27-Year-Old’s Scalp Lumps Dismissed By Doctor As Dandruff, She Was Later Diagnosed With Leukemia

Understanding Acute Lymphoblastic Leukemia (ALL)

• Lizzie Burbeary discovered lumps on her scalp and down her neck while taking a shower at age 27, but her doctor dismissed the unusual symptoms as dandruff or a shampoo allergy. Now, 29, she’s sharing her story to help others be their own advocate and push for answers when it comes to health, as Burbeary was diagnosed with a rare blood cancer known as acute lymphoblastic leukemia (ALL), an aggressive cancer of the blood and bone marrow.
• Acute lymphoblastic leukemia, or ALL, is a type of leukemia where the bone marrow makes too many immature lymphocytes, a type of white blood cell. It is also called acute lymphocytic leukemia.
• When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.
• Meanwhile, if you’re struggling with a diagnosis, SurvivorNet has great mental health resources for you, including films that will inspire. you.

At age 27, Lizzie Burbeary discovered lumps on her scalp and down her neck while taking a shower, but her doctor ultimately dismissed the unusual symptoms as dandruff or a shampoo allergy. But months later she was diagnosed with a rare blood cancer known as acute lymphoblastic leukemia (ALL), an aggressive cancer of the blood and bone marrow. Now, the 29-year-old, who resides in Chesterfield, England, is recounting her symptoms, which began in August 2021, and what let to her diagnosis. Speaking to yahoo!life , Burbeary recalled having an extremely bad migraine months after noticing the lumps in her neck and scalp, but after suffering for about five hours in pain, she couldn't take the pain anymore. Looking back on how paramedics soon arrived and decided it would be beneficial to take her to the hospital, she explained, "I described all my symptoms I’d been suffering from for months – the migraines, hair loss, lumps up and down my neck and head which the doctor had said was dandruff, and fatigue. "At the hospital, the doctors did more blood tests and sent me for a CT and an ultrasound. Within two hours, a doctor was at my bedside telling me that they thought I had non-Hodgkin lymphoma." Burbeary ultimately stayed in the hospital overnight as more testing, including biopsies of her lumps and scans, was needed to give her a correct diagnosis.

"After a week or so, the doctors finally had an answer: I had acute lymphoblastic leukemia (ALL) and would be treated at Royal Hallamshire hospital, which had a team who had a much better understanding of the disease," she explained. Her hospital visit took place in October 2021, and leading up to it she recounted feeling "unwell" with extreme fatigue at "one of the fittest points" of her life. In addition to feeling very tired, her hair started to fall out in clumps and more lumps appeared. "They weren’t painful but I visited my GP every single week for ten weeks who seemed to think I might be allergic to my shampoo or conditioner," she added. "They wondered whether it could be dandruff and prescribed me an antibiotic shampoo and said my exhaustion must be down to Long Covid but I really wasn’t convinced."

More On Misdiagnosis

• Should Team Doctors Have Found Pro Bowler Trent Williams’ Rare Cancer? Experts Tell SurvivorNet Misdiagnosis Is Common
• ‘Star Trek’ Legend William Shatner Turns 91, After Shocking Cancer Misdiagnosis Changed His Life Forever
• 30,000 Veterans Administration Cases Could Be In Question as ‘Impaired Doctor’ Fired For Tragic Prostate Cancer Misdiagnosis
• His Lymphoma Was Misdiagnosed Twice. Now, Chris Gorelik, 54, is Sharing His Story to Encourage Cancer Warriors to Get a Second Opinion
• How to Recognize Sneaky Cancer Symptoms — Looking at Cancers That Are Most Often Misdiagnosed
• The Most Shocking Cancer Misdiagnoses of the Year; Why Second (and Third) Opinions Matter
• 34-Year-Old Mom Was Repeatedly Misdiagnosed With Constipation But It Turned Out To Be Cervical Cancer

