Doing Cancer Right with the “Three T’s”
How to build the right team, get the right tests, and find the right treatments
Originally published by Katie Couric in her newsletter,
Wake Up Call
Perhaps nothing could be more galvanizing than a cancer diagnosis. No sooner do you find yourself in the Cancer Club than you know you must spring into action and make important decisions—often without the luxury of time, convenience, and an endless budget. It feels like diving into the deep unknown. You routinely hear about powerful new technologies to prolong life across many types of cancer, but how do you find out about these lifesavers and, most importantly, gain access and get it all paid for? Do you have the right doctor? Are you at the right place for care?
Let me tell you a few things I’ve learned about surviving cancer, having been diagnosed twice with the disease, the first time nearly thirty years ago when I was given three years to live. Ever since, I’ve had a front row seat to the system that I’ve now seen from every angle, from behind many secret doors, and which has given me the ultimate wartime playbook to follow. The science of modern medicine is indeed amazing, and technologies have never been better for survival rates, but the system still sucks. It did decades ago, and it remains fragmented and unfriendly today.
We’ve entered the era of personalized medicine that allows us to tailor our treatments precisely to our unique biology—and even to that of the cancer itself. But accessing this cutting-edge medicine means knowing which questions to ask, which tests to get, and which treatments to pursue. Contrary to what you might think, it’s on us as patients to make sure we navigate our treatment with a self-advocating force.
And at the heart of that force is simply following the Three T’s:
Build the Right Team
When that diagnosis comes in, your mind will flood with urgent questions. Time suddenly takes on new meaning as you transition abruptly into Go mode. Your life was already busy, and now you have this. Where to start? At the top of your priorities will be building the right medical team—clinicians who will provide the most effective and practical care.
Among your first orders of business is choosing your main medical center. You may have been diagnosed at your local community hospital and are now considering a larger center that’s known for treating your type of cancer. How much time you have and whether or not you can travel long distance for treatment will factor into your decision.
There are basically three types of centers: 1) community; 2) academic medical centers (AMCs) that are affiliated with university medical centers; and 3) comprehensive cancer centers recognized by the National Cancer Institute, many of which are also AMCs. There are more than seventy NCI-designated cancer centers, located in thirty-six states and the District of Columbia. They are funded by the NCI to deliver cutting-edge treatments. You can find an NCI-designated cancer center in your region by searching “Find a Cancer Center” at www.cancer.gov.
Your local community hospital won’t have the same focus on bench-to-bedside medicine, but community hospitals do have their perks and plusses—they are closer geographically, easier to get in and out of, and tend to be friendlier and less intimidating. They may also have contracts with the larger centers, which can help you take advantage of both. If your local hospital has a relationship with an academic center, ask what that partnership truly entails. Can you, for example, integrate your treatment between two different places to take advantage of the leading-edge medicine going on at an NCI-designated center while being treated locally for routine visits? A community hospital may provide access to academic clinicians and even clinical trials, but it also could be a bit more marketing than true integration. Ideally, you want to have a lead doctor with deep knowledge and hands-on experience in your particular cancer, combined with a strong local hospital that sees a high volume of patients like you and that you’re comfortable with for ongoing execution. No matter which place you choose, make sure you’re at a center that sees a lot of patients like you.
Get the Right Tests
Diagnostic testing has jumped light years ahead in the past two decades, and the medical community can now pinpoint with much more precision what you have—and what you can expect. The more you know, the more you stand to gain in time and progress toward your cure. Not every cancer calls for treatment right away, which is why getting the right tests is essential to fully understand the characteristics of your particular cancer and even your unique biology down to your DNA. Here’s your cheat sheet for understanding the different types of diagnostic tests that can help you establish your baseline, push for a precision approach, and follow your trends using your online health portal.
Basic blood count and metabolic panel: The same blood tests you undergo when getting a routine check-up offer a general view of your health status and can indicate problems throughout your cancer journey. If you have low blood cell counts or abnormal levels of liver enzymes, for example, it could be an indicator of infection, treatment response, or your cancer acting up.
Imaging: Imaging tests are exactly what they sound like—medical procedures that create detailed images of the inside of your body. Examples include everything from classic X-rays to CT and PET scans, MRIs, ultrasounds, and mammography. Each test has its own advantages in diagnosing and following your cancer.
Biomarkers: Biomarkers are increasingly revolutionizing the personalized approach to treatment. The term refers to molecules in the body that can indicate the presence of disease, such as specific proteins or DNA in a person’s blood, urine, or tissue sample. In cancer detection, biomarker testing identifies substances that are produced by cancer cells or by the body in response to cancer. It behooves you to ask about biomarkers tests relevant to your cancer.
Genomics: As the term implies, this looks at your genetic makeup and can also include sequencing of cancerous cells to determine which mutations are making them cancerous. There are various types of genomic testing, from whole-genome sequencing that analyzes the entire genomic DNA of a cell, to genotyping that aims to look for specific variants in the DNA without sequencing the entire genome. Faster and cheaper methods to analyze DNA and focus on targeted areas that can provide certain information are routinely emerging.
Immune profiling: This is a newer technology that’s being used more and more. It’s a way to measure the state of your immune system at a given point in time and predict how well you will respond to certain treatments, such as immunotherapies that can activate your own immune system to fight the disease.
When in doubt about coverage for the more advanced diagnostics, such as genome sequencing, call you insurance provider and ask. If you get a no, bring the matter up with your lead doctor. Companies that collect and analyze molecular and clinical data can often help in getting high-tech diagnostic testing paid for if your insurance won’t cover it.
Find the Right Treatments
No longer are cancer patients treated with a one-size-fits-all approach. Surgery, radiation, and/or traditional chemotherapy remain standard of care for many types of cancer, especially for solid tumors that can be removed. But now that science can deliver therapies attuned to your precise biology and your cancer’s behavior, the game has changed.
Among the most promising and trailblazing newer treatments today are precision-based immunotherapies that leverage your own immune system to fight the cancer, and targeted drug therapies that match your particular type of cancer and can stop the cancer from growing. Some of these therapies are standard of care for certain cancers, but many are not and neither are they covered by insurance. When you want access to the best medicine and find yourself up against a barrier, this is when you must push your doctors and ask about clinical trials that might be right for you. Clinical trials are where novel drugs and treatment protocols are being tested that could be better than standard treatment. Today, only 8 percent of patients are in a trial, mostly because they didn’t know one was available for them. Ask about them.
The treatment phase is usually the most challenging time and can extend for days, weeks, even months or years. Aim to go into treatment with eyes wide open. Ask detailed questions about the side effects of a drug or the risks of a surgery or radiation before you have them. It’s also critical to know where the delays will happen most frequently and when things will take more time than anticipated. Knowing every detail helps you plan and helps others plan around you.
In addition to knowing which treatments you’re undergoing, be sure to know how they are delivered. Oral? Injection? And if you require injections, how often and how long does it take? Do you have to go somewhere to receive them, or can you inject yourself at home? The answers to these questions will help you plan those logistics. At the same time, you’ll want to plan for physical complications from minor side effects like fatigue and nausea to more serious ones like infection or depression.
With most cancers, there will be key metrics or “numbers” to follow that track the status and progression of the illness. These numbers help you know how you are doing, and whether a certain treatment is working or not. Your clinician can tell you which numbers are ideal to watch through your portal upon routine testing. This allows you to track your progress and know when you may need to raise your hand and ask questions about abnormal results or if something seems awry.