By By Jennifer Wilson, LCSW | LLS, Information Specialist
No one expects to be told they have blood cancer. Some people may have gone to the doctor’s office for a physical or only had a minor complaint, and left with a life-changing diagnosis they never saw coming. Others may have been feeling poorly for months before finally getting a diagnosis. For still others, it all happened so fast that their heads are still spinning.
Regardless of how you came to your blood cancer diagnosis, most people report not having absorbed a lot of information after hearing the word “cancer." The learning curve can feel steep, the vocabulary seems like a foreign language, and the need for support is tremendous.
It’s absolutely normal to feel blindsided and overwhelmed and have trouble processing new information in such an anxiety-producing situation. After all, the important questions don’t always come when you’re sitting in the doctor’s office.
This is where the Information Resource Center (IRC) at The Leukemia & Lymphoma Society (LLS) comes in. We provide information and support to those with leukemia, lymphoma, myeloma, myelodysplastic syndromes and myeloproliferative neoplasms. Especially if you’re still reeling from the news, it can be reassuring just to talk to someone who is very familiar with your diagnosis.
As information specialists, we’re trained to give you accurate up-to-date information about your disease and treatment options. We can also assist with financial and social challenges, and connect you to other resources for additional help. LLS offers a number of services you can tap into from home: telephone and web education programs, online videos, discussion boards, and online chats. Other offerings include copay assistance, a peer-to-peer support program and publications.
Some people know very little about their disease. They may have had it for years and still not know exactly what it is or what drugs they’ve been treated with. Others have done extensive research, are very knowledgeable and keep tabs on all the latest developments. They can all get assistance from the IRC.
People often call with specific questions or sometimes just to see what we might be able to help with. We welcome all calls. Anyone newly diagnosed would likely benefit from getting a second opinion, particularly at a National Cancer Institute-designated cancer center. Finding a hematologist-oncologist who treats your disease regularly and is familiar with the latest advances can be invaluable. We also have suggestions on how to get the information you need during your appointments. We suggest bringing a companion with you to appointments to take notes or record the conversation. We can also help you come up with questions to ask at your next appointment or come up with a few “next steps."
Sometimes when someone get a diagnosis of chronic lymphocytic leukemia or an indolent lymphoma they are told the treatment plan is to “watch and wait.” That can be very unsettling because it is counter-intuitive to the way we are accustomed to think about cancer treatment. We can explain in simple terms why this approach really does make sense.
In cases of acute leukemia, where treatment may need to start immediately, patients and families may reach out to the IRC after some of the initial flurry of testing and treatment has quieted down. They have questions about the disease and the treatments but also need a place to help make sense of all that they have been through. We strive to educate and support all newly diagnosed blood cancer patients and to be there for them throughout their journey.
We believe that it is important to know all your treatment options, including clinical trials, at all stages of treatment. We have a clinical trial coordinator who does customized searches and is able to support patients throughout the process of finding an appropriate trial.
What if you need immediate treatment and don’t know how you’re going to pay for it? How can you prepare now if you know you will have to undergo a transplant? Is there a benefit to having an excisional biopsy rather than a needle biopsy? Is there someone you can talk to who has the same diagnosis? How can you tell your children about your diagnosis?
The questions keep coming when you’re dealing with a blood cancer and you don’t have to learn everything at once. It’s normal to want to share what you’ve been through but you may not always think to reach out. Once you understand what you have and how to treat it, the knowledge can bring a sense of relief and be incredibly empowering. We want patients and families to know that we are here for them throughout their journey.
You can reach LLS’s Information Resource Center by calling (800) 955-4572 Monday to Friday, 9 a.m. to 9 p.m. ET. Visit Newly Diagnosed: First Steps for more information.
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