What You Need to Know as a Newly Diagnosed Blood Cancer Patient and How to Advocate for Yourself

In a recent HealthTree webinar, Cassandra McDonald, Jason Mook, and Robyn Osborn shared things that helped them when they were newly diagnosed with blood cancer. Below, read a summary of their experiences to learn things that may help you better navigate your diagnosis. 

Understanding your diagnosis 

Jason explained that his diagnosis of chronic lymphocytic leukemia (CLL) took several months to confirm. He stressed the value of using reliable resources to learn about a diagnosis, like HealthTree University, which provides free educational videos with experts. He said the videos helped him understand complex terms and feel more prepared to talk with his care team.

Robyn had three different types of cancers before she was diagnosed with MGUS, a precursor to multiple myeloma. MGUS later advanced into smoldering myeloma, then active myeloma. At the time of her MGUS diagnosis, she chose not to research deeply at first. This was because she felt she was still emotionally recovering from the prior cancers she had faced. Looking back, she encouraged new patients to seek out trustworthy resources early, so they feel more informed about what might happen next.

Cassandra’s diagnosis of myeloma came after she pushed for further testing when something in her blood work didn’t look right. She highlighted the importance of trusting your instincts and asking for additional tests when needed.

For people living with blood cancer, understanding your diagnosis can help you make informed choices about your care and reduce uncertainty. 

The role of watch-and-wait

Many blood cancer precursors and chronic blood cancers do not require treatment right away. They can progress slowly and remain stable for years. If patients’ symptoms are mild and do not interfere with their quality of life, doctors may recommend “watch-and-wait,” also known as “active surveillance.” During this time, your oncologist regularly monitors the condition over time without starting treatment immediately. Watch-and-wait can help patients avoid unnecessary treatment-related side effects for as long as possible. 

Jason shared that he wished he had asked his oncologist to explain watch-and-wait more clearly from the beginning. Robyn said she was comfortable with the approach because of her past health experiences, but she later realized the value of doing more research during that period. 

If you are in watch-and-wait, not starting treatment right away does not mean your care team is ignoring the cancer. Instead, they are balancing timing and risks to choose the safest path forward. If you have questions about watch-and-wait or future treatment options, please discuss them with your blood cancer specialist. 

Finding support systems

Each panelist emphasized the importance of having supportive people involved in their care.

• Jason leaned on his wife, who helped research and prepare questions for appointments. He also relied on others in his family, friend circle, and church community for support.
• Robyn relied on her son, who works in the biotech industry, to help her understand medical details and connect with specialists.
• Cassandra named her sons, fiancé, mom, friends, and an oncology social worker as vital support. She also found community within HealthTree programs and events. 

Speaking up and advocating for yourself

All three panelists agreed that self-advocacy is essential. Cassandra shared her experience challenging a hospital policy that could have denied care to people unable to pay, showing how speaking up can help not only yourself but also others.

Robyn talked about asking for a referral to an oncology dietitian when treatment side effects made eating difficult. She advised other patients not to wait for providers to offer these referrals but to request them directly.

Jason described asking his oncologist for a referral to a CLL specialist. He encouraged patients to remember that it is normal and appropriate to seek second opinions or request specialists as part of their care team. 

Additional advice for newly diagnosed patients

The panelists shared several key tips:

• Write down questions before appointments so you remember what to ask.
• Record doctor visits (with permission) to review later.
• Ask your oncologist if they are a specialist in your type of blood cancer. If not, request a referral to see a specialist.
• Seek credible resources such as HealthTree, Blood Cancer United (formerly the Leukemia & Lymphoma Society), or other established organizations when learning about the blood cancer you’ve been diagnosed with.
• Remember that your experience is unique. Support groups can be helpful, but everyone’s path looks different. 

These steps may help you feel more in control to ensure that your care matches your needs. 

Key takeaways

Learning that you have blood cancer can be overwhelming. But taking small steps to educate yourself from reliable resources, seeking a blood cancer specialist, leaning on loved ones for support, seeking the help of professionals like oncology social workers, and advocating for your needs can make a difference. Ask questions and work as a partner with your care team to help you feel more confident as you move forward in navigating a blood cancer diagnosis. 

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