2010 started out as a nice, normal year for Juliana Fuller. Then 25 years old, she was living happily with her husband Corey and going to school to become a nurse practitioner. They dreamed of having a baby. But then she noticed the lumps on her neck and groin.
She shrugged it off at first. But months later during a lecture on the lymphatic system, Juliana's teacher asked students to assess each others' lymph nodes. When Juliana's classmate — and then the teacher — felt the lumps and told her to get them checked, she knew she couldn't put off going to a doctor any longer.
Juliana wasn't unfamiliar with strange lumps. At 19 she discovered one in her leg, which was diagnosed as Ewing's sarcoma, a type of soft tissue cancer. She had the tumor removed and went through chemotherapy, which was a "terrible experience," she says, but the treatment worked and her cancer went into remission. She moved on with her life.
So when Juliana finally went to an oncologist in the spring of 2011, she wasn't prepared for an entirely different type of cancer diagnosis. MRIs, a biopsy and a PET-CT scan revealed Juliana also had lumps in her abdomen, chest, lungs and bone marrow. The doctor was blunt, she remembers, telling her: "'Well, you have lymphoma, and it's not curable.'"
"After the lymphoma diagnosis. I thought: 'How can I make plans for my future?'" Juliana says.
Her doctor told her that the good news was lymphoma is a slow-growing cancer and many people live 15 years with the diagnosis. But Juliana didn't consider that a silver lining: "Even so, for me, 15 years felt too short. I'm young. I thought: 'I've got to have better news than that.'"
Blood Cancer: Common But Unknown
There are two types of lymphoma: Hodgkin lymphoma (HL), which is a cancer of the blood and bone marrow, and non-Hodgkin lymphoma (NHL), which is actually a group of different blood cancers that develop in the body's lymphatic system.
Although lymphoma isn't a well known cancer ("I didn't know much about it before I was diagnosed — and I was a nurse!" Juliana says), about 80,000 Americans receive a lymphoma diagnosis each year and more than 700,000 people are currently living with the disease.
"Every seven minutes, someone in the U.S. is diagnosed with lymphoma. Despite this staggering statistic, many are unaware of this disease," says Anita Welborn, MSW, senior director of patient education and services at the Lymphoma Research Foundation (LRF), the nation's largest nonprofit dedicated to funding lymphoma research and providing up-to-date information about lymphoma to patients and healthcare providers.
Juliana's diagnosis was stage IV follicular lymphoma, a slow-growing type of non-Hodgkin lymphoma.
"It was a huge shock to me," says Juliana, a vegetarian who loves to run, bike, swim, surf and hike and has no family history of cancer.
"Most people who are diagnosed with follicular lymphoma are pretty healthy," says Sonali M. Smith, MD, associate professor and director of the lymphoma program at The University of Chicago Medical Center. "But it's very rare to be diagnosed with it in your 20s. The median age of diagnosis for follicular lymphoma is 65."
The cause of lymphoma isn't always clear, but scientists have identified some risk factors, including having an abnormal or compromised immune system. Certain viruses, such as hepatitis C, and bacteria, such as Helicobacter pylori, are associated with lymphoma. Some cases have genetic links, and there's speculation that environmental factors, such as pesticides, may play a role.
Juliana didn't know what to do next: "I couldn't focus… I left the oncologist's office, went to a park with Corey and just sat there feeling numb."
Her doctor suggested chemotherapy, but she decided to seek a second opinion at a friend's suggestion. "I really recommend that people do that, especially with lymphoma. It made all the difference for me," Juliana says. "I went to a blood cancer specialist, which is not something that was available to me where I was being treated initially."
The specialist suggested a non-chemo drug that could be taken via IV fluid once a week for a month. Juliana was relieved: There was no risk of infertility or hair loss, she could go to an outpatient clinic rather than a hospital and she could continue going to nursing school.
