Learning About Lymphoma
- David Anthony Hulme, 49, was misdiagnosed with a rare condition that rarely leads to death after struggling to breath and coughing. He eventually received the correct diagnosis of lymphoma, but it was too late for him to get the care he needed.
- Early symptoms of lymphoma can be tricky to notice as they may include swollen lymph nodes, fatigue or unexplained weight loss.
- Being your own advocate can be key to coming to a correct cancer diagnosis and obtaining the best treatment possible while dealing with a diagnosis.
- It’s important that patients advocate for themselves and, in in doubt, aggressively advocate for a second opinion.
Hulme, 49, was first diagnosed with sarcoidosis in 2014. Sarcoidosis is a rare disease defined by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most often the lungs and lymph nodes, though it can also affect the eyes, skin, heart and other organs.Read More
An inquest in the UK looking into Hulme’s death heard testimony from a pathologist that Hulme didn’t get a second opinion because hospital staff was “overworked.” Tragically, the only colleague at the hospital who could have looked at Hulme’s sample was “overworked with work up to his ceiling” and had recently swapped to working part-time hours, the inquest was told.
Hulme was eventually correctly diagnosed with high grade B cell lymphoma – an aggressive type of blood cancer. Even after starting proper treatments for the lymphoma located in his right lung, the father of two died just a month after his correct diagnosis.
“He was such a fantastic husband and dad to our boys, and to this day I still feel myself going to speak to him and then realizing he’s not here anymore,” his wife of 19 years said. “We all miss him every single day.
“Since he died, I feel like time has stood still for me. He was my soulmate and I really can’t imagine the rest of my life without him.”
Lymphoma, in general, is a type of blood cancer. Blood cancers can affect the bone marrow, blood cells, lymph nodes and other parts of the lymphatic system. The Leukemia & Lymphoma Society reports that every 3 minutes, one person in the U.S. is diagnosed with leukemia, lymphoma or myeloma.
More specifically, lymphoma is a cancer of the immune system that begins in the white blood cells called lymphocytes. Lymphoma begins when lymphocytes develop a genetic mutation that makes them multiply much faster than normal.
This mutation also forces older cells that would normally die to stay alive. From there, the quickly multiplying lymphocytes collect and build up in your lymph nodes, the small glands in your neck, armpits and other parts of your body.
There are more than 40 different types of the disease, but Hodgkin lymphoma and non-Hodgkin lymphoma are the main two sub-categories with the latter being much more common. The type of white blood cells linked to the disease determines the distinction. If doctors are unable to detect the Reed-Sternberg cell – a giant cell derived from B lymphocytes – then it is categorized as Non-Hodgkin lymphoma.
You might be at a higher risk for lymphoma 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
Signs of Lymphoma
One thing to note about lymphomas is that this type of cancer often creeps in quietly, without symptoms. And even when symptoms do show up, they don’t necessarily point directly to cancer.
In a previous interview, Dr. Elise Chong, a medical oncologist at Penn Medicine, explained that lymphoma symptoms could be difficult to detect.
“The symptoms of lymphoma, especially if you have a low-grade lymphoma, often are no symptoms,” Dr. Chong explained. “People say, but I feel completely fine, and that’s very normal.”
People with lymphoma do not always have symptoms, but common ones are:
- Swollen glands in your neck, armpit or groin
- Night sweats
- Unexplained weight loss
- Feeling tired
- Swelling in your stomach
No matter what, it’s important to communicate anything unusual happening to your body with your doctor. Even if you think there’s nothing to worry about, it’s good to rule out the possibility of more serious issues.
Advocating for Your Health
As we’ve seen in the case above, healthcare professionals do make mistakes. So, it’s always important to pay attention to the changes happening to your body, insist that medical professionals investigate those changes and think about getting second opinions.
You have every right to insist that your doctors investigate any possible signs of cancer, other avenues for treatment or the potential of a different diagnosis. And if you simply don’t know what’s causing a change to your body, you should still seek professional help. You never know when speaking up about a seemingly unimportant issue can lead to a very important diagnosis – cancer or otherwise.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. “And I think that that’s totally fair. And me as a health professional – that’s what I do for all of my patients.”
In a previous interview with SurvivorNet, April Knowles explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn’t feel right.
“I wanted my doctor to like me,” she said. “I think women, especially young women, are really used to being dismissed by their doctors.”
Figuring out whether or not you actually have cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way to ensure you’re getting the care and attention you need.
Another thing to remember is that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.