Transcript of Live Chat with Evelyn Rojas of the Cancer Information Service
Tuesday, September 21, 2004

Evelyn_Rojas_CIS: The Cancer Information Service (CIS) is a program of the National Cancer Institute (NCI), the Nation's lead agency for cancer research. As a resource for information and education about cancer, the CIS is a leader in helping people become active participants in their own health care by providing the latest information on cancer in understandable language. Through the CIS toll-free telephone service (1-800-4-CANCER), callers speak with knowledgeable, caring staff who are experienced at explaining medical information in easy-to-understand terms. CIS information specialists answer calls in English and Spanish. The CIS serves deaf and hard of hearing callers through the toll-free TTY number (1-800-332-8615). Information Specialists also provide assistance to smokers through NCI's Smoking Quitline at 1-877-44U-QUIT.

Evelyn_Rojas_CIS: El Servicio de Información sobre el Cáncer (CIS) es un programa del Instituto Nacional del Cáncer (NCI), la agencia principal de la nación para la investigación sobre el cáncer. Como recurso de información y educación sobre el cáncer, el CIS es un líder en ayudar a la gente para que participe activamente en el cuidado de su propia salud al proporcionarle la información más reciente sobre el cáncer en un lenguaje fácil de entender. Por medio del servicio telefónico gratuito del CIS (1-800-4-CANCER), las personas que llaman pueden hablar con personal preparado y atento que tiene experiencia en explicar información médica en términos fáciles de entender. Los especialistas en información del CIS contestan llamadas en inglés y en español. El CIS da servicio a personas sordas o con problemas de audición, por medio de su número telefónico (1-800-332-8615) para llamadas gratuitas con equipo TTY. Los especialistas en información proporcionan también asistencia a quienes fuman por medio del teléfono del Instituto Nacional del Cáncer para dejar de fumar 1-877-44U-QUIT.

Evelyn_Rojas_CIS: It is my great pleasure to be here with you today to discuss life after cancer treatment. I will answer all questions in the language they are asked in. Lo agradezco mucho estar aqui con Uds. para discutir la vida despues del tratamiento de cancer. Voy are dar las respuestas para todas las preguntas en la lengua del participante.

NYPL: Welcome to our online chat with Evelyn Rojas, Partnership Program Coordinator for the Cancer Information Service. CIS is the information and education resource of the National Cancer Institute. Welcome, Evelyn!

Evelyn_Rojas_CIS: Thank you. I am glad to be here.

NYPL: Evelyn, can you tell us a little bit about the Cancer Information Service? Where are you located, and what are some of the services you offer?

Evelyn_Rojas_CIS: The Cancer Information Service (or CIS) has a network of 14 regional offices, serving the United States, Puerto Rico, the U.S. Virgin Islands, and the Pacific Islands. For over 25 years, the Cancer Information Service has provided the latest and most accurate cancer information to patients and families, the public, and health professionals by: interacting with people one-on-one through its Information Service, working with organizations through its Partnership Program, participating in research efforts to find the best ways to help people adopt healthier behaviors, providing access to NCI information over the Internet, and providing smoking cessation assistance through the Information Service and supporting regional tobacco control efforts through its Partnership Program.

Evelyn_Rojas_CIS: I am currently located at Memorial Sloan-Kettering Cancer Center in New York, NY. I am a member of a 5-person Partnership Program staff, located strategically throughout the state. Our CIS covers the state of New York

NYPL: What does follow-up care involve, and why is it important?

Evelyn_Rojas_CIS: The main purpose of follow-up care is to check if your cancer has returned (recurrence) or if it has spread to another part of your body (metastasis). Follow-up care can also help in: finding other types of cancer, and spotting side effects from treatment now or that can develop years after treatment. Follow-up care means seeing a doctor to get regular medical checkups. At these visits, your doctor will: review your medical history and examine your body.

NYPL: Evelyn, it's not always easy to talk with your doctor. What do you think goes wrong, and do you have any suggestions or tips on making the conversation more productive?

Evelyn_Rojas_CIS: It is not always easy to talk with your doctor. Sometimes, he or she uses terms you do not know. When this happens, it is important to stop and ask the doctor to explain what the words mean. You may be afraid of how you will sound to the doctor, but having questions is perfectly normal. Talking with your doctor is important. Both of you need information to manage your care. Telling the doctor about your health and asking questions helps both of you do your "jobs" well. People may want to ask the doctor these questions about follow-up care: How often should I have a routine visit? What follow-up tests, if any, should I have? How often will I need these tests? What symptoms should I watch for? If I develop any of these symptoms, whom should I call? Many patients find it helpful to write these questions down and take notes, or tape their discussions with the doctor to refer to at a later time.

NYPL: What are some types of questions should people ask their doctor(s) about follow-up care?

Evelyn_Rojas_CIS: At your first follow-up visit, ask your doctor/health care team about: the tests and follow-up care you need, and how often you will need them; the kinds of physical problems you may have from your cancer treatment and what you can do to prevent, reduce, or solve them; the potential long-term effects of treatment and the warning signs that you might have them; the warning signs that cancer may be coming back and what to do if you see them; and fears you may have about follow-up care. You will need to decide which doctor will provide your cancer follow-up care and which one(s) will provide other medical care. For follow-up cancer care, this may be the same doctor who provided your cancer treatment. For other medical care, you can continue to see your family doctor or medical specialist as needed. Keep your own set of records about the follow-up care you get.

