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The Changing Face of Cancer

in Iowa

These are the faces of cancer in Iowa. Real Iowans. A mother, a daughter, a grandpa, a brother and a neighbor.

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Total New Cases = 441,874Total Deaths = 195,051 Source: SEER*Stat version 6.5.2

MALIGNANT CANCERS AND CANCER DEATHS,1975-2006

“You have cancer” are the words some 16,000 Iowans will hear during 2009. They will join more than 117,000 people in the state already living with the disease. By the end of 2009, family members, friends and co-workers will mourn the deaths of 6,300 Iowans from cancer. The Iowa Legislature commissioned the original Face of Cancer in Iowa report in 2001. This report is an update of the progress made in comprehensive cancer control efforts since that time. The original study committee that developed the Face of Cancer in Iowa were the founding members of the Iowa Consortium for Comprehensive Cancer Control, now called the Iowa Cancer Consortium (ICC). The ICC was created in response to the Face of Cancer in Iowa report and the overwhelming need for an organization to coordinate the efforts of those fighting cancer across the state. Progress has been made. This report provides detailed information for the top 4 cancer sites in Iowa and adds a new look, one of the face of a survivor.

The Changing Face of Cancer in Iowa

Every county in Iowa is affected by cancer.

1

Cancer accounts for one of every four deaths in the state. It is currently the

second leading cause of death in Iowa but is predicted to soon become the number one cause of death in Iowa, surpassing heart disease.

Heart Disease Deaths versus Cancer Deaths, Iowa, 1970-2006(Source: SEER*Stat, version 6.5.2)

(Rates are crude and expressed per 100,000)

0

50

100

150

200

250

300

350

400

450

500

1970

1972

1974

1976

1978

1980

1982

1984

1986

1988

1990

1992

1994

1996

1998

2000

2002

2004

2006

Year

Rate

Cancer

Heart Disease

Estimated Lives Saved from Cancer Death, Iowa, 1997-2006*

64

43

63

31

64

30

63

46

64

48

64

04

64

73

64

69

63

40

64

53

63

59

0 192134 253

181 264230 298

477417 576

6000

6200

6400

6600

6800

7000

7200

1994

-199

619

9719

9819

9920

0020

0120

0220

0320

0420

0520

06

Year

Exp

ecte

d n

um

ber

of

dea

ths* Lives saved

Observed deaths

Total lives saved = 3,022

* Computed using indirect standardization with sex- and age-specific rates for 1994-1996 as the standard

2

Cancer Site Deaths 2002-2006

New Cases 2002-2006

Current Survivors

Lung and Bronchus 8,887 11,496 3,800

Colon and Rectum 3,415 9,687 14,100

Breast, female 2,239 10,879 25,700

Prostate 1,883 10,735 20,600

Pancreas 1,799 1,905 300

Non-Hodgkin Lymphoma 1,385 3,440 4,500

Ovary 892 1,195 1,800

Kidney and Renal Pelvis 858 1,158 1,200 Brain and other nervous system 828 2,584 3,000

All Cancer Sites 32,094 78,809 117,000

Esophagus 828 908 350

Age 14.9% of Iowa’s population is over the age of 65. Iowa ranks 4th in the nation in its percentage of residents over the age of 65. 54% of new cancers occur in persons 65 and older.

28%

11%

6%6%7%

42%Lung 28%

Colorectal 11%

Female Breast 7%

Prostate 6%

Pancreas 6%

Other Sites 42%

Cancer Deaths 2002-2006

The Burden of Cancer in Iowa

3

Iowa’s population is aging. Iowa ranks 4th nationally for residents over the age of 65. Nearly 14 percent of Iowans over the age of 18 are smokers. 64 percent of Iowans are overweight or obese. Fewer than 1 in 5 Iowans eat the USDA recommended five or more servings of fruits and vegetables daily.

