What Does it Mean to Advocate Yourself With Cancer?
Advocating for yourself as a cancer patient simply means taking an active role in your diagnosis and treatment plan. It means you understand your diagnosis, have considered the risks and benefits of treatment options, and choose a treatment that fits best for you as an individual.
If you think of advocacy, you may think of people protesting and fighting for their rights.This couldn't be farther from the truth when it comes to cancer self-advocacy. Being your own advocate does not mean having an adversarial relationship with your healthcare provider. In contrast, it means working together with your healthcare provider as a team to come up with the best treatment plan for you; a treatment plan which is more satisfying for your healthcare provider as well as it will better fit your specific needs for the best care possible.
Importance of Self-Advocacy
The concept of "self-advocacy" is not just a passing fad, but can literally make the difference between life and death. Studies tell us that patients (and loved ones of cancer patients) who learn more about their disease and are more actively involved in their medical care, have a better quality of life. Some studies even suggest they may have better outcomes as well.
With advances in cancer treatment, there are more and more options available for people living with cancer. Sometimes there are several choices with regard to treatment, and only you can know the option that is best for you. It is you living with cancer, and only you know how aggressive you wish to be with treatment, and what side effects you are willing to tolerate. Your oncologist, your friends, and even your spouse and children may decide on a different plan if they were faced with cancer. Honoring yourself means not only making the decision that is right for you alone but being able to cope with the opinions of others who may differ in preferences.
Self-advocacy not only helps you choose your options and discover new treatments, but it reduces the anxiety and fear associated with cancer. It leaves you feeling empowered and in the driver's seat.
Learn About Your Cancer
The first step in being your own advocate is to learn as much as you can about your cancer. There are many ways to do this.
- Ask questions—lots of questions.
- Consider getting a second opinion, ideally at a cancer center that treats a large number of people with cancer similar to yours.
- Review information provided by your oncologist and other cancer care team members.
- Research your cancer online or in the library.
- Consider joining an online cancer community, cancer organization, or cancer support group.
Ask Questions
Asking questions is extremely important when talking with your oncologist. While these healthcare providers are accustomed to explaining the ins and outs of cancer to patients, everyone enters a diagnosis of cancer with different experiences. Don't be afraid to repeat questions until you are satisfied that you understand the answers.
Bringing a friend with you to appointments can be very helpful as you later try to remember what your healthcare provider said. Some people find it helpful to take notes or have a friend take notes while talking with their healthcare provider. You may also wish to bring to bring along information you have been given by friends or found online.
Don't be afraid that you are taking up too much of your healthcare provider's time. Oncologists recognize the importance of addressing questions. It can also save you time later on—and the headache of phone calls—to make sure you leave the exam room with your questions answered.
Keep a notepad around between visits, and if the questions aren't urgent, write them own to ask at your next visit.
Second Opinions
You've probably heard the old adage "2 heads are better than 1." In medicine that rings true as well, and it is generally accepted that many people with cancer will ask for a second opinion.
It's important to note that one healthcare provider cannot know everything about every type and subtype of every cancer. Combined with this, advances in the treatments of some cancers is skyrocketing, for example, more new drugs for lung cancer treatment were approved during the period from 2011 to 2015 than during the 40 years preceding 2011. In addition to approved treatments, some oncologists may be more familiar with the clinical trials in progress for your cancer—trials which may be specific to the particular molecular profile of your cancer.
What some people fail to realize, is that even if your second (or third or fourth) opinion healthcare provider recommends the same treatment plan as the first, you will have the reassurance that you haven't left any leaves uncovered as you move forward with your care. Peace of mind can be priceless.
Finding Good Medical Information Online
While there is a plethora of medical information to be found online, there are currently no regulations as to who can publish this information. Consequently, it can be difficult to know whether the information that comes up on a google search is written by a board of healthcare providers or your next door neighbor's 13-year-old son.
What should you look for in finding good medical information on the internet?
- Check the URL. If it ends with .gov, .org, or .edu it may be more reliable than a site ending with .com. There are some excellent .com sites, but check other criteria in judging the information.
