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September 2009 Newsletter:  Becoming a Cancer Advocate
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I know you are feeling overwhelmed right now. You are searching for direction, answers, hope. I am here to help. Each month, I will send you some information and advice to try to make your journey a little more manageable…

Coping with a Cancer Diagnosis

Facing a cancer diagnosis is a challenge that no one should have to face alone. When you are told you have cancer, the diagnosis affects you and your family and friends. No one handles a cancer diagnosis in the same way. After you find out you have cancer, you may feel afraid, anxious, angry or overwhelmed. You may even feel numb or confused. It might be hard to listen to what the doctor is saying or remember what people tell you to do. You probably have many questions and may not know where to begin or how to cope. Your own personal beliefs and experiences will help you face the disease and figure out how to handle it.

What Emotions Might I Feel?

Shock - No one is ever ready to hear the words, "You have cancer." It is normal to question why cancer happened to you and think that it is unfair. There is nothing fair about cancer and no one deserves to have cancer. Accepting the cancer diagnosis and figuring out how to cope with and treat your cancer can be difficult.

Disbelief - You may not even believe your diagnosis, especially if you do not feel sick. You may want to get a second opinion and talk with other people who have been diagnosed with cancer to find out how they dealt with the news of their diagnosis.

Fear - You may be scared. Scared of the cancer treatments, scared of the pain and suffering or scared of what the cancer will do to your body. You may fear unwanted changes to you and your loved ones' lives. You might even be scared of the cancer itself.

Anger - You might be so frustrated with your diagnosis and stressed by the changes cancer will bring to your life that you lash out at family, friends or even the doctors and nurses.

Hopelessness - Cancer can be so overwhelming that you may feel at a total loss for what to do next. You may have trouble seeing past your future with cancer to a life of health and happiness. It might seem impossible to maintain a positive attitude. The treatment plan might seem like too much to deal with and you might feel uncertain that you will stay strong and fight the disease.

Guilt - You might question what you could have done differently to prevent cancer. You may wonder if you could have noticed symptoms earlier. You might feel guilty that your loved ones will have to deal with your cancer and the challenging treatments that you will undergo.

Depression - Cancer affects not only your body, but your mind too. You may begin to have trouble sleeping, feel sad all the time and grow increasingly anxious or panicked. The way you see yourself—your body, mind, and spirit—might change and you could feel a deep sense of grief at losing who you were before cancer. Confiding in a close friend can help you cope. If you do not have someone to turn to and share your feelings with, you might want to see a mental health professional.

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What Questions Might I Have?

  1. What kind of cancer do I have and what does it mean?
  2. Where in/on my body is my cancer?
  3. Has my cancer spread? What stage is my cancer and what does that mean?
  4. What is the survival rate for my type and stage of cancer?
  5. What hospitals or cancer centers can best treat my cancer?
  6. What treatment options do I have? Am I eligible for clinical trials?
  7. How long will I have to undergo treatment?
  8. What are the possible side effects of my treatment?
  9. Will I have to quit work during treatment? Will I be on a special diet?
  10. How do I know if my treatment is working?
  11. How will my cancer treatment affect my family? What support services are available?
  12. What other important information do I need to know about my cancer?
  13. Where can I talk to other cancer survivors?
  14. What can I do to prevent my cancer from reoccurring?
  15. Who do I call if I have questions?

Tips for Coping with Your Cancer Diagnosis:

The more you know about your type of cancer, your treatment options and your chances for recovery, the better equipped you will be to deal with the fear, confusion, and anxiety you are probably feeling. You must be your own advocate and seek out the most innovative, current and impactful treatment options. Educating yourself about your cancer and creating a support network of family, friends, and a personalized health care team can help you take control of your situation and make informed decisions.

  • put a team in placePut a team in place. You can't fight cancer alone. You need help from a team of cancer specialists. In addition to oncologists, your health care team will likely include other clinicians, such as nutritionists, pain management specialists, psychologists, and/or rehabilitation therapists, to address your other needs throughout treatment. In addition to finding an experienced, multidisciplinary care team, it's important to find one that treats you as an individual and makes you a partner in your care.

    A good doctor-patient relationship is an essential component of cancer care. A good relationship is built first on trust. You need to be able to trust your doctor and other members of your health care team. A lack of trust can create a barrier to receiving the care you need and deserve. A good relationship is also sustained by mutual respect.

    Your cancer team deserves respect, and so do you. Your doctor should offer you a central role in the decision-making process, and work with you to select a cancer treatment plan that is right for you. Moreover, a good partnership with your health care team is based on open and effective communication.
  • Take an active role. You are ultimately in charge of your health. It's important that your doctor takes time to listen to you and answer your questions. Unfortunately, today's health care system often leaves doctors feeling hurried and patients confused.

    More and more, people fighting cancer are beginning to take an active role in their care. Taking an active role means working cooperatively with your health care team and asserting your needs. Even if you prefer to have your doctor take the lead, you should be fully involved in decision-making about your treatment.

    Being an active participant in your cancer care can give you a greater sense of control over the situation. One way to become an active participant in your care is to build a good relationship with your cancer team. You can gain confidence and become empowered to fight when you feel like you have a team fighting with you.

