Leukemia: How to Get the Best Care

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Andrew Schorr

Andrew Schorr is a medical journalist who has devoted his life to empowering and educating people who have been affected by a serious illness. He co-founded Patient Power LLC, and has hosted nearly every webinar it has produced. In 1996, he became a patient himself when he was diagnosed with chronic lymphocytic leukemia (CLL). Schorr spoke to HealthCentral by phone, sharing his tips and advice for how leukemia patients can become their own best advocates.


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You’re facing a diagnosis of leukemia; now what?

If you’re facing a diagnosis of leukemia, you need to be prepared to be a "full partner in the diagnosis and treatment of your disease," Schorr said. "You need to get educated. You have to become a smarter patient. You have to know your condition. Knowledge, confidence, hope—that's what we say." This will help you take control and feel empowered by advocating for yourself, he noted.


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Resources at your fingertips

The good news is there’s an incredible amount of information out there, and most of it is available online. However, it may take some practice to navigate through all of this data and determine what’s helpful and relevant to you–and what’s not. Early on, it’s important to begin identifying tests and treatments you and your doctor should consider, and also the best timing and sequence for these to be performed, Schorr explained.


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Personalized medicine means more treatment options

"We are in an age of personalized medicine," Schorr said. This means that researchers are continually learning more about the specific characteristics of different types of cancers, like leukemia. There are many different types of leukemia, and each type can also be broken into different subtypes. "So if you have a subtype of CLL, you'll begin to learn the relevant treatments for that," he said.


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Find a doctor focused on your specific type and subtype of leukemia

"With so many identifiable subtypes, how can one doctor keep up with all of that?” Schorr said. “You, the patient, have one illness and one subtype. You have to advocate for what you have and find who is best to treat it." If a doctor misses something, if a diagnosis is inaccurate, or if you’re given a treatment that isn’t the best option for you, the result may be lower quality of life, more side effects, an expensive treatment that doesn’t work—or, worst-case scenario, death.


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Look for top doctors for your disease

There are lots of great resources to help you find the right doctor to treat your leukemia. Try searching for relevant research and studies in online medical journals. "As you uncover research studies, look to see who the lead authors are. You'll start to see recurrent names," Schorr said. You can also look at which doctors sit on medical advisory boards for major research hospitals and large non-profit groups. Those are generally among the top doctors in their field, he said.


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Look for reputable sources

"Doctors used to say, 'Don't believe what's on the internet,'" Schorr said. But there are some very reputable resources online. You’re going to need to develop filters to help you determine if information is from a credible and trustworthy source, Schorr said. Use a critical eye–how is the information substantiated? Does the data or research being presented meet high standards?


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Make sure you have a knowledgeable health care team

When looking for the right health care team, take time to ask questions and make sure you feel comfortable and confident in their approach. "It’s not just what treatment you should have, but which treatment should you have, when?" Schorr said. "And also, which test should you have when? Test results are increasingly becoming complicated by genomics."


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Know your full range of treatment options – including clinical trials

"Next, what are the full range of treatment options to treat your cancer?" Schorr asked. "Is there a clinical trial with an experimental approach that you should consider?" Clinical trials can be useful in offering cutting-edge treatments for all stages of leukemia. The first treatment Schorr underwent for his CLL was a clinical trial. "It gave me a 17-year remission," Schorr noted. "That drug wasn’t approved by the FDA until 10 years later."


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Focus on relevant and actionable information

Instead of trying to absorb everything, Schorr advises patients to look for information that is relevant to your leukemia and the stage you are in. There may be times when you’re faced with making big decisions, such as what doctor to go with, or what treatment to opt for. Other times, your treatment may be in a lull while doctors wait and see how things develop, Schorr noted. This can be especially true for CLL.


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Don’t forget to live your life

At each step and stage, there is important information you need to know–what Schorr calls “just in time” information. While educating yourself is important, some people inundate themselves with information, wanting to know every detail and possibility of the disease. "Go live your life," Schorr said. "Sometimes you’re in a 'watch and wait stage,' or what I call 'watch and worry' stage. You have to wait and see how the cancer reveals itself, to see what the right thing is at the right time."


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Find a community that will support you

While leukemia is a scary diagnosis, it’s important to know that you’re not alone, Schorr said. Get connected to other people within your disease community. For people with leukemia, Schorr recommends contacting the Leukemia & Lymphoma Society. They offer free cancer resource advisors who can talk you through the process. They’re also knowledgeable about current treatment options and clinical trials.