Burbeary was later taken to a new hospital and given a consultant who informed her the survival rate for the type of cancer she had was 90% and since she was still young, her chances were better. She said, "He assured me that they would do everything they could to make sure that wouldn’t happen. However I would be treated for two to three years, starting with six weeks of chemo in hospital. It was a shock to hear that it would be such a long time and immediately I thought about work and finances. "How would we cope? But there was more news as my consultant told me – bluntly, but kindly – that I was going to lose my hair and that I might not be able to have children as they didn’t have time at this point to do egg retrieval." She started chemotherapy a few weeks into her hospital stay, and by the start of 2022, she had "a bone marrow biopsy to see how the treatment had affected the leukemia in the bone marrow." "Then I started on a new two-month course of treatment as an outpatient. This time, Scott took three months off work to take me to hospital five days a week. I had more stays in hospital for more intense chemo but by late 2022, a biopsy could see no traces of leukemia. It was such a relief," Burbeary said. Burbeary said that was of May 2024 she's continuing her maintenance plan, getting blood tests every four weeks, and additional chemo every three months, with hopes her treatment will finish up in two months from now. She continued, "I can’t tell you how quickly the time has flown by but mentally, the illness has affected me badly. I have terrible health anxiety and worry about every little bruise or mark or if I lose a bit of hair in the shower. The statistics for relapse of this type of cancer are quite high so it’s inevitable that I’ll be worried. But on the whole, I’m really trying to be positive about everything. Now as her hair is growing back, and she's back working part-time, she hopes her story will inspire others to push for answers when something feels wrong. Burbeary concluded, "As for the doctor who thought my lumps on my head and neck were dandruff, I did speak to her and she was incredibly apologetic. I told her that she really needs to look out for these symptoms in future patients. There were screaming alarm bells that I had leukaemia and I’m upset that it was missed for so long. "My main message to people is to listen to your own body and insist that more tests are done if you know something is wrong. Keep pushing for a second opinion."

Learning More About Acute Lymphoblastic Leukemia (ALL)

Being diagnosed with acute lymphoblastic leukemia (ALL) can be emotionally overwhelming. Patients and their loved ones will typically have many questions about the disease and how it will affect them. Dr. Olalekan Oluwole , a hematologist with Vanderbilt University Medical Center, spoke with SurvivorNet in a previous interview to answer some of the most frequent questions people have after an ALL diagnosis. What Is Acute Lymphoblastic Leukemia (ALL)? Dr. Oluwole says many times people worry that they might pass the disease on to other family members and wonder how they got it in the first place. He explained that in most causes it’s a quiet mutation that causes the leukemia. RELATED: A TikTok User Who is "Trying to Make Cancer Cool" Beats Leukemia Three Times; Inspires His Nearly 100,000 Followers “It is often not something that is heritable,” Dr. Oluwole told SurvivorNet. “If there happens to be a pattern in a certain family, many times that may be maybe because they were in the same environment. ‘I got exposed to the same thing, right?’ So it is not necessarily something that is heritable or like some of the other cancers, some of the other genes that we know about things like breast cancer. ALL is not like that." He said another question he hears frequently is what if people do nothing after a diagnosis. "The ALL grows very, very fast. If we don’t do anything, it will cause somebody to die within a few weeks," Dr. Oluwole says, stressing the importance of immediate care. All About Acute Lymphoblastic Leukemia (ALL) — The Most Common Questions About the Disease He says many times the leukemia is rested in the bone marrow, and because it is an abnormal growth, it just keeps dividing. "It doesn’t follow rules, and it doesn’t stop," he told SurvivorNet. "Not only that, because this is part of the immune system, the immune system is sorta like the police of the body. So those abnormal cells that have now become cancer, they have the ability to go to many places. They go into the blood, and they often go into the tissue or the lining around the brain." RELATED: ‘The Voice’ Contestant Andrew Marshall On His Leukemia Battle at 16 and How Meeting John Mayer Got Him Through Dark Times "By the time somebody comes to us and they have ALL we already assume that it has gone everywhere in the body, and we have to treat them like that," Dr. Oluwole says. He says many patients present with fever or infections because the bone marrow has "failed in its ability to make other types of blood cells." As for support after such a life-changing diagnosis, he says there are trained professionals such as have case managers and hospital navigators exist to aid people through their cancer journeys. "Cancer is a really life-changing diagnosis and we would like our patients to know they don’t have to feel as if they are on their own."

