Why You Need to Be Your Own Healthcare Advocate & How To Do It

 

Why Do I Need to Be My Own Advocate?

You and your family care more about your health than anyone else. Nobody else has the same amount of skin in the game or enough time to focus exclusively on you.  That is just a fact. Healthcare workers are compassionate and care deeply about providing great care, but they just don’t have the bandwidth to spend endless hours thinking about your problem.

You have time to think deeply about your health condition. The physician who you are about to see? They probably didn’t know you were on their schedule until that morning. Most of the time they had to ask a nurse or medical assistant for your name right before they walk in the door (it’s happened to us).

So how much time do you think they really spend thinking about the nuance of your health problem? Not much, and because they don’t have time they must operate under the law of averages. Guess who isn’t average though…YOU!

Physican-Patient Time Is Limited

Physicians have limited time to spend with each patient because they are under pressure to see as many patients as possible. This is why the typical patient-physician encounter is only scheduled for 15 minutes. If you have cancer you might get a 45-minute consult.

The physician will look at your chart for a few minutes before the appointment. If you are lucky they will present your cancer history at a tumor board meeting, where multiple physicians sit at a table and discuss your case for… 5-10 minutes. That isn’t much time but they have many other patients to see, after all.

Cancer Doesn’t Care If Your Physician Is Helpful

Your physicians, nurses and the rest of your medical staff want to provide you with great care, that is the reason they are in the medical field. With that said, there are exceptions to every rule and some physicians do not develop positive, give-and-take relationships with their patients.

If you EVER get the impression that your physician is uncooperative and doesn’t appreciate your insight, then you need to find a new doctor. This is very important and we will repeat – Find a new physician if your current physician is not 100% cooperative with you.  Cancer doesn’t wait for physicians to come around and a physician’s recalcitrance is a red flag for decision making that could adversely affect your health – and survival.

A good doctor is a doctor who welcomes your input, questions and research. This indicates a certain amount of humility, which is necessary for a physician to provide exceptional medical care. Humility indicates that your physician is open to a point of view and information they hadn’t considered. A single piece of new information could be the difference maker that helps cure your tumor.

You Need To Form A Team With Your Health Care Providers

Teammates share information, work towards the same goal and most importantly they don’t emphasize who is responsible for team wins. This is because when the team wins, everyone has their own success to show for it. In order for you and your healthcare team to beat your tumor, there must be open channels of communication. You must be willing to consider all of their input, and they must be willing to consider yours.

Humility and openness by your physician shows that they have a commitment to team approaches to healthcare. Your physician may captain the team, but you are also an important player who can provide valuable information. Believe in yourself – you can and will productively add to your healthcare team.

Make Use of Open Source Information

Many people call our current era, “The information age,” due to the abundance of, and access to information. We recommend using the internet to research your health problems. At first it might be difficult to understand technical jargon, but if you stay determined you will soon be prepared to engage your healthcare team in meaningful discussions.

With a serious health condition like cancer it might be useful to make your own health records. You can make an electronic log of medications, supplements, diet, activities and symptoms. Record what makes you feel better or worse. Maybe some of your symptoms are connected, or a specific activity is really helping. It will be difficult to keep everything straight in your mind if you don’t record that stuff. If you review those records before your appointments, then you will ask your healthcare provider more meaningful questions.

Be Empowered: Be Your Own Healthcare Advocate

First off, you can do this.  We believe you can take control of your own healthcare and most importantly, we believe you should take control. Like we said earlier, nobody cares about your health more than you and your family.

“You can learn the basic elements of your advisor’s trade. You don’t have to learn very much, because if you learn just a little, you can make them explain why they are right.” – Charlie Munger

Charlie Munger is a brilliant thinker and you can apply his advice to healthcare. You are empowering yourself when you learn about your health problem and the various treatment options. Empowered patients have better outcomes because they take responsibility and add scrutiny to their healthcare.

Questions Worth Asking Your Physician

Here are some questions that you might consider asking your health care provider:

What is causing my symptoms and what treatment are you recommending? Are there any alternatives?

Why do you recommend this treatment over the other options? 

Is there a chance for short or long-term side effects and what are they?

When might I start to see improvement in my symptoms?

What tests do I need?

What is the reason for those tests?

Will the test results change my treatment plan?

What are my follow-up plans and what symptoms should I report before my next appointment? 

When can I resume my normal activities?