- Who is the writer? Is the person responsible for the article a medical professional?
- Is the article reviewed by a healthcare provider, other healthcare providers, or a medical review board?
- Are the sources of the information listed? If so, do this reference-quality information such as studies published in peer-reviewed medical journals?
- Can you clearly distinguish the information being discussed from the advertisements?
- Are there links to further information if you wish to research the subject in greater depth?
Connecting With the Cancer Community
As noted earlier, connecting with a cancer support group, online cancer community, or cancer organization can be invaluable in educating yourself about cancer.
A caveat is that it's important to keep in mind that information in chat rooms and from individual patients may not pertain to you, or could even be outright wrong. Yet these communities can be an excellent starting point, especially if you aren't sure what questions you should even be asking. For example, why should you ask your healthcare provider about molecular profiling if you have lung cancer?
How to Make Good Medical Decisions
Like so many decisions we make in our lives, breaking the process down can make it a bit easier, especially when you are coping with the emotions that accompany a cancer diagnosis.
- Take your time. Decisions about cancer treatment are not usually urgent, that is, you can often take a few days or a few weeks to sit back and analyze your choices.
- Talk to others. Pass your choices by your loved ones; discuss them with your healthcare team, and consider talking with others via a cancer support group or online cancer community. Keep in mind that this input can be invaluable, yet the final decision is ultimately up to you. Don't feel pressured into making a decision that is not right for you personally.
- Weigh the pros and cons of your choices. In addition to understanding the effectiveness of the treatments, you will want to consider other factors such as the side effects, risks, costs over and above what your insurance covers, and logistical factors such as the need to travel for treatment, child care, and time off of work.
Shared decision making means more than just listening to the advice of your healthcare provider or giving informed consent. This process, in addition to evaluating the benefits and risks of treatment options, takes into account your personal values, goals, and priorities as a foundation for the choices you make.
When You Struggle to Be Your Own Advocate
If you are feeling reluctant to advocate for yourself, consider how you would advocate for a friend in a similar situation. What would you ask? What would you say? If you would speak up for a friend, speak up for yourself.
If you are still finding this difficult, one option is to have a friend or loved one advocate alongside you. I have done this personally for friends with cancer. It may be easier for you to have someone else ask difficult questions, or to bring up ways in which you aren't completely satisfied with your care. In this setting, your friend can "play the bad guy" while you play the role of "nice patient."
Being Your Own Advocate with Medical Insurance
If you don't understand your bill or see charges you don't expect, don't just accept it. Make a phone call. Sometimes silly mix-ups can cause an insurance claim denial, even something as simple as having your birth date entered incorrectly on a clinic form. Check out these tips on how to fight an insurance claim denial.
Some people may wish to consider hiring a medical billing advocate when overwhelmed with the whole insurance process. You may not understand your bills, be swamped with those your insurance is refusing to pay or be so ill that the thought of sorting through those papers is just too draining. You may hesitate to take this approach since this is a paid service—it isn't free—but depending on your situation it may be penny wise dollar foolish to go it alone. Medical bills are, in fact, the leading cause of personal bankruptcy in the United States.
Next Steps in Advocacy
Learning to be your own advocate with cancer is like climbing a mountain. Some people, having found their way to the summit, wish to share what they have learned with others who are beginning their journey; a need to give back in some way.
Certainly, cancer is exhausting, and not everyone will feel this way. Yet the support and advice of those who "have been there" is a tremendous comfort to others.
You don't need to run marathons, or speak internationally to make a difference; you don't even need to leave your home. The use of social media among people with cancer is increasing every day; with many communities including a combination of patients, family caregivers, advocates, researchers, and healthcare professionals. In fact, one of the greatest recent advances in cancer management has been "patient-driven research"—research and clinical studies that are being conducted as a direct response to suggestions made by people living with the disease.
On a final note, no matter where you are in your cancer journey it is good to remain informed. Research is being conducted not only for treatments but for possible ways of lowering the risk that a cancer will come back.