    Remember, a good relationship requires open communication. Creating open communication with your health care team ensures that you:
    • Gain clear information about the disease
    • Understand your treatment options
    • Make informed decisions about your care
    • Receive a more personalized treatment plan
    • Better prepare for and manage side effects
    • Express your feelings and concerns
    • Receive comprehensive follow-up care
    • Feel more in control of the situation
    • Feel confident about your care and recovery
  • Educate yourself. Learning about cancer is like learning another language. When you understand the language, communication improves between you and your health care team. Ask your doctor if there is written information or educational materials (e.g., books, pamphlets, videos, etc.) that you can take home with you. The more you know, the more confident you will feel about your decisions.
  • Keep files and records. Staying organized is an important component of cancer care. If your health care team members reside in different locations, coordination of care can be a challenge. Keep a record of your medical history, medications, test results, and symptoms. Also, keep a calendar with your doctor's appointments and treatment schedule. Take these records with you to your visits. The more organized you are, the better able you will be to help manage your care.
  • Come prepared to appointments. Have you ever left your doctor's office and forgot to ask something? Even the most caring and patient doctors have hectic schedules and often have limited time to spend during each visit. Try to write down the specific questions you want answered ahead of time.
  • Find out what works for you. Each person's communication style is different and what works for one may not work for another. Some people feel more in control and empowered when they know all of the details. Others find all the information to be overwhelming. Still others would prefer information they can take home and read about on their own time. Decide how much or how little information you want to know, and let your doctor know.
  • Speak up. You know yourself better than anyone else. It's important to keep your health care team fully informed about how you are coping and any new or unusual symptoms you may be experiencing (e.g., changes in your sleep, bowel habits, mood, appetite, memory, sexual function) so that your needs can be addressed.
  • Bring someone with you to appointments. Naturally, you may be preoccupied with worries or find it difficult to concentrate during appointments. Whenever possible, it may help to bring a family member or friend with you. They can think of questions you may not have thought to ask, and point out changes you may not have noticed. They can also help take notes for you and assist with decision-making.
  • Take notes. It's easy to forget what your doctor said after you leave your appointment. Bring a notebook to all your visits and take notes, or get a friend or family member to take notes for you. You can also ask your doctor if you can tape record your discussion (always ask permission first) for later review.
  • Clarify what you don't understand. If your doctor uses medical terms you don't understand, don't be afraid to ask him or her to explain it in another way. Try repeating what you think was said back to your doctor for confirmation. If you understand better with pictures, ask to see x-rays or slides. If you still have difficulty understanding, ask your doctor for printed material, or other educational materials. Unless you tell your doctor that you don't understand something, he or she will usually assume that you do.
  • Stay in touch. Make sure you understand the next steps before leaving your doctor's office. If your doctor was not able to answer all of your questions due to time constraints, ask when a good time would be to finish your conversation. Find out the best method (e.g., phone, email) for you to reach your health care team if you have questions once you get home.
  • Consider a second opinion. Even if you have a good relationship with your doctor, you may want to seek a second or third opinion before beginning therapy. Don't be afraid of offending your doctor if you would like to get a second opinion. Most doctors understand the value of a second opinion when facing a major decision.
  • Seek help when you need it. Remember, you are your most important advocate. Your health care team is there to help you. Let them. If you are dealing with troubling side effects, it is better to seek advice rather than wait to see if the symptoms become worse. Don't wait for your next scheduled appointment to contact your health care team about an important issue. Ask for referrals to psychological, financial, and/or spiritual support resources. In addition, family members, friends, and other cancer survivors can provide a tremendous amount of support as well.
  • Don't give up. If you have been given no further options, it does not necessarily mean that other options do not exist. Remember, there are other doctors that may present a different picture. If you want to continue treatment, explore your options. Some hospitals may be able to provide more advanced technology and resources that can help you. If you want to continue to actively fight cancer, find a health care team that is willing to fight with you.

You and Your Care Team at CTCA

you and your care team at CTCAWhen you become a patient at Cancer Treatment Centers of America (CTCA), you will have your very own team of cancer experts fighting for you each day. CTCA doctors are accomplished in using leading-edge technologies and tools to treat all types of cancer, including advanced stage and complex diseases.

When you first arrive at a CTCA hospital, you and your care team will work together to decide on a treatment plan which best suits your individual needs. Throughout your care, there are several ways our cancer experts will partner with you to fight cancer.

First, your care team will communicate openly with you and encourage you to take an active role in your treatment decisions. It's all part of our Patient Empowerment MedicineSM (PEM) philosophy of care. It means our cancer experts work with you at whatever level you are comfortable to empower you with options, information, and support the way you need it.

Second, your care team will make every effort to understand your unique medical condition and needs so you receive a personalized treatment plan. Since they reside in one location, members of your care team are able to meet several times a week to review your treatment regimen and goals. They will work together to share knowledge and provide you with the best coordinated care possible.

Third, your CTCA care team abides by the Mother Standard® of care. This means your doctors will take time to know you as an individual and answer your questions. It means they will provide you with the same warmth, unconditional support, and respect they would extend to their own mothers, fathers, sisters, brothers, and other loved ones. It also means that your care team is committed to exploring every cancer treatment option available to you and continually researching innovative new options.

At CTCA, you will find a unique, patient-centered approach to fighting cancer. Our cancer experts are here to provide open, honest and straight-forward communication to support you as an individual. Here, you truly are first and at the center of your care.

Resources

Mayo Clinic - http://www.mayoclinic.com/health/cancer-diagnosis/HQ01306

American Cancer Society - http://www.cancer.org/docroot/MBC/content/MBC_4_1X_The_Emotional_Impact_of_A_Cancer_Diagnosis.asp

I hope this information has helped you in some way. I will check in with you again next month. In the meantime, stay strong and hopeful.

Sincerely,

Jill Kafin

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