Published on June 19, 2020
When diagnosed with any cancer type, one of the first things you may worry about is how soon you will need to put your job, vacations, and essentially much of regular life on hold, even if just for a while. For people with asymptomatic early-stage chronic lymphocytic leukemia (CLL), a new diagnostic tool may be able to help answer those questions by predicting the right time to begin treatment.
Researchers reviewed data from 4,933 patients around the world and developed an international prognostic score (IPS-E) for predicting time to first treatment in patients with asymptomatic, early-stage CLL. This score essentially helps the oncology team decide which patients can wait to start treatment.
“We know from studies that have been done over decades that patients who are treated early don't necessarily do better than patients who are watched and waited until they have progression of disease,” says Dr. Ian Flinn, a CLL expert from Tennessee Oncology, explaining why CLL patients are often told to watch and wait when first diagnosed.
Also called ‘watch and worry,’ this initial waiting period after a cancer diagnosis can be stressful. Alleviating that stress is one of the benefits of the IPS-E score. Having a number, or score, would help oncologists give patients and their families peace of mind when trying to explain why someone who has been diagnosed with cancer will not be rushed into treatment. It’s a simple scoring system, one which needs further study, but it has the potential to improve patient experience and outcomes.
To learn more from Dr. Flinn about the nuances of CLL treatment, view Diagnosis: Watch and Wait, a Patient Power Ask the Expert video.
Symptoms Indicate Need to Start Treatment
Generally, chronic lymphocytic leukemia is not treated until symptoms appear. Symptoms may include:
- Fatigue beyond just a bad night’s sleep
- Unexplained weight loss
- Chills or fever
- Night sweats
- Swollen lymph nodes
- Pain or a sense of "fullness" in the belly (feeling full after a small meal)
One note on the fever; you may also need a test for COVID-19 because a fever can be caused by other illnesses, too. Patient Power recently interviewed doctors who explained the differences between the swab test, which tests for active COVID-19, and the blood test, which shows whether someone has already had the disease and now has antibodies. To learn more, watch What’s the Latest on Coronavirus Antibody Tests?
Ask Questions and Get a Second Opinion
No one ever wants to hear the words, “You have cancer.” But once you’ve received a diagnosis, it’s critical to be your own best advocate.
Questions to ask your doctor:
- What is the stage and grade of my CLL?
- What is the potential for disease progression?
- Am I at risk for developing infections or other diseases?
- What should I know about toxicities of therapy?
- Can I have a copy of my pathology report to get a second opinion?
This last point is important because oncologists fully expect that you will want to get a second opinion. You won’t hurt their feelings; this is very much part of the process. With the increasing use of telehealth, you will very likely be able to get a second opinion from an oncologist at a large academic center in another state without leaving the comfort of your home.
Knowing the best time to start treatment is the first step in managing CLL. We will continue to keep you updated as new information emerges about the IPS-E scoring system.
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~Lauren Evoy Davis
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
- Tam CS, et al. A predictive tool for early-stage CLL. Blood (2020) 135 (21): 1820–1821.
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