If you or someone you know is a young breast cancer survivor (YBCS) and would like to help plan the development of services for YBCS in Louisiana, Mississippi and Alabama please consider taking a short survey below. Your responses will also provide us with feedback about our website and information on how useful the resources have been in addressing the needs of YBCS.

Were you contacted by the Louisiana Tumor Registry (LTR) at LSU Health Sciences Center New Orleans School of Public Health to participate in the survey?


The purpose of the “Young Breast Cancer Survivors” study is to determine the needs of young breast cancer survivors (less than 45 years old). The results of this needs assessment will be used to help plan the development of these services. The investigators include Dr. Donna Williams, Dr. Denise Roubion-Johnson, Dr. Xiao-Cheng Wu, Lisa Smith and Michelle Lawrence at LSU Health Sciences Center New Orleans School of Public Health. You are invited to participate in this study because you are a woman younger than 45 who has been diagnosed with breast cancer.

You will be asked to complete a survey indicating how much certain physical, marital, sexual, and other issues have applied to you at any time since your breast cancer diagnosis. The survey includes summary scales and subscales from the Cancer Rehabilitation Evaluation System (CARES), which is a comprehensive assessment tool. The survey is expected to take 10 minutes and the identification (ID) number that was assigned to you at random by the Louisiana Tumor Registry (LTR) will be collected. An ID number is needed to ensure that the LTR does not contact and disturb you after you have completed the survey. All patient information will be kept confidential by the LTR and separate from your survey responses.

You participation is voluntary and the alternative is to not participate. Your refusal to participate will involve no penalty or loss of benefits to which you are otherwise entitled. You may choose to discontinue participation at any time or not answer a question without penalty or loss of benefits to which you are otherwise entitled, and your responses will remain anonymous. Nonparticipation or choosing to withdraw from the study will in no way jeopardize your relationship with this institution in the present or future. There will be no benefit in enrolling in this study, but future breast cancer patients may benefit from services designed as a result of the study. There will be no costs to you as a result of participation in this survey.

All survey data from everyone who took part in the study will be combined, ensuring anonymity. It may be possible for someone to recognize your information even without your name, but this is unlikely. There may be some anxiety or nervousness during the testing process. No direct risks are anticipated in the study.

The results of the study may be disclosed to the funding agency, the Centers for Disease Control and Prevention. If the results of the study are published, the privacy of the participants will be protected and they will not be identified in any way. The sponsor (Centers for Disease Control and Prevention), the LSUHSC-NO Institutional Review Board, and the investigators mentioned previously and their staff may inspect and/or copy your study related records for quality assurance and data analysis.

Should you have any questions, concerns, or want to be more fully informed about the nature of the research and the results of the study, please do not hesitate to contact us on weekdays from 8:00 a.m.- 4:30 p.m. at 1-888-599-1073, or at our 24 hour number, (504) 495-5227. Also, you can reach the graduate assistant, Michelle Lawrence , by email at mlawr1@lsuhsc.edu. If you have questions about your rights, or other concerns, you may contact the Chancellor of the LSU Health Sciences Center New Orleans at (504) 568-4801.

Clicking on the “agree” button below indicates that:

• You have read the above information
• You voluntarily agree to participate
• You are a young breast cancer survivor (less than 45 years old at the time of breast cancer diagnosis)
• You are at least 18 years of age

If you do not wish to participate, please decline participation by clicking on the “disagree” button.

ELECTRONIC CONSENT: Please select your choice below.

The survey is made up of questions that other patients have suggested are important, some of which are personal. Please record your age, race, and location and then begin by reading each statement. After reading each statement, indicate how much it has applied to you at any time since your breast cancer diagnosis by clicking the "Not at all," "A little," "A fair amount," "Much," or "Very much" button. Some sections begin with a question, and it may not apply to you. If you click the “yes” button, you will be directed to corresponding statements. If you click the “no” button, you will be directed to the next section. Take as much time as you need.

Schag, C. A., & Heinrich, R. L. (1990). Development of a comprehensive quality of life measurement tool: CARES. Oncology (Williston Park), 4(5), 135-8. © CARES Consultants 1988. Available from http://www.cancer.ucla.edu/Index.aspx?page=1221


1. I do not have the energy I used to

How much have each of the following applied to you at any time since your breast cancer diagnosis?

2. I have difficulty planning activities because of the cancer or its treatments

How much have each of the following applied to you at any time since your breast cancer diagnosis?

3. I find that the cancer or its treatments keep me from working

How much have each of the following applied to you at any time since your breast cancer diagnosis?

