Commonly Asked Questions and Answers (Q&A)

1. What is the STEED Study?
STEED stands for Servicemen's Testicular tumor Environmental Endocrine Determinants Study. The purpose of the STEED Study is to determine what causes testicular cancer and why testicular cancer is the most common cancer among young men, including soldiers, sailors, airmen, and marines, in the United States. About 2,400 military servicemen and their mothers will be invited to participate in the STEED study.

2. What is testicular cancer?
Cancer that develops in a testicle [a male genital gland] is called testicular cancer. Although a rare cancer, testicular cancer is the most common cancer in men between the ages of 15 and 35 years old.

3. Why are you contacting me?
We would like to ask you to participate in the study. Your participation will help us learn about the potential causes of the cancer.

What will I have to do if I participate in the STEED Study?
Our project staff will contact you to conduct the following study activities:

• Sign a Participation Consent Form.
• Complete 1 telephone interview at a time that is convenient to you.
• Collect 2 mouthwash samples (with easy Do-It-Yourself instructions and collection kits).
• Allow access to your DoD serum (blood) sample (Case/Control)
• Allow access to your DoD medical records (cases only)
• Allow access to your pathology reports (cases only)
• Allow access to your tumor tissue sample (cases only).

4. Do I have to sign the Participation Consent Form?
You must sign the consent form to participate. However, your participation is strictly voluntary and you may stop your participation at any time.

5. What is the interview about?
The interview is about your health, occupation, and personal and family history. Our project staff will call you to schedule an appointment for the interview. You may refuse to answer any questions during the interview.

6. Are results confidential?
Yes. All the information will be kept confidential. A Certificate of Confidentiality is used to protect the privacy of the information.

7. Who can I contact for more information?
Our project staff will call you in a few days after you have received this information packet. If you want more information now or after talking with our project staff, you may call our toll-free number 1-877-810-9530 ext. 509 and leave a message with your name, area code and phone number so we can call you back.

8. Who is funding the study and who are the researchers?
This study is funded by the National Cancer Institute (NCI). The researchers are Dr. Katherine McGlynn (NCI, mcglynnk@mail.nih.gov) and COL Ralph L. Erickson (DoD). The NCI has contracted with a non-profit research company, Battelle Memorial Institute (Battelle), to help conduct this study. The Battelle Project Director is Christopher Lyu (919-544-3717, ext. 117).

9. Why do you need to talk to my mother?
Because we don't know the cause of testicular cancer, we want to talk to each participant's mother to see if there's a link between the development of testicular cancer and the different things a person was exposed to in the uterus.

10. What is a testicle?
The testicles, also called testes or gonads, are the male sex glands. They are located behind the penis in a pouch of skin called the scrotum. The testicles produce and store sperm, and they also serve as the body's main source of male hormones. These hormones control the development of the reproductive organs and other male characteristics, such as body and facial hair, low voice, wide shoulders and libido.

11. What causes testicular cancer?
Right now researchers don't know what causes testicular cancer. However, research studies like the STEED Study may help find out what causes testicular cancer. By talking to men who have testicular cancer and by also talking to men who do not have the disease, researchers may be able to discover why some men are more likely than others to develop testicular cancer. If researchers can learn what causes the disease, they may be able to suggest ways to prevent it in the future.

12. What does it mean to have undescended testes?
Undescended testes are a condition where one or both testicles fail to move from the abdomen, where they develop before birth, into the scrotum. Research has shown that men with this condition are more likely than other men to develop testicular cancer.

13. Do I have testicular cancer?
We are talking to men who have testicular cancer, as well as men who do not have testicular cancer. Your participation in the STEED Study may help us figure out why some men get testicular cancer, while other men don't get testicular cancer.

