Doreen Zetterlund got the shock of a lifetime back in 2015. A lump in her neck that she thought was a stubborn muscle spasm turned out to be something a lot more serious and incurable.
An MRI showed the lump was a swollen lymph node. More tests found swollen nodes all over her body. The Los Angeles resident was urged to see an oncologist as soon as she could. She was later diagnosed with small lymphocytic lymphoma (SLL) and eventually with chronic lymphocytic leukemia (CLL).
SLL is the same disease as CLL. Both are slow-growing cancers that affect your white blood cells called B-lymphocytes. When abnormal cells are only found in the lymphatic system, it’s called SLL. When they’re found in large numbers in the bloodstream as well, it’s called CLL. These abnormal cells don’t work the way they should, which can lead to serious infections and bleeding.
Zetterlund works in the entertainment industry and is now in her 60s. Her second act in life took her into the unknown world of science – far from her comfort zone in the world of the arts.
Get Your Mind Around Your Diagnosis
Zetterlund recalls the moment when she first heard the news: “I was sitting in the oncologist’s office and he’s like blah, blah, blah … leukemia… blah, blah, blah … lymphoma.” Then the cancer doctor said, “You have the ‘good’ kind of cancer,” she recalled. “Go live your life and don’t worry about it; we’re not going to do anything about it.”
He handed her a pamphlet about her cancer and asked, “Do you have any questions?” She said, “I don’t even know what this is. I don’t know what questions to ask!”
“All I ever heard about cancer is you catch it early and get it out of you. So for someone to say, ‘we’re just going to watch it’ – that’s a hard concept.”
Gwen Nichols, MD, chief medical officer of the Leukemia and Lymphoma Society, says, “Doctors call it ‘watch and wait.’” But for many people, it really is “watch and worry."
But it’s standard of care if your cancer isn’t widespread. Your doctor will monitor you for signs that your cancer is getting worse with physical exams, lab tests, and sometimes scans. If your cancer shows signs of progression, your doctor probably will suggest treatment then.
“You don’t want therapy if you don’t need it right now,” Nichols says.
Get to Know Your CLL
Zetterlund took a deep dive into all things CLL – from new medical terminology to cutting-edge medicines and everything in between. She learned that modern treatments are effective at putting the cancer into remission and clinical trials are researching even newer medicines.
She also found out that many people stay in “watch and wait” for months, years, or sometimes even the rest of their lives.
The best way to advocate for yourself is to educate yourself about this disease, Zetterlund says. “Then you can ask informed questions, then you can be more in charge of what you want to know,” she adds.
Nichols agrees. Borrowing from the old Syms clothing store commercials, she quips that “an educated consumer is our best customer.” This is absolutely true when it comes to medicine as well, she says.
Here are some steps to take:
Front-load your knowledge. CLL is a slow-simmering disease. If you’re in “watch and wait” mode, now’s the time to learn as much as you can about your cancer and treatment options. You never know if and when you’ll need it. You don’t want to begin at the 11th hour, Zetterlund says. “You might not feel well, you’re rushing to get into treatment, and you won’t have time to educate yourself.”
Shop around. Part of “front-loading your knowledge” is picking a CLL specialist (not just a regular oncologist) you connect with. Zetterlund wasn’t satisfied with her first oncologist, so she “interviewed” several before finding the one who fit her best. She says she learned more and more about her disease from each appointment. She asked questions about how things would likely unfold, what her cancer markers meant, and what were likely the best treatments for her.
Be picky about your information. If you just google CLL, you’re likely to find sites that push a particular treatment. When you’re looking for good, up-to-date information, go to trusted sources. These include:
- Leukemia and Lymphoma Society
- CLL Society
- National Cancer Institute
- Websites of major cancer centers
Find support. “People seem to have an idea of what support groups are … that you sit around and wring your hankie and cry because you have cancer,” Zetterlund says. But for her, that’s not the case. She belongs to a group sponsored by the CLL Society and also is a patient advocate with the organization. She says CLL Society groups are focused on education and sharing information about CLL experts, new treatments, side effects, and more.
How to Talk to Your Doctor
Being on the same page with your doctor is extremely important. After all, this is a relationship that could last the rest of your life.
- Learn as many medical terms and words as you can so you know what they are talking about.
- Tell them if you don’t understand and have them explain it in plainer language.
- Bring notes so you remember what you wanted to talk about.
- Ask a trusted friend or family member to go with you to appointments to provide a second set of ears.
- Ask for a medical interpreter if you need one to explain what the doctor says in your native language.
Ask “What Should I Expect?”
“That’s one of the best questions patients ask me,” Nichols says. Your doctor may say you might feel fatigue, or you might get swollen lymph nodes, night sweats, weight loss – or you may not.
But one thing she really stresses is the dangers of infection. CLL and its treatments affect your ability to fight even a simple infection. “Many doctors don’t explain that well enough to patients,” Nichols says. “The way you’ve felt about a little cold or fever can’t be the same right now. A little fever can become a big problem quickly.” The worst thing you can do is take a pain or fever reliever and hope it just goes away. Call the office at the first signs of any infection.
Ask detailed questions about what to expect from your treatment plan, too. This includes:
- How long it will take
- Whether your insurance will cover the cost
- Any side effects you might expect
“For some, a side effect of, let’s say, numbness in fingers and toes might be a small price to pay for remission. But for others, it may keep them from doing their work or something that they love. If you’re a concert pianist or violinist, that’s a really life-changing side effect. If there’s a choice, you choose something else. Your doctor is not a mind reader. They need to hear from you,” Nichols says.
Another thing to ask is whether a clinical trial is a reasonable option for you, Nichols advises. It’s not always a last resort reserved for late stage CLL. That’s a false belief. “A lot of the way we treat CLL is still a question mark – which medication should we start first, should they be used together, or one after another?” Clinical trials help find those answers.
Zetterlund remained in “watch and wait” for 22 months. She says she knew exactly what to do when she needed to go to treatment. She managed to get the last seat in the clinical trial of her choice.
She took part in research on the targeted therapy acalabrutinib (Calquence). She had to leave the trial because of an unrelated health problem. But she’s been in partial remission for almost 3 years and is back in “watch and wait.”
Be Your Own Best Advocate
Advocating for yourself may involve getting a second opinion. “You aren’t going to offend your doctor by getting a second opinion. And if you do (offend them), that’s a bad doctor you shouldn’t stick with,” Nichols says. “If the doctor knows what they’re doing, the second opinion will say much the same thing.”
Zetterlund says, “You have to learn to be assertive. You might not feel like your assertive self when you’re sick with cancer.” But remember, she says, “Someone has to take charge of this and it’s you!”
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
CLL Society: “Understanding Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma (CLL / SLL),” Watch and Wait (Active Observation).”
Gwen Nichols, MD, chief medical officer, Leukemia and Lymphoma Society.
Doreen Zetterlund, CLL patient, patient advocate for CLL Society.