Cure-Hub Will Help You And Your Physician

Our clinical trial finder is very comprehensive and it is specifically designed to find treatments with an intent to cure your tumor. There are about 6,500 clinical trials around the world that fall under this criteria and our website is updated on a regular basis.

For many cancer types the number of clinical trial options is quite high. In fact, the number is so high and updates are so frequent that no human could keep track of each of them. But with some effort you can use the power of Cure-Hub to take control of your healthcare. It starts by creating a profile and searching for trials on the clinical trial finder.

We recommend saving several trials to your profile and then sharing them with your physician. Or you can ask your physician to help you search for trials. Once you have a list of trials, ask your physician, “If you were in my position, which trial would you enroll in and why?”

Resources

Here is a list of web resources that we find helpful when we do our own cancer research:

  1. https://www.cancer.gov/ – Comprehensive resource from the National Cancer institute (NCI).
  2. https://dailymed.nlm.nih.gov/dailymed/ – ‘Daily Med’ is the National Institute of Health’s database with detailed information on all clinically approved drugs.
  3. NCCN.org – National Comprehensive Cancer Network, used by physicians to help make treatment decisions. Free to register and use.
  4. https://scholar.google.com/ – Google search engine designed to find research publications.

This list is just a start and there are many other sites that might be useful. Feel free to send us other web resources to review and add to the list.

How To Interpret Your Foundation One Test Results

 

One of the most common questions people ask is, “How do I interpret Foundation One test results?” We want to help you understand the test itself, as well as the report generated from its results. As always, we recommend consulting your physician when making any medical decisions.

What Does Foundation One Test?

The purpose of the Foundation One test is to identify changes in tumor cell DNA. Each cell in your body has a complete copy of your DNA and tumor cells are no different. Generally speaking, DNA is made up of functional units which are known as genes.

Your DNA is sometimes referred to as your genetic code because it instructs cellular processes. This is similar to the way that computer code instructs computer processes. When there are errors in your DNA code, cells can start malfunctioning. Just like an error in computer code can cause problems in a software program.

Tumors are composed of malfunctioning cells and unsurprisingly tumor cell DNA is full of errors. Damaged or altered versions of your DNA are often referred to as mutations. Sometimes a DNA mutation occurs in a harmless gene. Other times a mutation can causes a serious glitch that results in unrestrained cell division. Cell division is when one cell divides and becomes two cells.

Click to See What Cell Division Looks Like: Cell Division Gif

Gene Mutations And The Foundation One Test

If an error in DNA leads to a glitch in the functions of a cell, then division might occur more frequently than normal. Increased rates of cell division can lead to the growth of a tumor. Many different types of errors can occur in DNA and each error has the potential to negatively mutate the affected gene.

Depending on which gene is mutated, normal processes like cell division, metabolism or even tumor suppression can be negatively impacted. If a cell does not correct the error, the DNA will become permanently mutated. Each cell division will create a sister cell harboring that same mutation. Sometimes those mutations compound and lead to errors in other important genes. This can speed up tumor growth.

Over several decades scientists have cataloged common DNA errors and mutated genes found in tumors. The Foundation One test is designed to detect the types of errors and the specific genes that are mutated. In total this test assesses changes in over 300 genes that have been found to influence tumor growth.


Each patient will receive a detailed report with a table that looks similar to this:

This table has four sections and they are:

Column 1: Genomic Findings Detected

The first column, “Genomic Findings Detected,” displays mutated genes in your tumor’s DNA. The bold text is the name of the mutated gene and the lighter text is the specific type of mutation. There are many mutations that occur in DNA. Sometimes the type of mutation can confer treatment decisions. However, not all mutations can be targeted by existing therapies.

The first row in the above table displays a mutation in the ERBB2 gene. The mutation was a gene amplification. Amplification means that the gene was copied multiple times in tumor-cell DNA. In a gene like ERRB2 this could result in much more rapid cell division. Foundation One includes the word, “Equivocal,” when they believe a result needs secondary testing.

Other information such as, “Splice site…” , “Loss of exons…” , or a string of letters and numbers with, “*”,  refer to specific changes to the coding sequence of the gene.

Tumor Mutation Burden

“Tumor Mutation Burden,” is also reported in this section. This doesn’t explain a specific gene mutation but it can be useful information. The burden is characterized as high, low or intermediate. Research suggests that a high tumor mutation burden may predict response to immunotherapy.