Iowa is doing something about cancer! Together we can do even more! Since its inception in 2002, the 250 partners of the Consortium have worked to: Reduce the use of tobacco Promote use of recommended screening tests Encourage participation in Live Healthy Iowa Connect Iowans to available resources while undergoing treatment, and Enhance the quality of life of survivors Iowa is a leader in comprehensive cancer control efforts and received the national C-Change Implementation Award for exemplary implementation of a state cancer plan. To ensure positive advances for the future of cancer in Iowa the you can… Continue your leadership to support funding of comprehensive cancer control Join the Iowa Cancer Consortium Use your influence to encourage healthy lifestyles and preventive factors, and promote early screening and detection Model good cancer prevention and have early detection tests Promote cancer research, and Support Iowans who participate in clinical trials BAD NEWS FOR IOWA Research is promising but limits in research funding …. Impact to cancer workforce

Risk Factors for Cancer in Iowa TODAY

Doing Something About Cancer NOW

FUTURE of Cancer in Iowa

4

Lung Cancer

Lung cancer is the leading cause of cancer death for both men and women. More people die of lung cancer than of colon, breast and prostate cancers combined. Tobacco use is the most important risk factor for lung cancer.

GOOD NEWS FOR IOWA Cigarette Excise Tax increased to $1.36

ranks Iowa 22nd nationally 2008 Iowa Smoke Free Air Act Lung cancer rates can be lowered by re-

ducing the use of tobacco products

BAD NEWS FOR IOWA Tobacco use remains one of the leading causes of cancer death Death rates increased for lung cancer in

the first half of this decade.

Late Stage Rate for Lung Cancer, Iowa 2000 - 2005

Lung Cancer Mortality Rates, 1994-2006(Rates are age-adjusted to 2000 US Standard Population)

40

42

44

46

48

50

52

54

56

58

94 95 96 97 98 99 0 1 2 3 4 5 6

Lung Cancer

Iowa 2010 Goal

Year

Rate per 100,000 For 2006, N = 1,714

M:F ratio = 1.4:1

5

If you call 17-year-old Jess Knobloch’s cell phone, you’ll hear the ringtone – Cow-girls don’t cry; ride, baby ride – while you wait. Jess’s future is as bright as her personality, but someone she loves will not “ride” by her side to see her realize her dreams. Jess’s mother, Kathy Knobloch, was diagnosed with lung cancer on the last day of Jess’s freshman year. She died the very next year. According to Jess, her mother was independent, laid back, and “really cool.” Even through her year-long battle with cancer, “she was always smiling, no matter the pain.” Jess will never forget how her hometown of Rock Rapids came together to support her and her older sister. She’ll also never forget that she would still have her mother today, had it not been for cigarettes. “In this town everyone knew what Mom went through,” explains Jess, who now speaks out about the dangers of tobacco use. Since her mother got sick, several of Jess’s school friends have quit smoking. As her ringtone says, Jess knows that it’s gonna hurt every now and then, but she does what she can to get her message out. “Smoking took away my best friend, and that’s something I live with every day,” says Jess. “If I could do anything to keep someone from going through what my mom went through, I would.”

Jess Knobloch, Rock Rapids, Iowa

6

Colorectal Cancer

3,415 Iowans died of colorectal cancer from 2002-2006.

Colorectal cancer is cancer of the colon or rectum. It is one of the most preventable cancers because it develops from polyps that can be removed before they become cancerous.

Late Stage Rate for Colorectal Cancer, Iowa 2000 - 2005

Colorectal Cancer Mortality Rates, 1994-2006(Rates are age-adjusted to 2000 US Standard Population)

12

14

16

18

20

22

24

26

94 95 96 97 98 99 0 1 2 3 4 5 6

Colorectal Cancer

Iowa 2010 Goal

Year

Rate per 100,000

For 2006, N = 668 M:F ratio = 0.9:1

7

"June 4, 2008, is the day that saved my life," says Tammy Lyle. Although just 38, this was the day Tammy had a colonoscopy. "I only got the screening to please my big sister, Angie," says Tammy, with a laugh. Because some family members have had colon cancer, Angie had just gotten the test herself and was having some polyps removed and tested for cancer, so Tammy scheduled her screening. Both sisters’ tests came back positive for colon cancer. “I was diagnosed with Stage III, so it was a blessing that I had gone in for my screening. I hadn't really shown any symptoms," says Tammy.

Although she was scared, Tammy says that her doctors were very helpful. The referral process was “cut and dried,” and her doctors guided her throughout the whole journey. Through six months of chemotherapy, surgery and six weeks of radiation, Tammy and Angie faced and fought cancer together. Tammy appreciates how supportive everyone has been. Her employer let her work from home, allowing her to recover fully. Now she is eager to get back into the swing of things. “Becoming involved with my community again will be part of my healing process,” Tammy adds.

