(BPT) - Imagine you’ve just been given the news that you have blood cancer, but you are told, “not to worry, it’s the good kind.” A cancer diagnosis can be shocking, and you have just heard that you should be relieved — even grateful?
In one survey, nearly half of people (48%) reported hearing this type of language from their healthcare provider when diagnosed with chronic lymphocytic leukemia, or CLL. CLL is the most common type of adult leukemia. This year alone, nearly 21,000 adults in the U.S. will be diagnosed with this slow-growing, chronic blood cancer.
Most people with CLL do not show any initial symptoms, and doctors may delay treatment until the disease progresses — which is known as “watch and wait”. However, some people with CLL may require treatment as soon as they are diagnosed. That’s why it’s so important for people diagnosed with CLL to be their own advocates, seek out second opinions and work closely with their healthcare team to discuss their specific needs and concerns.
“Finding out you have a chronic blood cancer like CLL can feel isolating, and we’ve found that more than one-third of patients do not receive the education they need from their doctor at the time of diagnosis,” said Dr. Brian Koffman, founder and medical director, CLL Society. “It’s important for people to learn more about CLL through the many credible resources available, connect with others in their patient community, and become active partners in their own care.”
Key Questions to Ask a Doctor:
Feeling empowered to advocate for one’s own care when navigating CLL involves asking the right questions. A few key questions to raise with a physician may be:
- Is there anything else I may need to know about my CLL? It’s important for people with CLL to feel confident about asking their doctor for more information and next steps for their diagnosis. Sometimes, doctors will conduct tests to determine the stage of the disease, or certain genetic factors that may inform the disease management plan.
- Will I need treatment and what are my options? Every person’s CLL may take a different course. People diagnosed with CLL should visit their doctor regularly to check for any health changes or potential disease progression. A doctor will monitor test results and their symptoms to decide when it may be time to begin treatment, and to discuss possible options.
- Should I seek out a second opinion? People who receive a diagnosis of CLL or any type of blood cancer should feel comfortable reaching out to receive a second opinion to make sure they understand and feel armed with full information about their specific disease.
Staying Informed and Getting Connected:
It’s important for people with CLL to know that they are not alone on this journey and that there are resources and a community of support within reach. Some ways for people with CLL to connect with others, create a strong support team and stay engaged include:
- Developing strong relationships with medical teams. In addition to primary care physicians and medical oncologists, people with CLL can look for support from physician assistants, nurse practitioners and social workers.
- Asking about the latest information on clinical trials. Most people first learn about clinical trials from their doctors, but information on all ongoing clinical trials is available online at ClinicalTrials.gov. If interested, it is important to discuss potential options with a care team and review the potential risks or benefits in the process.
- Connecting with others living with blood cancer. Online and in-person support groups and local patient and caregiver events are a great way for people with CLL to share advice, discuss concerns and find added support for managing life with blood cancer.
More information about CLL and other common types of blood cancers can be found in this short educational video (www.gene.com/stories/the-diversity-of-blood-cancers) from Genentech. People living with CLL or their caregivers can find additional resources for support at www.CLLSociety.org.
 Koffman et al. A US-Based Survey: The Experiences of 1147 CLL Patients. CLL Society; 2017.
 American Cancer Society. Cancer Facts & Figures 2018. Atlanta, Ga: American Cancer Society; 2018.