Perspective

Self-Advocacy

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A cancer diagnosis can leave a person in a state of mental and emotional chaos. I remember with clarity, the whirlwind of emotions I felt when I was diagnosed with breast cancer. At this defining moment, it becomes imperative to arm yourself with knowledge and that’s why self-advocacy becomes relevant.

What is Self-Advocacy?

Self-advocacy is the process we use to make our own choices and exercise our rights. We make our choices by accepting or rejecting available options. Self-advocacy also means equipping yourself with the tools and skills necessary to feel comfortable about affirming yourself and clearly communicating your needs.

Who is an Advocate?

An advocate is anyone (cancer patient or otherwise) who are taking the necessary steps to be informed about a cancer diagnosis and acts as a decision maker about cancer treatment and quality of life after a cancer diagnosis. Advocates are friends, family, caregivers and health care providers to a cancer patient or the patients themselves.

Importance of  Cancer Self-advocacy:

Advocacy refers to taking control and being empowered with the knowledge to make decisions for a cancer patient. Being proactive is key and no matter what stage you are with your cancer journey, you can become an advocate.

  • Self-advocacy gives you more stability and a feeling of regaining control of your life: It is common to feel like you have lost control of your life when diagnosed with cancer. I remember feeling mentally disconnected to life due to the never-ending hospital visits and innumerable tests. It only began to get easier when I began advocating for myself and getting more involved in my treatment plan.

 

  • Advocacy builds confidence and hope: Though cancer tries to break a person, leaving you feeling without hope or purpose, being an advocate will help boost confidence to face challenges that are sometimes insurmountable. I can attest to the role hope plays in beating cancer. Knowledge, they say is power. WhenI knew my options and treatment plan, I knew I had every reason to be optimistic as I was confident I was getting the best care.

 

  • Self-advocacy can improve quality of life: Though a cancer diagnosis may be similar to another person, cancer treatments impact everyone differently.  Cancer treatments have various side effects. Quality of life is the standard of health, comfort, and happiness a cancer patient experiences during and after cancer treatment. Asking questions and knowing what to expect, greatly improved my quality of life.

 

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Tips on what to do when diagnosed:

Understanding your cancer diagnosis and prognosis is crucial. There are so many variants of cancer so having a clear understanding of the cause and possible outcomes of the disease will help you make an informed treatment plan.

  • Have an intelligible understanding of the type of cancer: Having a better understanding of what type of cancer you are affected with, will help you through your cancer journey. Better understanding empowers a cancer patient and gives hope to fight cancer.

 

  • Understand your cancer staging: Cancer staging helps determine how much cancer is in a person’s body (size) and its location(s). Cancer is staged on a scale of 0-5 depending on the cancer type. Staging is done to determine the best and specific cancer treatments. It is of utmost importance that you understand your treatment options.

 

  • Ask questions: When it comes to your life and health, there are no stupid questions. Write down questions to ask your care team prior to your hospital visits to avoid forgetting them. Ask questions for clarity and to have a better sense of your diagnosis, staging and treatment options. The following are examples of questions to ask and it is not limited to these, feel free and confident to ask whatever you need to know.
    • What type and stage is my cancer?
    • What are my treatment options?
    • What is the expected benefit of the treatment option?
    • What is the risk of the treatment option?
    • What are the possible side effects (very important!)?
    • Is infertility a side effect of the treatment option?
    • What is the frequency and duration of treatment?
    • What is the cost of treatment?

 

  • Use a credible and reputable source of information: I have had frightening experiences trying to google symptoms on the internet. There are a lot of fake resources on the internet and they should absolutely not be trusted. The American Cancer Society, the National Cancer Institute, the American Society of Clinical Oncology and a host of others are more resourceful and accurate. Always talk to your care team about any concerns or symptoms. Don’t try to do it yourself, your care have answers.

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You owe it to yourself to take charge of your life. A cancer diagnosis is not the end of life. You have a fighting chance and the first step to winning the battle with cancer is to be empowered with knowledge and take control of your life and kick cancer out!

 

 

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