Copelink Blog

Today's blog post was researched and written by CancerCare intern, Breana McDonald. Breana is a Prep for Prep student. She currently attends The Hill School in Pottstown, PA, and she is interested in becoming an oncologist.

A cancer diagnosis is often challenging and may trigger a world of unexpected emotions. During this time, it may be hard to make informed decisions. You may feel scared because of myths that accompany the word “cancer” or the diagnosis itself may be frightening. However, being able to make informed decisions can make all the difference throughout your cancer journey. Here are some steps, tips and suggestions:

Gather information. This may seem simple, but it is one of the most important steps. You can gather information in many ways and start by listening and talking to your oncologist and health care team about your diagnosis. They are there for you and should be able to answer any questions you may have about your cancer, such as recommended treatment plans, goals of care, side effects, risks and benefits.

Doing research on your own is another way to gather information. Websites, books, and medical dictionaries can further your knowledge about your cancer and available treatments. Some reliable sources include:

• American Cancer Society; www.cancer.org; 1-800-227-2345
  
• American Society of Clinical Oncology; www.cancer.net; 1-888-651-3038
• National Cancer Institute; www.cancer.gov; 1-800-422-6237
• National Cancer Institute’s Dictionary of Cancer Terms; www.cancer.gov/publications/dictionaries/cancer-terms
• Spanish Version of National Cancer Institute’s Dictionary of Cancer Terms http://www.cancer.gov/espanol/publicaciones/diccionario

Tip: Watch out for certain websites. Some websites can be misleading and sometimes just plan incorrect. Talk with your oncologist or someone on your health care team about websites and other sources you plan to explore.

Suggestion: Get a second opinion. It may boost your confidence, make you feel more comfortable about your decisions or help you choose a treatment option. A second opinion may add to your understanding of your particular type of cancer and its treatments.

Understand the information. Knowledge is power, but only when you completely understand it. More people are taking the time to fully understand everything there is to know about their particular cancer including its treatments, side effects, late effects (health impacts that can occur months or years after treatment has ended), and how it will impact quality of life.

Suggestion: Ask questions and talk with your health care team. To begin this discussion, start with your oncologist and health care team. Ask questions on anything from definitions of complex medical terminology, treatment options, and side effect and pain management. Asking questions demonstrates that you want to take an active role in your care. Don’t be scared to talk with your health care team: they are there for you! Talk to them about any concerns or worries you may have, which might include long-term effects, risk of infertility and impact on daily life. If there is a lot of information being handed to you, ask for clarification or ask for things to be written down.

Tip: Write down your questions. Preparing questions for your health care team before you talk to them may help you remember them. Some people, with their doctor’s permission, record the conversations to listen to later and to understand it better.

Get support. Cancer may be stressful, and some find it helpful to seek support. Try to have a good relationship not only with your doctor, but your entire health care team. When considering your options, discuss them with people you trust including family, friends, members of clergy, spiritual advisors, oncology social workers, or other people with cancer. There are several opportunities, such as free/non-profit organizations to support people living with cancer including:

• CancerCare; www.cancercarecopay.org; 866-552-6729
• American Cancer Society; www.cancer.org; 800-813-4673
• National Coalition for Cancer Survivorship; www.canceradvocacy.org; 1-888-650-9127

Suggestion: Practice shared decision making. This process is very effective for some people. It is when a person with cancer and their provider(s) make decisions together taking into consideration all available knowledge including the patient’s goals and interests.

Suggestion: If necessary, seek financial support. Help with the costs of cancer can come from many resources such as health insurance, government programs, public and nonprofit hospitals, and co-pay relief programs.

A Chinese philosopher, Lao Tzu, once said, “The journey of a thousand miles begins with one step,” and your first step with cancer includes knowing how to make well-informed decisions.

Additional financial resources include:

• CancerCare; www.cancercare.org; 1-800-813-4673
• Patient Advocate Foundation Co-Pay Relief Program; http://www.patientadvocate.org/patient_services.php?p=751; 1-800-532-5274
• Needymeds.org (a service that offers free or discounted drugs); 1-800-503-6897
• There are several organizations listed in CancerCare’s Financial Edition of A Helping Hand