When you or a loved one is diagnosed with cancer, the physical and emotional stress of this challenging disease begins almost immediately. Emotions take control, which inhibits decision-making at a critical time. More specifically, a time when you are expected to make life-altering decisions about an unfamiliar subject matter – all while navigating a complex and fragmented healthcare system.

You are faced with overwhelming amounts of information, including cancer treatment options, specialists, and tests.

This unfamiliarity that comes with being diagnosed with cancer can cause feelings of fear, uncertainty, and dread – all of which are distractions from your cancer care and detrimental to your emotional well-being.

The first step after being diagnosed with cancer? Take a breath.  

Steps to Take After Being Diagnosed with Cancer

Realize that you have choices. You can stop the conveyor belt that starts immediately after diagnosis long enough to gain your footing. Here are 5 steps to successfully navigating this uncharted territory:

1. Take Time To Consider What is Most Important To You

• Do you want to stay close to family and friends as you undergo treatment or pursue treatment at a larger cancer center?
• What side effects are you willing to endure and what would you rather avoid?
• Are you interested in pursuing complementary treatments?
• What characteristics are most important to you in your healthcare provider?
• Do you get energy from sharing with others or are you more prone to minimal sharing with a close circle of friends/ family?

2. Educate Yourself About Your Disease

• Ask your healthcare provider for trusted resources, websites
• What stage/ grade is my disease?
• What are the treatment options for cancer like mine?
• Is my cancer rare?
• Has genomic testing been ordered for my tumor?
• Would it be reassuring to have someone with expertise help you flatten your learning curve?
• In gathering information be careful not to adopt other people’s “cancer story” for yourself

3. Assemble your Healthcare Team

• Do you need the expertise of a specialist?
• Do you feel seen and heard by the staff/nurses/physicians?
• How far are you willing to travel for treatment?
• Does the office respect your time?

4. Gather your supportive resources

• Identify the gifts and talents of your friends and family and let them help you with the tasks they are best suited to
• Locate local support groups and/or connect with an oncology social worker
• Let your insurance agent, CPA, and/or financial planner know about your diagnosis

5. Communicate Your Wishes

• Share your desires with family members
• Utilize this opportunity to ensure all family members have advanced directives in place

As your private patient navigator, I can help you alongside your cancer journey. Contact me for a complimentary consultation.

You may have heard the term patient advocate. You may even know someone who has benefitted from the services of a patient advocate However, you may be unclear as to how to find and hire one.

How do I  find an advocate?

First, know the difference between an independent patient advocate and an institutional advocate.

Most hospital systems and cancer centers provide advocates, patient navigators, or case managers for their patients.  The job descriptions may vary slightly, however, their main objective is to ensure patients are able to navigate within their institutions.   Their ultimate allegiance is to the institution they work for.

It is common for these individuals to manage several patients at once which minimizes the level of personal attention they are able to provide.

In contrast, an independent advocate/ health consultant works for the client they serve, which means their allegiance is to you.  Their objective is to help you meet your goals and to ensure you get the personal attention required for your specific situation.

What qualifications should you look for when hiring an independent advocate/ health consultant?

There are many facets to healthcare.  The actual treatments, medical billing and insurance, hospitalizations, and finding the necessary expertise for complicated diagnoses are just a few.

What you should look for depends on the situation you are facing, so you must first consider the question: ‘What do I need help with?’ 

• Do you need help finding a second opinion for a new diagnosis?

• Do you need help understanding your treatment options?

• Do you need help with medical billing or insurance?

• Do you feel alone and need a partner in decision-making?
• Are you supporting loved ones and it has become overwhelming?

Once you have identified what you are looking for it is time to search for the professional who will best meet your needs.  Remember the advocate with the most expertise may not be located near you. However, many specialized advocates routinely provide their services remotely.

There are several public  directories available that allow you to search by location, keyword, or the service you are looking for.

Questions to help you choose an independent patient advocate/ health consultant?

Once you have located several potential independent advocates who provide the services you are looking for, the next step is to interview them to see if there is a fit. An advocate should provide a complimentary call for you to get to know them and to ask questions.  These calls may range from 15 to 20 minutes and are not meant to provide you with specific advocacy solutions.

• What are your advocacy or care management credentials?

• Have you had other cases similar to mine?

• What is your background, training, and experience in providing these services?

• Are you certified for this work?

• What do you charge for your services?

• Does anyone else pay you to help me?

• Do you have errors and omissions insurance?

• Do you know the approximate amount of time it will take you to help me?

• What is your current caseload?
• Do you have references?

If you would like to learn more about how I can specifically help you or a loved one, please contact us for a complimentary get-acquainted call at  Cancer Champions.

You may have heard the term patient advocate… You may even know someone who has benefitted from the services of an independent patient advocate. However, you—like most people—are probably still unclear as to what they actually do and how to find one.

People frequently reach out to me asking for clarification about the services I provide.  In order to further define the value of this growing profession, I’ll offer the following explanation of my role as an independent patient advocate in the hopes that it brings clarity to anyone considering obtaining additional support for themselves or a loved one.

Although I hold a board certification for private patient advocacy, I have found that a more accurate explanation of the services that I provide is in alignment with those of a professional health consultant. What do I mean by that? Well, allow me to explain.

The most common definition of an  “advocate” is a person ( such as a lawyer), who works and argues in support of another’s cause, particularly in court.

This (^) definition is the one most people think of when they hear the word advocate. However, it routinely conjures up connotations of an adversarial relationship or situation.

As a private patient advocate, I am not typically arguing on behalf of another. Quite the contrary actually. 

As an expert in the subject matter of cancer, I—like an advocate—provide professional counsel.   My goal is for you to gain the clarity you need to make decisions about your care with confidence and to achieve your desired outcomes.  I work with you and your healthcare team to facilitate your goals.  Our relationship is more like a collaboration than an adversarial situation.

What do I mean by this? Well, most of us have the intellect to sell our own house, manage our investments, or even engage with the legal system without the assistance of counsel. However, what we lack is the specific depth of experience, training, insights, and knowledge of the subject matter we are navigating. Because we have a desire to maximize our outcomes, we generally hire “consultants” in these areas.

The complexity of our healthcare system, coupled with a difficult diagnosis, should elicit the same desire to seek a subject matter expert to guide and support us in our healthcare decision-making.

So with that said…

How does independent health consultants/advocates help you maximize outcomes?

• I bring 25 years of experience working with cancer centers, researchers, and biotech professionals, which means you gain unique insights
• My extensive network of physicians, researchers, and contacts within centers of excellence provides you with access to a deep well of expertise
• I bring the subject matter expertise within oncology, (the study and treatment  of cancer)   necessary to ensure your support “team”  maximizes their skillset  and valuable time is not wasted on a steep learning curve

When to hire an independent health consultant/ advocate?

• When you lack a deep knowledge, insight, or understanding of your diagnosis

• When you are unsure of how to go about engaging  the expertise needed to treat it

• The beginning of your journey is the most critical time, as you assemble the “right”  healthcare team and plan for your situation

• When your desire is to maximize your outcome

How to find an independent patient advocate/health consultant?

You can find an independent patient advocate/ healthcare consultant using the directory link below or if you’d like to learn more about how I can specifically help you with a cancer diagnosis please contact me at cancer champions for a complimentary get-acquainted call.

Directory