area there may not be that kind of support available, but there
are telephone support group meetings as well as on-line groups.
Check out the National
Coalition for Cancer Survivorship or the American
Cancer Society for more information.
I think that as survivors we would all like our lives to go back
to “normal” – but that has changed. The cancer
changed us, the treatment changed us and we start to think of ourselves
as being different. Now we need to find out what the "new"
normal is for us. We’ve changed. I’d like to think I’m
changing for the better, how about you?
Just as we turned to our medical team to help us with treatment,
we need to develop our survivorship team to help us with living.
No one should have to “go it alone” after treatment,
your friends and family can help. Ask your doctor, social worker
or local cancer organization on how to find services that can help.
One out of four survivors have reported memory and attention problems
after chemotherapy. More research is being done. Some people call
it “chemo brain”. Some people think it’s an excuse.
It’s real, let your doctor know how you feel. Enroll in a
research program. Ask for help, others will work with you.
Closer to home, I’m involved with the development of Vermont’s
Comprehensive Cancer Plan. We are working on plans to develop a
better method of reaching survivors, determining their needs, and
implementing a process to meet those needs. If you are interested,
I’d like to hear
from you.
Survivor's Resources
(Links)
American Cancer Society
(ACS)
www.cancer.org
This organization has a presence in most communities across the
nation. A wealth of information is available for all types of cancer.
They have a Cancer
Survivors Network – www.acscsn.org
Cancer Care, Inc.
www.cancercare.org
A national organization that offers free support, information and
financial assistance.
Center for Disease Control & Prevention (CDC)
www.cdc.gov/cancer/index
Lot's of information and links.
National Cancer Institute (NCI)
cancer.gov
The government agency that works as an information clearing house
for all types of cancer. They have an Office
of Cancer Survivorship – dccps.nic.hih.gov/ocs/default.html
National Coalition for Cancer Survivorship
(NCCS)
www.canceradvocacy.org
A network of groups and individuals that offer support for survivors
and their families.
The Lance Armstrong Foundation (LAF)
www.laf.org
Their goal is to enhance the quality of life for survivors. They have
helped to draft the National Action Plan of Cancer Survivorship.
The Leukemia & Lymphoma Society (LLS )
www.lls.org
Created over 50 years ago, their mission is to find a cure for leukemia,
lymphoma and other blood-related cancers and to improve the quality
of life for patients and their families.
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