How to build the right team, get the right tests, and find the right treatments.
Once you involuntarily enter the “Cancer Club,” it won’t be long before you must move into action and make important decisions — without the luxury of time, convenience, and, for many of us, an endless budget. You might be comforted by the reminder that there are powerful new technologies to prolong life across many types of cancer, but when you realize you have no idea how to access that lifesaving tech and get it all paid for, the fear and frustration set in.
Having been diagnosed with the disease twice, I’ve had front-row and behind-the-scenes seats to the system. I’ve learned that modern medicine is indeed amazing, and technologies have never been better for survival rates, but the system sucks. It did decades ago, and it remains challenging 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. Navigating treatment requires an unfortunate amount of self-advocating. To help guide you, I’ve broken down what you’ll need to do in the steps below, which I’ve dubbed the Three T’s.
1. 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 illness to worry about, which you don’t even know how to start tackling. You can’t even begin to move through this without 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 but now you’re probably considering a larger center that’s known for treating your type of cancer. Your specific prognosis, your everyday responsibilities, and whether or not you can travel long distances for treatment will factor into your decision.
There are basically three types of centers: community hospitals, academic medical centers (AMCs) that are affiliated with universities, and comprehensive cancer centers recognized by the National Cancer Institute, many of which are also AMCs. There are more than 70 NCI-designated cancer centers, located in 36 states and the District of Columbia, and they’re funded by the NCI to deliver cutting-edge treatment. You can find an NCI-designated cancer center in your region by searching “Find a Cancer Center” at Cancer.gov.
Your local community hospital won’t have the same focus on bench-to-bedside medicine. Still, community hospitals do have their perks and plusses — they’re 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, in which case, you get the best of both worlds. 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? The partnership could just be a marketing play without true medical integration, so get the nitty-gritty about the real relationship.
If a cancer center isn’t easily accessible to you, the next best thing would be a leading doctor with deep knowledge and hands-on experience in your particular cancer, and who has a relationship with a strong, convenient hospital you’re comfortable with for ongoing execution. But no matter which place you choose, make sure you’re at a center that sees a lot of patients like you.
2. Get the Right Tests
Diagnostic testing has jumped lightyears 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. 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 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 produced by cancer cells or 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’ll respond to certain treatments, such as immunotherapies that can activate your immune system to fight the disease.
When in doubt about coverage for more advanced diagnostics, such as genome sequencing, call your insurance provider and ask. If you get a no, bring the matter up with your 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.
3. Find the Right Treatments
No longer are cancer patients treated with a one-size-fits-all approach. Surgery, radiation, and/or traditional chemotherapy remain the 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.
Know the latest treatments and get them covered
Among the most promising treatments today are targeted drug therapies that match your particular type of cancer, and immunotherapies that leverage your immune system to fight the cancer. Some of these therapies are standard of care for certain cancers, but when they’re not, they’re not automatically covered by insurance. The standard of care is often listed at NCCN.org, where you can find what’s typically covered by insurance. But ask your doctor for the best treatment for you — if it’s beyond standard of care, often your doctor can help you get coverage or find a way to reduce your out-of-pocket costs. Sometimes the best treatment option is through a clinical trial, where novel drugs and treatment protocols are being tested that could be better than existing treatments. Today, only 8 percent of patients are in a trial, mostly because they didn’t know one was available for them. Ask your doctor about clinical trials for your cancer.
Know what to expect during treatment
The treatment phase is usually the most challenging time and can extend for days, weeks, months, or even 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. It’s also critical to know where the delays will most frequently occur and when things could take longer than anticipated. Knowing every detail helps you plan your treatment and post-treatment.
Be sure to ask how your treatment will be delivered. If you require injections, find out how often and how long the infusions 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.
Track your treatment
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’re 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.
Over the past three decades, it’s been a breathtaking privilege to witness the pace of science and the dawn of personalized medicine. But it’s been frustrating to simultaneously watch the gap widen between patients and the healthcare system. The number of cancer drugs approved in recent years is staggering. Between January 2000 and October 2022, a total of 573 anticancer agents were approved, including targeted drugs (48 percent), biological therapies (43 percent), and cytotoxic treatments (9 percent), according to research. Last year alone, more than 25 new cancer therapeutics came on the market. The trend will only continue, and I hope more patients will take advantage of these revolutionary medicines. Follow the Three Ts, and you too can go from fatal to fearless.
To follow Kathy’s cancer journey and learn her insights on how to cope with a diagnosis, read Fatal to Fearless.