NYPL: There was an article in the NY TImes today about going back to your "regular" doctor and lack of care. What of medical records and information should a person keep and what should they take back to their doctor?

Evelyn_Rojas_CIS: Make sure to get a copy of your cancer treatment records or a summary. (You may be charged for these.) By keeping your records up to date, you'll have enough information to share with any new doctors you may see. If you don't keep a copy, your records might be spread among many doctors' offices, and key facts about your cancer history could be lost. Here are the key types of records you'll want to keep: The type of cancer you were treated for When you were diagnosed Details of all cancer treatment (including all surgeries; names and doses of all drugs; sites and total amounts of radiation therapy; and places and dates of treatment) Key lab reports, pathology reports, and x-ray reports Contact information for all health professionals involved in your treatment and follow-up care Any problems that occurred after treatment Information on supportive care you had (such as special medications, emotional support, and nutritional supplements)

twinkly_winkly_star I know someone who was diagnosed with cancer several years ago. He had surgery and underwent chemotherapy. He's very reluctant to discuss this experience, and tells very few new people he meets. Can this type of denial be a healthy coping mechanism, or is it better to talk about it?

Evelyn_Rojas_CIS: Each person's experience with cancer is different and unique, and the feelings, emotions, and fears that your friend has are unique as well. The values he grew up with may affect how he thinks about and deals with cancer. Some people may feel they have to be strong and protect their friends and families. Others seek support from loved ones or other cancer survivors or turn to their faith to help them cope. Some find help from counselors and others outside the family, while others do not feel comfortable with this approach. Whatever he decides, it is important that he do what's right for him and not compare himself to others.

Evelyn_Rojas_CIS: Being open and dealing with their emotions helps many people feel less worried. People have found that when they express strong feelings like anger or sadness, they are more able to let go of these feelings. Some sort out their feelings by talking to friends or family, other cancer survivors, or a counselor. Of course, if he prefers not to discuss his cancer with others, he should feel free not to. He can still sort out his feelings by thinking about them or writing them down on paper. Thinking and talking about how someone feels after cancer treatment can be hard. Some people just want to move on. They put the thought of cancer and all that goes with it out of their minds. While it is important not to let cancer "rule your life," it may be hard to do. If someone finds that cancer is "taking over" their life, it may be helpful for them to find a way to express their feelings.

NYPL: What is a "wellness plan" and how important is it to develop one?

Evelyn_Rojas_CIS: After cancer treatment, many survivors want to find ways to reduce the chances of their cancer coming back. Some worry that the way they eat, the stress in their lives, or their exposure to chemicals may put them at risk. Cancer survivors also find that this is a time when they take a good look at how they take care of themselves and their health. This is an important start to living a healthy life after cancer.

Evelyn_Rojas_CIS: When you meet with your doctor about follow-up care, you should ask about developing a wellness plan that includes ways you can take care of your physical, emotional, social, and spiritual needs. You may not be used to talking with your doctor as a partner in planning for your health, so it may be hard for you at first, but it is very important that you do it. The more you do it, the easier it will become.

Evelyn_Rojas_CIS: Research is just beginning to show what people can do to lower their risk of getting certain cancers. But we don't yet know why cancer comes back in some people and not others. Making changes in the way you eat, exercise, and live your life may not prevent your cancer from coming back. However, making these changes can help you feel better and may also lower your chances of developing other health problems.

Greg790: What's the best way to support someone after their treatment?

Evelyn_Rojas_CIS: You can let them know that you are there, for whenever they are ready to talk, and you can offer help with things that might make their lives a little easier. There are many ways to provide support, depending on your relationship with the cancer survivor. If you are a family member and the survivor is a mom, maybe babysitting could help...just remember that the survivor is still learning how to handle things and may not immediately accept your help. Just continue to be open.

julie: I feel like the weight of the diagnosis is always hanging over me and sometimes it is hard to get beyond it. I am grateful but still have a lot of emotional issues - any suggestions?

Evelyn_Rojas_CIS: When you were diagnosed, you may have put certain issues aside for a while, such as concerns about family, work, or finances. Now that treatments are over, these issues may begin to resurface. Talk to your health care provider. Perhaps a survivorship group would help or individual counseling. Support groups can have many benefits. Some research shows that joining a specific type of support group improves quality of life and enhances survival.

NYPL: Evelyn, we're almost out of time. Is there anything else you'd like to add?

Evelyn_Rojas_CIS: When treatment ends, people often expect life to return to the way it was before they were diagnosed with cancer. This rarely happens. You may have permanent scars on your body, or you may not be able to do some things you once did easily. Others may think of you--or you may view yourself--as being somehow different. Your new "normal" may include making changes in the way you eat, the activities you do, and your sources of support, all of which are discussed the National Cancer Institute's "Facing Forward: Life After Cancer Treatment."

NYPL: Can you repeat your contact information and the 1-800 number?

Evelyn_Rojas_CIS: You can contact the CIS at 1-800-4-CANCER (1-800-422-6237). You can also get information from NCI's website at www.cancer.gov. On the website, you can send an email to get more information, or use LIVEHELP, and chat online with an information specialist in real time.

Evelyn_Rojas_CIS: Thank you for having me. I hope that it was informational for all of you.

NYPL: Evelyn, thank you for taking time to speak with us today! We very much appreciate it!

Evelyn_Rojas_CIS: My pleasure!