Following Her Health Intuition
- Rebecca Dennis, 22, was just about to complete her apprenticeship and pursue her dream job in policy analysis when life suddenly threw her—and her career plans—off course.
- After finding the lump in her neck, she was told by doctors “it was probably nothing,” but unfortunately, it wound up being very much the opposite. Rebecca had an aggressive, Stage 2 anaplastic large cell lymphoma (ALCL), a subtype of non-Hodgkin, which is a type of blood cancer.
- Advocating for yourself is important when you’re trying to get an accurate diagnosis. If you have persistent symptoms that look like lymphoma and your doctor hasn’t sent you for a biopsy, it might be worth seeking out a second—or third—opinion.
After finding the lump in her neck, she was told by doctors “it was probably nothing,” but unfortunately, it wound up being very much the opposite.Read More
“Just getting diagnosed was a trauma,” the South Londoner told MyLondon of learning about her white blood cell disease two months after finding the growth. Prior to finding out about her illness, Rebecca’s health had started to deteriorate with extreme fatigue and she oddly starting feeling itchy all over her body—she knew then that it was most likely lymphoma.
As more symptoms presented, Rebecca finally got her answer. Sadly, not the answer she’d hoped for, but for most patients, it is a relief just to know what is wrong, despite how severe the news.
“Once they’d given me an ultrasound, they were quite concerned,” she recalled of round two at the hospital. “They did a couple of biopsies just because the lump was in a bit of a precarious place in terms of the nerves. So if they hit a nerve wrong, my face could have been paralysed too.”
“The world just fell through,” she said when she first heard the words from her doctor that she had cancer.
“I couldn’t hear anything else. She started talking about the science behind the cancer – it’s a rare type of large cell lymphoma which only 200 people per year are diagnosed with in the UK. She was telling me the difference between B cell and T cell lymphomas and all of this stuff, but I couldn’t hear a word.”
“I’m thinking, I want to know what is going to happen to me. Am I going to die? Am I gonna have to have chemo? What’s going on?”
Rebecca described the devastating scene: her mother was crying, and Rebecca was just grasping for answers, numb with shock.
“It was one of the scariest moments of my life,” she admitted. “Everyone, all the doctors are telling you, it’s probably nothing, your friends and family want to reassure you. So they’re all saying you’ll be fine and then all of a sudden it’s not nothing.”
Starting Treatment For Lymphoma
Although Rebecca was “so close to the finish line” with completing this final step before officially entering adulthood, she was unfortunately forced to go on sick leave as she begins chemotherapy. She has six treatment cycles every three weeks until November, then she will be taking a targeted drug through the end of the year.
Luckily, doctors are telling Rebecca that her prognosis is positive. So now, it’s just conquering the disease, step-by-step.
Rebecca also faced the “overwhelming” decision to freeze her eggs. Like most young cancer patients, she hadn’t even though of that part of the uphill battle, as there’s so much to process already. Sadly, cancer treatment can affect your fertility, so in order to heighten your chance to reproduce, you have to have egg-retrieval surgery prior to starting chemo.
The silver lining through the whole horrific ordeal is that Rebecca has received “an overwhelming amount of support from her friends and family.”
“Just knowing how many people actually care just makes you feel really, really loved,” she expressed. “It’s really emotional, actually. It’s really overwhelming the amount of love that I’ve received,” she added.
Finding Lymphoma Early
Cancer is easiest to treat, and most likely to be cured, when doctors catch it early. We have mammograms to find breast cancer and colonoscopies to pick up colon cancer in its earliest stages. Why isn’t there a screening test for lymphoma?
“Screening is a test we do with the goal of detecting lymphoma in a very early state,” Dr. Elise Chong, medical oncologist at Penn Medicine, tells SurvivorNet. “For something to be a good screening test, we need to see that the screening helps people live longer, and helps people have better outcomes.”
Doctors currently don’t have evidence showing that finding lymphoma early helps people live longer. “That’s the second part of screening that we need to see,” Dr. Chong adds. “Because we don’t meet those two criteria, we don’t have a good screening test for lymphoma yet, although people are certainly working on this.”
As for your risks?
“The patients who are diagnosed with lymphoma early, typically it’s luck,” Dr. Chong says. They may have had a symptom that made their doctor check them, or the cancer showed up on a scan or blood test that was done for another reason.
Until an effective screening test does become available, you can increase your odds of finding lymphoma early by knowing whether you’re at risk, and staying alert for symptoms.
You might be at higher risk for this cancer if you:
- Have been infected with the HIV or Epstein-Barr virus
- Had an organ transplant
- Have a family history of lymphoma
- Have been treated with radiation or chemotherapy drugs for cancer in the past
- Have an autoimmune disease
Let your doctor know about these risks, so he or she can keep a close eye on you. You may need more frequent checkups and tests.
Also watch out for lymphoma symptoms. The most common ones are:
- Swollen glands in your neck, armpit, or groin
- Night sweats
- Weight loss without trying
- Feeling tired
- Swelling in your belly
Many different conditions, including infections, cause these same symptoms. So don’t panic if you have them. It’s most likely something more benign, but still worth getting checked out. It’s also a good idea to see your doctor for any unusual symptoms, even if they’re not on this list.
How Doctors Diagnose Lymphoma
Most people with lymphoma see their doctor because they have a swollen gland that won’t go away, or they just don’t feel right. If you suspect there’s a problem, you can start with a visit to your family doctor.
The doctor will first ask about your symptoms and risk factors. Then you’ll have a physical exam, looking for swelling in your lymph nodes and belly. Your doctor will try to rule out other causes, such as an infection, which may require that you get a blood test.
The only way to confirm that you have lymphoma is with a biopsy — removing a small piece of a lymph node for testing. Because this test is somewhat invasive, your doctor won’t do it unless he or she has a strong suspicion that you have lymphoma.
A lab will test the sample to see if it contains cancer cells. The biopsy results can also show what type of lymphoma it is.
You might also need imaging tests such as an x-ray, computed tomography (CT), magnetic resonance imaging (MRI), or positron emission tomography (PET) scan to find out what’s causing your symptoms, and if you do have lymphoma, to determine its stage.
Advocating for yourself is important when you’re trying to get an accurate diagnosis. If you have persistent symptoms that look like lymphoma and your doctor hasn’t sent you for a biopsy, it might be worth seeking out a second opinion.
Heather was lucky to have more telltale symptoms, which led her—and her doctors—to her correct diagnosis. Pay attention to your body, and don’t be afraid to speak up until you are heard—and properly tested.
Although Heather’s career may be on hold temporarily, she will get through this and surely start her career path—whatever it may be—stronger than ever.