Lymphoma treatment options are getting better and better. "When I started in oncology in 1998, we had a couple of good combinations of drugs and when they stopped working, we didn't have much more," Dr. Smith says. "Today, we have many more options than we have ever had for pretty much every cancer out there, with few exceptions. Chemo remains an important tool, but there are a lot more immunotherapy and biologic agents that will hopefully make chemo obsolete."
"The non-chemo drugs, by and large, tend to be more targeted and specific. Even though they might still have side effects, the likelihood of collateral damage is lower and they have a higher chance of working," Smith says. "I don't even tell people how long they're going to live anymore, because I don't know. I can't put a timeline on there because it's improving every year."
The challenge, according to Smith, is figuring out how to best use the drugs that are available: Which combinations work best together? Is four weeks of treatment better than eight?
"That's where clinical trials come in. People shouldn't be scared to join them," Smith says. "The majority of them are using drugs that are already FDA-approved or very close to it."
Juliana was lucky to have a strong support network; her friend came with her to the six-hour treatments where they watched funny shows on TV, and her husband Corey kept things positive at home with words of encouragement: "You're going to be okay. We're in this together."
After three rounds of treatment over a year and a half, Juliana received wonderful news: A scan showed that her lymphoma was in remission.
"It felt so amazing. Although I knew it wasn't curable — it can come back at any time and I still have to go to doctor's appointments every three months — it was so awesome to get it off my back," she says.
Since that time, Juliana has actually been diagnosed with cancer two more times. She developed melanoma at age 28, and then basal cell carcinoma, another type of skin cancer, at age 29. Despite having four different types of cancer before her thirtieth birthday, each diagnosis has only strengthened her resolve to focus on the future. That said, lymphoma will always be in her rear-view mirror.
"Lymphoma has been the biggest battle for me, because it's not curable," she says.
Living With Lymphoma While Looking to the Future
Juliana's next goal was to have a child, but she knew it wasn't going to be that simple.
"I told Corey, 'I want you to feel 100 percent about this, because if something happens to me, you have to think about that,'" Juliana says.
Without hesitating, he was on board. "It isn't a sure thing that she will have a recurrence," Corey says. "I didn't want to regret not starting a family out of fear of something that may or may not happen."
The couple preserved embryos before Juliana started her lymphoma treatment just in case, but they ended up not needing them and conceiving naturally. In June 2015, the couple welcomed their daughter, Noelle Joy, to the world. "It's been the most beautiful gift to be able to have this baby. I prayed for it after my diagnosis," she says. "Even if she's crying, I just think: 'I get to have this baby!'"
When Juliana's maternity leave ends, she plans on working part-time as a nurse practitioner with an end goal of working with cancer patients and survivors. Most important, however, is treasuring every moment with her baby girl. "I want for her to be healthy and I want to be there for every big thing in her life," she says.
Lend a Hand
"I really believe that we should fundraise for research," Juliana says. "In a lot of ways, my life depends on that."
There are many ways to support lymphoma research, especially in September, which is Lymphoma Awareness Month, and on September 15, which is World Lymphoma Awareness Day. Here are some ways you can help:
- Donate to the LRF at lymphoma.org/donate.
- Raise awareness and encourage others to donate to the cause by participating in one of many Lymphoma Walks around the country or by biking in the Lymphoma Research Ride in Montgomery County, Maryland, on September 27, 2015. Learn more at lrf.donordrive.com.
- Spread awareness by tinting your social media profile photos red in honor of those with blood cancer. For more information, check out lymphoma.org/howtoLIR.
If you have lymphoma and want to learn more about treatment options and meet others with the condition, you can attend LRF's annual North American Educational Forum on Lymphoma (lymphoma.org/edforum) in Brooklyn, New York, from October 2 to 4, 2015. You can also learn more about lymphoma and patient resources at lymphomaresources.com, the site for The Alliance for Resource Collaboration in Hematology (ARCH), which is a team effort by several of the top lymphoma associations to reach people diagnosed with lymphoma in community settings. And if you have lymphoma and would like to participate in a clinical trial near you, visit ClinicalTrials.gov.