Learning About Lymphoma
- Saoirse Macfarlane was pregnant when she first started experiencing sings of her lymphoma. Sadly, those symptoms were shrugged off as pregnancy-related hormone issues until after her baby was born.
- Some of Macfarlane’s symptoms included an intense itchiness, night sweats, swollen lymph nodes and fatigue. Now, she’s urging others to push for answers when they know something’s off with their body.
- 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 getting a correct cancer diagnosis and obtaining the best treatment possible while dealing with a diagnosis.
Macfarlane, 26, was 16 weeks pregnant when she started experiencing lymphoma symptoms like swollen lymph nodes in her neck and night sweats. She even developed an intense itch that took over her body.Read More
“A few weeks later, I went back because I had this excessive itch, as well as more lymph nodes which had grown. I felt palmed off with tablets. I would have itched my skin until it bled, it was that bad.”
The possibility of a Hodgkin lymphoma diagnosis first entered Macfarlane’s mind when she began to search her symptoms on Google. But ongoing trips to doctors still gave the mother of two no answers.
“The doctors were putting symptoms down to pregnancy-related hormones,” she said. “I was always fatigued, and I would have slept for 16 hours if I could, as well as having really severe night sweats. There were nights that my top would be saturated in sweat, you could have wrung out my clothes.
“With these symptoms, I just kept going back to the doctors. One doctor said they would send me for a referral for a biopsy on one of the lymph nodes which had grown on my neck… There was nothing else showing up on my bloods.”
Sadly, it wasn’t until her four week post-natal review following the birth of her son, Arlo, that her symptoms were properly addressed by a health visitor.
“She had just came to me as if she was a miracle,” Macfarlane said. “She was sitting at the other side of the room and asked me what the lumps were on my neck. I had lost a lot of weight too, as soon as I had my son. I explained this to her, and she said it looked like something further, and she red flagged me straight away.”
On June 24, 2022, Macfarlane was diagnosed with stage 4 Hodgkin lymphoma.
“It was a huge shock and I was numb, numb for quite a while and didn’t want to believe it,” she said. “I don’t even think I cried for a while.”
As she continues chemotherapy treatments, Macfarlane is sharing her story to encourage others to trust their instincts when it comes to their health.
“I just want to make these symptoms known, so that if anyone feels like something isn’t right, they should really push for investigations and medical attention. Keep going, and fighting,” she said. “I knew my own body, and I knew something wasn’t right.
“If I can help one person by speaking out, then that is what I want to do.”
Understanding Hodgkin Lymphoma
Lymphoma, in general, 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 more common. According to the Leukemia & Lymphoma Society, about 90,390 people in the United States are expected to be diagnosed with lymphoma in 2021 – 8,830 cases of Hodgkin lymphoma and 81,560 cases of non-Hodgkin lymphoma. 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.
In a previous interview, Dr. Elise Chong, a medical oncologist at Penn Medicine, explained that Hodgkin lymphoma is most often seen in younger adults. And although less common, it is generally easier to cure than non-Hodgkin lymphoma.
Dr. Chong also said lymphoma symptoms can 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.”
Lymphoma treatment 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. 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 your 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, medical oncologist at Penn Medicine, previously told SurvivorNet. “We refer to it as transformation.”
Advocating for Your Health
Whether you are currently battling cancer or worried that 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.
“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.