How to Be Your Own Advocate as a Cancer Patient

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How to Be Your Own Advocate With Cancer

How can you be your own advocate when you have cancer?. Istockphoto.com/Stock Photo©GlobalStock

How can you be your own advocate when you have cancer? If you've been online or read anything recently about cancer, you've probably heard the lingo. Phrases such as "self-advocacy," "be an empowered patient," and "shared decision making" allude to a shift in the paradigm of the patient-physician relationship.

Yet how do you begin? Those of us who were born before the Y generation grew up with a different philosophy regarding the role of patients and health care providers in cancer care. There was an unspoken paternalistic relationship in which patients presented with symptoms, the doctor made a diagnosis and recommended treatment, then the patient underwent that treatment.

Medicine is changing.  The phrase "participatory medicine" refers to a relationship in which -- instead of this outdated pattern -- patients are actively working alongside their physicians to choose the best course of cancer treatment.   

You might wonder: "How can I make these decisions without going to medical school?  How do I begin to advocate for myself? Read on to understand why these questions are important and to discover tips for getting started.

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What Does it Mean to Advocate Yourself with Cancer?

What does self advocacy mean for people with cancer?. Istockphoto.com/Stock Photo©Devonyu

Advocating for yourself as a cancer patient simply means to take 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.

Of course to participate in this decision making, it's important to understand more than the patient of the past. Later on, we'll share ideas on how to do that. 

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 doctor. In contrast, it means working together with your doctor as a team to come up with the best treatment plan for you; a treatment plan which is more satisfying for your doctor as well as it will better fit your specific needs for the best care possible.

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Importance of Self-Advocacy

Why is self advocacy important for people with cancer?. Istockphoto.com/Stock Photo©dolgachov

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.

At the same time that research is expanding exponentially, patients now have nearly unlimited access to this information with which to educate themselves. Databases such as PubMed provide abstracts to countless medical journals, and websites for medical conditions abound. A friend of mine recently spoke to an entering class of medical students making this statement: "Due to access of medical information online, combined with motivation, many patients will know more about their diseases than you do!"

I can attest to this personally from meeting people who, via being an active participant in their cancer care, are doing better than they otherwise would have done had it not been for their research into their disease. At the IASCL World Conference on Lung Cancer in Denver in 2015, I met several people who are alive only because of treatments they learned about via their own networking and research. Another notable thing from this conference (and others) is that not only are medical conferences now attended by physicians and other health care providers, but by patients, caregivers, and advocates.

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.

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Learn About Your Cancer

Learn about your cancer. Istockphoto.com/Stock Photo©psphotograph

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 which 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.

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Ask Questions

Ask questions about your cancer. Istockphoto.com/Stock Photo©Slphotography

Asking questions is extremely important when talking with your oncologist. While these physicians 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 doctor said. Some people find it helpful to take notes or have a friend take notes while talking with their physician. 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 doctor'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.

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Second Opinions

Consider getting a second opinion when you have cancer. Istockphoto.com/Stock Photo©Wavebreakmedia

 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 doctor 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.

It has been found that surgical outcomes for cancer may vary depending upon the medical center. For example, high treatment volume (in other words, a large number of surgeries being done) was linked strongly with survival among people with lung cancer. Check out these tips on choosing a cancer treatment center.

Another factor sometimes overlooked is the personality of your doctor. When it comes to cancer, you may be working with your physician for an extended period of time. It pays to find a doctor who meshes with your personality and leaves you feeling comfortable and confident in your care.

What some people fail to realize, is that even if your second (or third or fourth) opinion physician 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.

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Finding Good Medical Information Online

Finding cancer information online. Istockphoto.com/Stock Photo©BrianAJackson

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 physicians 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 is 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 physician, other health care provider, or medical review board?
  • Are the sources of the information listed? If so, do these 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?

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Connecting With the Cancer Community

Connecting with others in the cancer community. Istockphoto.com/Stock Photo©Rawpixel LTD

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 doctor about molecular profiling if you have lung cancer?

Before sending off any personal information, check out these tips on social media safety for cancer patients.

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How to Make Good Medical Decisions

Making decisions about your medical care. Istockphoto.com/Stock Photo©grandeduc

Once you have asked questions and gathered medical information, how can you make a good medical decision about your care? Unlike in the past when there were few options for cancer treatment, there are now often a multitude of options - both approved and available in clinical trials - for you to choose from.

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.

  1. 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.
  2. Talk to others - Pass your choices by your loved ones; discuss them with your health care 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.
  3. 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 doctor 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.

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When You Struggle to Be Your Own Advocate

What if you find it difficult advocating for yourself?. Istockphoto.com/Stock Photo©Piximaker

What if you aren't very assertive and don't like confrontation? What if you tend to be shy and don't particularly like to ask questions? I've heard people say that they want to be a "good patient," or fear that if they ask too many questions, or come on too strong, their doctor won't like them.

Others are afraid that they will appear to be a hypochondriac if they complain of too many symptoms. For example, they may hesitate to bring up pain out of fear that if they later have symptoms which are even worse, they will be dismissed.

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 along side 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."

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Being You Own Advocate with Medical Insurance

Advocating for yourself with your health insurance. Istockphoto.com/Stock Photo©matt_benoit

It's not just your health you may need to advocate for, but your pocketbook as well. With the vast variety of insurance plans, most of which have different limits and tiers of treatment, your choices for a treatment plan may go beyond your personal preferences. Perhaps you've heard of an approach to treating your kind of cancer that is only offered at a cancer center which doesn't fall under preferred providers (first tier) in your insurance plan.

Read through your health insurance policy very carefully. Common mistakes such as not negotiating the cost of out of network care can be very costly, but are easily prevented with a little forethought. Talk with your insurance company about any areas which leave you feeling uncertain, and ask for your case to be reviewed if you think you fall under an exception to one of the rules.

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.

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Next Steps in Advocacy

Using what you've learned to advocate for others. Istockphoto.com/Stock Photo©tolstnev

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 health care 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.

Many of the cancer organizations, for example, LUNGevity and Lung Cancer Alliance for lung cancer, or Inspire, have wonderful communities of people at all places in their cancer journey. Some of these organizations also offer matching services (for example the LUNGevity Lifeline,) where someone newly diagnosed can be connected with someone who has been living with the disease for awhile.

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.  

Sources:

American Society of Clinical Oncology. Cancer.net Taking Charge of Your Care. Accessed 07/01/15. http://www.cancer.net/navigating-cancer-care/managing-your-care/taking-charge-your-care

Hagan, T., and J. Donovan. Self-advocacy and cancer: a concept analysis. Journal of Advanced Nursing. 2013. 69(10):2348-59.

Luchtenborg, M. et al. High Procedure Volume is Strongly Associated With Improved Survival After Lung Cancer Surgery. Journal of the National Cancer Institute. 2013. 31(15):3141-3146.

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