Tammy Lyle, Des Moines, Iowa

BAD NEWS FOR IOWA Iowa ranks 41st nationally for consumption of 5 fruits and vegetable servings per day which is a protective

factor for colon cancer Underinsured Iowans face large screening co-pays

GOOD NEWS FOR IOWA Iowa Get Screened Program Iowa Department of Public Health CDC Screening Program Promotion of other low and reduced cost screenings available at CancerIowa.org Rural, African American, and Latino screening campaigns developed specifically for Iowans 8

BAD NEWS FOR IOWA African American women are less likely to be diagnosed with breast cancer at an early stage, and they are more likely to die from the disease. For many women the inability to pay for service remains a barrier to receiving cancer treatment

Female Breast Cancer

2,239 of female Iowans died of breast cancer from 2002-2006.

GOOD NEWS FOR IOWA If found early and treated before it spreads, the five-year relative survival rate for breast cancer is 98 percent Iowa Department of Public Health Breast and Cervical Cancer Early Detection Program Deaths from breast cancer have been decreasing over the past ten years

Female Breast Cancer Mortality Rates, 1994-2006(Rates are age-adjusted to 2000 US Standard Population)

16

18

20

22

24

26

28

30

32

94 95 96 97 98 99 0 1 2 3 4 5 6

Female Breast Cancer

Iowa 2010 Goal

Year

Rate per 100,000

For 2006, N = 446

Late Stage Rate for Breast Cancer, Iowa, 2000 - 2005

9

"I've been very lucky," says Jan Davitt, with a laugh. Jan, 67, is an 18-year breast cancer survivor. When first diagnosed, she fought back with a mastectomy and chemotherapy. However, twelve years later, breast cancer had spread to the bone. Now she is one of the many Iowans who is living with cancer. Current treatments include an intravenous medication to keep her bones strong, oral chemotherapy, and an anti-hormonal shot to prevent cancers from forming. She has also taken radiation treatment. "I really don't dwell on it,” says Jan. “I'm still able to work and go on

with my life as usual if I take a couple of short rests during the day." A big part of Jan’s life is volunteering. She mentors women who are newly diag-nosed with breast cancer, or who have recently undergone mastectomy. When she was diagnosed, she met a lot of women who were going through a similar situation, and talking with them really helped. "During my first year with cancer I often wondered if I’d be alive in a year. But I don't really think about it much anymore. I just try to enjoy living each day,” says Jan. “I heard recently that people with chronic illnesses may live longer than others because they and their doctors are vigilant about watching their health.”

10

Jan Davitt, Harlan, Iowa

GOOD NEWS FOR IOWA Surpassed Healthy Iowans 2010 Goal for decreasing the number of deaths due to prostate cancer BAD NEWS FOR IOWA African American men are more likely to develop prostate cancer than men of other races and

ethnicities

Prostate Cancer

Prostate Cancer Mortality Rates, 1994-2006(Rates are age-adjusted to 2000 US Standard Population)

20

22

24

26

28

30

32

34

36

38

40

94 95 96 97 98 99 0 1 2 3 4 5 6

Prostate Cancer

Iowa 2010 Goal

Year

Rate per 100,000

N = 366

Late Stage Rate for Prostate Cancer, Iowa, 2000 - 2005

1,883 Iowans died of prostate cancer from 2002-2006.

11

When Terry Stock of Blue Grass was diagnosed with a neuroendocrine carcinoma of the prostate, his doctor said the best chance for survival was a drug called sandostatin. This drug would hold Terry’s cancer at bay until he and his doctors found the best way to treat it. There was one hitch. His insurance company wasn’t going to cover the $6,000 per month cost. “My doctors had given me hope for surviving,” says Terry, “but it seemed to be yanked away when I was denied the medicine.” After many sleepless nights for Terry and his family, a human resources director at his wife’s workplace was able to secure coverage for this lifesaving treatment. Eventually, Terry underwent surgery and received chemotherapy, and today he enjoys every single day he spends with his family and friends. “I know that a lot of people wouldn’t have had someone in their corner the way I did,” Terry says. “What do they do when they can’t get the medical help they need?” To help ensure that everyone has the same chance of survival as he did, Terry has spoken out on the issue. “I want to make sure that everybody gets the best health care available so that we can continue to fight and beat this disease.”