Focusing on the Positive Amid Cancer

Lizzy Burbeary's positive attitude while battling cancer is something we can all admire. Although she's admitted to having a tough time mentally throughout her cancer journey, her upbeat mindset through her diagnosis with an aggressive form of cancer is something other people battling cancer can look up to. This is something Dr. Zuri Murrell of Cedars-Sinai says helps a cancer patient’s prognosis. He previously told SurvivorNet, "A positive attitude is really important." WATCH: Staying positive matters. “My patients who thrive, even with stage 4 cancer, from the time that they, about a month after they’re diagnosed, I kind of am pretty good at seeing who is going to be OK. Now doesn’t that mean I’m good at saying that the cancer won’t grow,” Dr. Murrell says. Focusing on the positive is part of positive psychology. According to Dr. Samantha Boardman , a New York-based psychiatrist, positive psychology means focusing on encouraging feelings and finding what brings you a sense of vitality, as opposed to focusing on the illness. For example, Noelle Kouris was only 34 years old when she was diagnosed with ovarian cancer. Similar to Mendes’ mom, she kept a positive attitude during cancer treatment and turned to humor to keep herself going. WATCH: "F*ck You, Cancer But I Say It With A Smile" Ovarian Cancer Survivor Noelle Kouris Shares Her Story “I just tried to smile every day that I walked into the center,” Kouris previously told SurvivorNet. “The nurses used to tell me that I had this light about me. And I would try to crack jokes all the time at chemo. I would just smile, and offer somebody a smile because some people were there by themselves and had nobody by their side. So, if I offered them a smile, hopefully, it brought some positivity to their day,” she continued. Mendes and Kouris are not the only ones who hasve learned the importance of positivity during caregiving or their own cancer battle. Jesus Trejo is a stand-up comedian in Long Beach, California. He became a caregiver for both of his parents after his mother was diagnosed with a cancerous brain tumor and his father was later faced with colon cancer. But instead of panicking and focusing on the devastating nature of the situation, the only child stepped up to care for his parents with love and laughter. In a previous interview with SurvivorNet, Trejo explained how he put his career aside to care for his parents in their time of need while making time to smile along the way. Stand-Up Comedian & Cancer Caregiver Jesus Trejo Reminds Us That ‘Laughter is a Game-Changer’ “The only advice I have for anyone watching this is laugh   and laugh often, laugh at yourself. Don’t take yourself seriously. Things are already bad. Because once you do that, it’s a game-changer,” Trejo told SurvivorNet. He also says the laughter itself might be brief, but “the effects of it just reverberate through your body, and can change an already bad situation into a better one.” Meanwhile, Dr. Dana Chase, a Gynecologic Oncologist at UCLA Health, also says it’s important to try to focus on the good, stay positive, and do things that bring you joy to the degree you’re able to do so amid battling a disease like cancer. “We know, actually from good studies, that emotional health, quality of life is associated with survival, meaning better quality of life is associated with better survival, better outcomes,” Dr. Chase said in an earlier interview. SurvivorNetTV Presents: Maintaining a Positive Headspace

The Importance of Advocating for Yourself

Standing up for yourself is important. If you feel that you’re being dismissed or mistreated by a doctor. Getting a second opinion is crucial if something doesn’t feel right. Experts tell SurvivorNet that no one knows your body better than you, so if you feel like something is wrong, keep pushing for answers. Dr. Zuri Murrell , a colorectal surgeon at Cedars-Sinai Medical Center, previously told SurvivorNet that sometimes, patients need to be pushy. Be Pushy, Be Your Own Advocate… Don’t Settle “From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work,” Dr. Murrell said. And as a patient, “If you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate." Ultimately, patients advocating for their health can lead to better patient outcomes. This is especially important when you find your doctor has misdiagnosed your symptoms. A component of advocating for yourself in healthcare includes going back to the doctor multiple times and even getting multiple opinions. Dr. Steven Rosenberg is the National Cancer Institute Chief of Surgery, and he previously told SurvivorNet about the advantages of getting input from multiple doctors. Cancer research legend urges patients to get multiple opinions. "If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care. Because finding a doctor who is up to the latest of information is important," Dr. Rosenberg said. Contributing: SurvivorNet Staff