Microsatellite Status

You might also see, “Microsatellite status,” in your report. This analyzes specific regions of DNA that are important but do not code for a gene. Sometimes errors occur in those microsatellite regions and the report will state if your microsatellite instability is, ‘high’, ‘low’, ‘stable’, or ‘unknown.’ If your report says you have high microsatellite instability, then you might have a genetic disease in mismatch repair genes (MMR). Some research suggests that immunotherapy is more effective against tumors with high microsatellite instability status.

Column 2: FDA Approved Therapies In Your Tumor Type

The second column, “FDA Approved Therapies In Your Tumor Type,” tells you therapies that are FDA approved for both your tumor type and your specific DNA mutation in that row.

In the first row, the table displays the drug, Afatinib. Afatinib is approved for use in the patient’s Lung Adenocarcinoma tumor (tumor type will be written at top right of the chart) and Afatinib targets the ERBB2 gene mutation detected by Foundation One testing. When a drug is approved to treat a mutation found in your tumor type, it is referred to as, “On-label use,” which means drug costs will likely be covered by your health insurance.

Column 3: FDA Approved Therapies In Other Tumor Types

The third column, “FDA Approved Therapies In Other Tumor Types,” tells you therapies that are FDA approved for other tumor types, but target DNA mutations found in your tumor.

In the table we see that the drugs Ado-trastuzumab emtansine, Lapatinib, Pertuzumab and Trastuzumab are all approved to target the ERBB2 gene. Those drugs are approved for use in at least one tumor type; however, they haven’t been approved for use in Lung Adenocarcinoma, the example patient’s tumor type.

Using drugs that are approved in other tumor types but not your own is referred to as, “Off-label use,” which is not usually covered by health insurance. Off-label drugs can be prescribed by your physician then legally purchased at full price. Note that off-label drugs may work in tumor types that have not yet been approved.

Column 4: Potential Clinical Trials

Rows in the last column, “Potential Clinical Trials,” will either say, “None,” or, “Yes, see clinical trials section.” The clinical trials section lists ongoing trials for investigational drugs that target mutations found in your tumor’s DNA.

Each patient’s Foundation One report will include a clinical trial section that looks similar to this:

How to interpret the clinical trials section of your Foundation One report:

Trial Phase

If you are considering clinical trials, there are a couple important pieces of information in this table. First, consider the trial, “Phase.” Phase 1 trials involve dose escalation to determine the drug’s biologically active and safe dosage.

The first patient cohorts receive very low dosages, which means some patients in phase 1 trials will not receive a biologically active dosage. That isn’t good if you need to cure your tumor.

Phase 2 trials use a dosage that has already shown biological activity. Phase 2 trials also attempt to show some efficacy which – differentiates them from Phase 1 trials. Keep in mind that a hint of efficacy isn’t known until the end of the trial. At this stage there is continued investigation to determine the best and safest dosage.

Phase 3 trials are the most important trials because they’re randomized, blinded and controlled. Blinded means the investigators (meaning clinical staff and researchers) don’t know which patients are receiving the study drug. Controlled means some patients will not receive the study drug, they’ll receive existing standard-of-care treatments. Randomized means that the patients who receive the study drug are randomly selected to prevent ‘gaming’ the patient cohort.

Targets

The column labeled, “Targets,” also has useful information. This section tells you the specific gene(s) targeted by the drug. A drug targeting multiple mutated genes in your tumor may be a better choice than drugs that hit only one target. Oftentimes the more ways you can hit your tumor the better.

How To Use The Cure-Hub Clinical Trial Finder

You can use Cure-Hub to find any phase 2 or 3 therapeutic cancer trials. The best way to search for a specific trial is to use the NCT ID – the trial’s unique identifier. This is in the last column of Foundation One’s clinical trial table. To do this, plug the NCT ID into the keyword section on the Cure-Hub Clinical Trial Finder.

If you login to Cure-Hub, you can save the trial to your profile. This makes it easy for you to read about, compare trials and share information with your physician. In our, “How To Enroll In a Trial,” section we have detailed instructions for contacting and enrolling in a trial.

You can also use drug or gene names to search for other clinical trials that might help treat your tumor. As always we are available to answer questions regarding Foundation One testing or finding the right clinical trial for you.

Here is a link to Foundation One’s guide to interpreting their test results: Link