Being empowered often comes from being informed. And when it comes to diseases like blood cancer, having or not having information can make a significant difference in outcomes.
This Blood Cancer Awareness Month, Lorna Warwick, CEO of the Lymphoma Coalition, is on a mission: to prove how early and informed decision-making can help make all the difference.
“When a patient is diagnosed with cancer, it’s scary. Everything we know about cancer says that you should be afraid,” explains Warwick. “Coming in as a new patient, you’re trying to deal with that fear and cope with that fear, trying to understand all this new terminology, what’s happening to you. It’s a brand-new world.”
Getting educated is one of the best ways to cope with this new reality. Part of that is understanding not only who to talk to, but what to say. Statistically, more people are living with cancer today than ever before, thanks to new treatment options. But these new treatment options often only make it to a fraction of the patients who might benefit. This makes being informed about the latest research and innovations even more important. A better-informed patient can be a more active partner with their medical team in selecting the best treatment and care for their individual situation.
Christi Shaw, CEO of Kite, a Gilead Company, knows firsthand about the importance of being armed with the latest information when facing cancer either as a patient or as a caregiver. “I lost my mother and sister to cancer. My mother died of breast cancer and at the time we were told there was nothing more we could do. We learned later that she could have received a therapy that may have helped her live longer. When my sister was diagnosed with multiple myeloma, an aggressive form of blood cancer, we did our research. She ultimately utilized several new treatment options and ended up enrolling in a clinical trial to give her the best chance possible.”
In the case of lymphoma, organizations like the Lymphoma Coalition report that patients often don’t learn important information like the specific subtype of their blood cancer. As a result, they’re not being referred to specialists with enough time to build the best treatment plan.
The Lymphoma Coalition has set out to change this and has built an international lymphoma patient charter that outlines patient rights, which include timely investigation and accurate diagnosis by a qualified medical expert with a specialty in blood diseases, and referral to a specialist for their particular subtype of cancer. Getting to a specialist that sees only a specific type of cancer on a regular basis will help patients learn of and have access to new innovations more quickly.
“It’s critical that patients and their caregivers have accurate information and access to resources to do their own research and learn about different treatment options,” continues Shaw. “This will help empower patients to take charge of their cancer care as a partner with their physician and medical team and know the right questions to ask.”
In large B-cell lymphoma, for example, about 40% of people will not respond to initial treatment. Their disease will progress, and they’ll need more treatment. Giving yourself the best chance might mean already having a plan in place before you need it. According to Warwick, “When cancer progresses, you have to make treatment decisions more rapidly than most people want to. Quick but informed is key — if you’ve already asked your medical team questions like ‘Is this an option for me? I’ve heard about this. What do you think? Where would it fit into my treatment plan?’ Then you can feel more secure in your decisions.”
It also allows for access to treatments that might require travel to a larger hospital or additional referrals without losing important time. In the case of treatment with an innovative therapy known as CAR T-cell therapy, Lymphoma Coalition research found that patients would have liked to have known about the therapy earlier.
“Having cancer is scary, and we can’t take away that fear altogether, but many people have less fear of the unknown if they are armed with information earlier,” says Warwick. “Like anything else in life, the better prepared you are, the more confident you feel.”
For more information on treatment options, resources for proactively creating a treatment plan with your healthcare team, and how to contact a lymphoma patient organization in your area, visit lymphomacoalition.org.