Terry Stock, Blue Grass, Iowa

12

5-year Relative Survival, All Cancer Sites, 1994-2003

55

60

65

70

1994-98 1995-99 1996-00 1997-01 1998-02 1999-03

All sites

Iowa 2010 Goal

Years of Diagnosis

Rate per 100

Estimated Iowa Cancer Survivors by Top Ten Cancer Mortality Sites January 1, 2006

Cancer Type Survivors

Lung and Bronchus 3, 800

Colon and Rectum 14,100

Breast, female 25,700

Prostate 20,600

Pancreas 300

Non-Hodgkin Lymphoma 4,500

Ovary 1,800

Brain and Other Nervous System 1,200

Kidney and Renal Pelvis 3,000

Esophagus 350

Other Sites 41,650

TOTAL 117,000

Survivors

An estimated 117,000 Iowans are living with cancer today.

13

“You need to lose a little weight, you should increase your daily exercise, and I’m a little concerned that your PSA is elevated.” That’s what Ron Nielsen of Johnston heard from his doctor in 2000, when he went for his annual physical. Ron was about to become an expert on a subject about which he previously knew very little – prostate cancer. “All of this happened pretty fast,” says Ron. “I didn’t even know that PSA stood for prostate specific antigen, but I soon found out.” Ron stresses that “finding out” is important in fighting cancer. A diagnosis can be shocking and confusing, but resources are available in Iowa to help people understand their disease, and their options for treating it. After learning as much as he could by consulting with doctors and experts, Ron decided that radiation was his best option. Besides the medical lessons he learned, the emotional lessons were equally important. “At

first, I didn’t share my experience with anyone outside of family,” Ron says. “When I found out my wife and daughter were telling everyone, anyway, I felt the support of my community, and I knew I needed that.” Ron now has his PSA checked regularly, eats healthy foods, and exercises so he doesn’t have to worry about himself, but he does worry about others who may not have access to the same resources as he did. “The Iowa Cancer Consortium is doing a lot to keep people aware,” says Ron. “We need to make sure everyone knows what’s available.”

GOOD NEWS FOR IOWA Survivorship: ICC programming through partner organizations Higher Ground Cancer Patients- flood relief Mentors Assisting and Preparing Survivors program Palliative Care Patient Education DVD Iowa-Specific Clinical Trials Resource Guide

BAD NEWS FOR IOWA Research is promising but research funding is limited Cancer workforce impact

14

Ron Nielsen, Johnston, Iowa

Cancer Survivors

Ron Nielsen was featured in the original Face of Cancer report and as a cancer survivor has made significant contributions to cancer control efforts in Iowa.

Acknowledgements

Data Charles Lynch, MD, PhD, State Health Registry of Iowa

Michele West, PhD, State Health Registry of Iowa

Iowa Cancer Narratives Kathy Holdefer, American Cancer Society

Katrina Holdefer

Photos Jan Davitt photo by Jamie Byrnes, Harlan

Jess Knobloch photo by CJay Photo, Haywarden

Special thanks to: Jess Knobloch Tammy Lyle Jan Davitt Terry Stock Ron Nielsen

Members of the Iowa Cancer Consortium Iowa Department of Public Health Comprehensive Cancer Control Program

and All Iowans who have been touched by cancer

Cancer Mapping Methodology All rates are indirectly standardized by age and sex when appropriate, and smoothed using adaptive spatial filtering– a method that uses a grid of points across the study area and calculates rates for each grid point by pulling in observations until a statistically reli-able rate can be calculated. Each rate is based on the closest 50 expected cases on a grid that is densified in urban areas to increase geographic detail. Red areas indicate higher rates than expected and blue areas indicate lower rates than expected, given the state-wide rate. The highest and lowest third of the state are colored, while no color is shown for the middle third. Data Sources: Cancer incidence data from the State Health Registry of Iowa. Cancer mortality data from the Bureau of Vital Sta-tistics at the Iowa Department of Public Health. 1:100,000 Digital Raster Graphic from the Iowa Geographic Image Map Server hosted by Iowa State University. County borders, incorporated area locations, and interstate highways from the Natural Resources GIS Library hosted by the Iowa Department of Natural Resources and the US Geological Survey. Maps were created collaboratively by Kirsten Beyer, Zunqiu Chen, David Haynes, Gerald Rushton, and Chetan Tiwari at the Uni-versity of Iowa Department of Geography, June 2008. The preparation of these maps was made possible by cooperative agreement #U58DP000794-01 from the Centers for Disease Control and Prevention through the Iowa Department of Public Health Comprehen-sive Cancer Control Program.