4. I find that cancer or its treatments interfere with my ability to work

How much have each of the following applied to you at any time since your breast cancer diagnosis?

5. I find that my clothes do not fit

How much have each of the following applied to you at any time since your breast cancer diagnosis?

6. I am embarrassed to show my body to others because of my illness

How much have each of the following applied to you at any time since your breast cancer diagnosis?

7. I am uncomfortable with the changes in my body

How much have each of the following applied to you at any time since your breast cancer diagnosis?

8. I frequently feel anxious

How much have each of the following applied to you at any time since your breast cancer diagnosis?

9. I frequently feel overwhelmed by my emotions and feelings about the cancer

How much have each of the following applied to you at any time since your breast cancer diagnosis?

10. I have difficulty sleeping

How much have each of the following applied to you at any time since your breast cancer diagnosis?

11. I have difficulty concentrating

How much have each of the following applied to you at any time since your breast cancer diagnosis?

12. I have difficulty remembering things

How much have each of the following applied to you at any time since your breast cancer diagnosis?

13. I have difficulty asking friends or relatives to do things for me

How much have each of the following applied to you at any time since your breast cancer diagnosis?

14. I worry about whether the cancer is progressing

How much have each of the following applied to you at any time since your breast cancer diagnosis?

15. I worry about not being able to care for myself

How much have each of the following applied to you at any time since your breast cancer diagnosis?

16. I do not feel sexually attractive

How much have each of the following applied to you at any time since your breast cancer diagnosis?

17. I have financial problems

How much have each of the following applied to you at any time since your breast cancer diagnosis?

18. Have you looked for work since your breast cancer diagnosis?


19. I have difficulty finding a new job since I have had cancer

How much have each of the following applied to you at any time since your breast cancer diagnosis?

Are you single and not in a significant relationship?


20. I have difficulty meeting potential dates

How much have each of the following applied to you at any time since your breast cancer diagnosis?

21. I have difficulty telling a date about the cancer or its treatment

How much have each of the following applied to you at any time since your breast cancer diagnosis?

22. I am afraid to initiate a sexual relationship with someone

How much have each of the following applied to you at any time since your breast cancer diagnosis?

23. Do you want to be pregnant at any point in the future?


24. I worry about not being able to get pregnant

How much have each of the following applied to you at any time since your breast cancer diagnosis?

25. I worry about the effects pregnancy will have on breast cancer

How much have each of the following applied to you at any time since your breast cancer diagnosis?

26. I worry about the effects cancer treatment will have on pregnancy

How much have each of the following applied to you at any time since your breast cancer diagnosis?

27. Have you ever discussed fertility issues associated with breast cancer with a healthcare provider?


28. I worry about experiencing premature menopause

How much have each of the following applied to you at any time since your breast cancer diagnosis?

29. Have you ever discussed the relationship between breast cancer and menopause with a healthcare provider?


30. I am interested in genetic testing for the two breast cancer susceptibility genes (BRCA1 and BRCA2)

How much have each of the following applied to you at any time since your breast cancer diagnosis?

31. Have you ever discussed genetic testing for breast cancer with a healthcare provider?


32. I worry about my family members having a higher risk of breast cancer becuase of my breast cancer diagnosis

How much have each of the following applied to you at any time since your breast cancer diagnosis?

33. I have problems with sexual intimacy since my breast cancer diagnosis

How much have each of the following applied to you at any time since your breast cancer diagnosis?

34. I worry about my breast cancer spreading

How much have each of the following applied to you at any time since your breast cancer diagnosis?

35. I worry my breast cancer might come back

How much have each of the following applied to you at any time since your breast cancer diagnosis?

36. Have you attended a breast cancer support group since being diagnosed with breast cancer?


37. Prior to this survey, have you ever visited www.SurviveDAT.org, www.SurviveAL.org or www.SurviveMISS.org?


Please indicate what category describes your racial background

Thank you very much for your participation. If you have any questions, please contact Lisa Smith at (855) 394‐4032 (toll‐free) or (504) 568‐5848.

SurviveDAT is dedicated to enhancing the health and wellness of young breast cancer survivors in Louisiana. Our goal is to address the unique needs of these survivors through an online resource that includes an extensive list of community programs, support groups and services available locally and nationally. For more information, please visit WWW.SURVIVEDAT.ORG.

Contact Information:
Study Coordinator, Lisa Smith: 855-394-4032 (toll-free) or 504-568-5848
Principal Investigator, Donna Williams: 504-568-5875

If you are emotionally distressed or upset and feel you need assistance right now, please contact the American Cancer Society at 1‐800‐227‐2345 or visit www.cancer.org, day or night, for information and support.