14. Why are you talking to men in the military?
Because (1) there is a large concentration of young men in the military, (2) the study can rely on the Department of Defense Tumor Registry as a source of identifying people with the cancer, and (3) the DoD maintains other resources such as blood samples and medical records useful to the study. Your participation will provide an important contribution to the success of this study. The results of this study may provide new information on the potential causes of testicular cancer and may benefit not only military servicemen but also the general public in the future.

15. How do I know if I have testicular cancer?
Where can I get more information on testicular cancer?
If you have concerns or questions about your personal health, you should talk with your health care provider. You may also visit the National Cancer Institute's website: www.cancer.gov or call the the National Cancer Institute's Cancer Information Service at: 1-800-4-CANCER (1-800-422-6237)

16. Do I have to participate in the STEED Study?
Your participation in the STEED Study is voluntary. If you choose to participate, you may skip any interview question you don't want to answer, and you can stop your participation in the STEED Study at any time even after you have signed the participation consent form.

17. What is mouthwash sample collection?
The purpose of mouthwash sample collection is to collect some loose cells from your mouth. The collection is easy. You simply use the Scope mouthwash provided by us to rinse inside your mouth for 45 seconds, and spit the mouthwash into a container we send to you. The samples will be analyzed for clues to possible genetic causes of the cancer. Once the testing has been completed, the remaining samples will be destroyed.

18. Why do you need access to my serum sample?
The researchers will analyze the participant's serum (blood) sample for clues to possible genetic causes of the cancer. If you agree to participate, the serum sample will be provided by the DoD Serum Repository. There is no need to collect a blood sample from you.

19. Can I get my test results? (Blood/Mouthwash)
The test results are intended for research purposes only and are not meaningful in a clinical setting. The test results will not be shared with anyone beyond the study investigators. The study will not routinely provide these test results to participants, but, if a participant wishes to receive the results, he (she) may contact the principal investigator.

20. How do you know I have testicular cancer?
The STEED Study is being sponsored by the National Cancer Institute and the Department of Defense. All potential study participants with testicular cancer were identified by the Defense Medical Surveillance System (DMSS).

21. How did you get my name and phone number?
The STEED Study is being sponsored by the National Cancer Institute and the Department of Defense. All potential participants' contact information was provided by the Department of Defense.

22. Who will have access to the information I tell you?
All of the information you share with the STEED Study will be kept strictly confidential. Only authorized STEED project staff will have access to the information you provide. The project has obtained a Certificate of Confidentiality from the U.S. Department of Health and Human Services. This certificate further protects the privacy of study participants.

23. Are there any risks or discomforts?
There are no risks or discomforts associated with the STEED Study. If the inside of your mouth is sensitive to mouthwash, the mouthwash sample collection may produce some mild discomfort. However, to collect the sample, you only have to rinse your mouth with mouthwash for about 45 seconds. Some of the interview questions may make you uncomfortable. However, you may refuse to answer any questions.

24. Are there any benefits?
There is no direct benefit for your participation. However, by participating in the STEED Study, you have the chance to contribute to scientific knowledge about testicular cancer that may help other men in the future.

25. Are there any costs?
Your participation in the STEED Study will not cost you anything.

26. Will I be paid to participate? For Active Duty Subjects As a token of our appreciation, you should have received a 60-minute pre-paid phone card in the information package we sent you. That's the only item that was allowed by the DoD for active duty servicemen.

For Non-Active Duty Subjects To thank you for the time and effort, we have sent you a 60-minute pre-paid phone card in the initial information package. If you agree to participate, we will send you a second package with the mouthwash samples collection kit and a $15 money order.

27. The study title is STEED (Servicemen's Testicular tumor Environmental Endocrine Determinants Study). What is Environmental Endocrine Determinants?
There are some artificial and naturally occurring chemicals in our environment that may affect the balance of regular hormonal functions in animals. These chemicals, also known as Endocrine Disrupting Chemicals or EDCs, may mimic the sex hormones estrogen or testosterone, thereby producing similar responses to them, or they may block the activities of estrogen or testosterone.