A Lymphoma Diagnosis & the Importance of Advocating for Yourself
- Paris Wells, 28, was diagnosed with stage 2 Hodgkin lymphoma shortly after being told the lump in her neck was due to a cold. Luckily, she got a second opinion — a reminder that advocating for yourself in healthcare settings is key.
- Lymphoma is a type of blood cancer. Early symptoms of the disease can include swelling of lymph nodes in your neck, armpits or groin, persistent fatigue, fever, night sweats, shortness of breath, unexplained weight loss and itchy skin.
- Lymphoma treatment, in general, depends greatly on the nature of your specific diagnosis. One of our experts notes, “unlike other cancers, where advanced stage is a death sentence, that’s certainly not the case for lymphoma.”
When Wells first noticed the lump, she tried to call her doctors for an appointment.Read More
Wells then had a scan followed by a biopsy — that’s when she got the answers she needed.
“It came back to be cancer,” Wells said. “I was diagnosed within four weeks because of her [the aunt].”
To treat her stage two Hodgkin lymphoma, Wells underwent eight rounds of chemotherapy and 17 rounds of radiotherapy. Today, she is cancer-free but still reeling from the emotional effects of her cancer journey.
“I am now cancer-free, but I will be having counseling to deal with life after cancer,” she said. “In the same week as being diagnosed my boyfriend of nine years ended things with me.
“It was a lot to take on as well as being told you have cancer. I still struggle now with how he couldn’t even be there as a friend for me, but hopefully the counseling with help with everything.”
Lymphoma 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 a blood cancer.
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.
It’s important to note there are more than 40 different types of lymphoma. Hodgkin lymphoma and non-Hodgkin lymphoma are the main two sub-categories with the latter being more common. Diffuse large B-cell lymphoma (DLBCL) is the most common form of lymphoma.
The type of white blood cells linked to the disease determines the distinction between Hodgkin lymphoma and non-Hodgkin lymphoma. If doctors are unable to detect the Reed-Sternberg cell — a giant cell derived from B lymphocytes — then the cancer 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 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 with SurvivorNet, 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.”
While people with lymphoma do not always have symptoms, some possible signs are:
- Painless swelling of lymph nodes in your neck, armpits or groin
- Persistent fatigue
- Night sweats
- Shortness of breath
- Unexplained weight loss
- Itchy skin
No matter what, it’s important to communicate anything unusual happening to your body with your doctor. Even if there’s nothing to worry about, it’s good to rule out the possibility of more serious issues.
Lymphoma Treatment Options
Lymphoma treatment, in general, depends greatly on the nature of your specific diagnosis. For non-Hodgkin lymphoma patients, their cancer is more likely to spread in a random fashion and be found in different groups of lymph nodes in the body. Hodgkin lymphoma cancers, on the other hand, are more likely to grow in a uniform way from one group of lymph nodes directly to another.
And even if you’re not diagnosed until a later stage, Dr. Chong assured SurvivorNet that “unlike other cancers, where advanced stage is a death sentence, that’s certainly not the case for lymphoma.”
“We have many treatments with which people can either be cured with advanced stage lymphoma or have very good remissions,” Dr. Chong said. “So it doesn’t change how treatable someone is, even when they do have advanced stage lymphoma.”
Some lymphomas, called indolent lymphomas, might not even need to be treated right away because they’re slow-growing. In this case, careful monitoring — including imaging scans such as PET/CT — is used to track the progress of the cancer and gauge whether it needs treatment yet.
“Where I use PET/CT in my practice quite a bit is if I’m observing a patient … and there is some new symptom or situation which makes me concerned that the patient may be changing from an indolent lymphoma to a more aggressive lymphoma,” Dr. Jakub Svoboda, a medical oncologist at Penn Medicine, previously told SurvivorNet. “We refer to it as transformation.”
The Importance of Advocating for Your Health
Whether you are currently battling cancer or worried you might have it, it’s always important to advocate for your health. Cancer is an incredibly serious disease, and you have every right to insist that your doctors investigate any possible signs of cancer.
And, as we saw in the case above, it’s always crucial to speak up about any changes to your health — regardless of whether you suspect there’s anything sinister behind them.
“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, survivor 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.