How Did You Know?
Last updated: November 2023
I get the question a lot, "How did you know you had non-Hodgkin lymphoma?" My answer... I had no idea where my NHL came from, when it started, nor what I was in for.
A year earlier, I woke up one morning with a very strange stiff neck and swelling. Since I was going to be out of the United States for 10 days, my general practitioner referred me to a specialist. He, in turn, suggested it looked like a highly suspicious and cancerous lymph node. Why? When pressed it was not painful to the touch. Swollen lymph nodes due to an infection are often painful when pressed. No stress with that casual observation. Two-needle biopsies just days apart showed no signs of cancer, but my MD was not satisfied.
Upon my return to the U.S. and with no improvement in my swelling, while on antibiotics I was admitted for a fun-filled in-hospital endoscopic biopsy. Sure enough, it turned out to be an infected lymph node. Different antibiotics finally worked. Little did I know then that a swollen lymph node in your neck can be (but not always) a precursor to NHL.
A non-Hodgkin lymphoma diagnosis
A year passes, COVID is running its course, and I am now feeling a growing discomfort under my right ribcage. One evening in early July, the pain skyrockets and results in my making an emergency room visit. An enthusiastic ER doc offers a misdiagnosis and a referral to 2 different specialists for pancreatic cancer. How many ways can you spell stress?
Over the next few days, I begin to lose a significant amount of weight and am feeling full after a few bites of food. I go in for yet another in-hospital biopsy, plus a CAT scan. This time, the testing reveals stage 2 diffuse large B-cell non-Hodgkin lymphoma (NHL). In the next 30 days, I lose almost 40 pounds.
Waiting for answers
While waiting for answers and treatment options, I learn from my online research that lymphomas are treated with chemotherapy, immunotherapy, and radiation, depending on what you have and its progression. After countless and frantic internet searches, I discover it is impossible to fully understand what treatments I might expect. My MD explained that treatment for my NHL was very specific to my situation. He narrowed it down quickly by saying… “Dennis, you need a chemotherapy treatment called R-CHOP. It consists of 1 dose every 3 weeks, for a total of 6 treatments. It is a rather new treatment protocol and we have seen great success with it at Stage 2.” A chemo port was installed in my chest and within days I was getting my first chemo infusion.
I learned from my internet searching that just under 10,000 people in the United States have been diagnosed annually with non-Hodgkin lymphoma and that the disease can impact just anyone - men, women, and children. The disease is mostly found in young adults and in folks over 55. I certainly fell into the last group being age 77.
How did I get lymphoma?
As a prostate cancer survivor, I had an understanding that some cancers can demonstrate a hereditary link especially if a first-degree relative such as a parent, sibling, or child has been diagnosed with that particular cancer. My daughter had been diagnosed with a form of skin lymphoma a few years before. One connection was made.
I learned that certain chemicals and drugs may trigger an NHL response such as herbicides and insecticides but also saw that the link is still under investigation. A second connection was made.
Radiation such as the 40 treatments I had for prostate cancer combined with hormone therapy may have also triggered an NHL response. A third connection was made.
A weakened immune system, along with autoimmune diseases and age all can be contributing factors. And the list of possibilities goes on and on.
So back to the original question: How did I know?
Here is my take. Unless you are diagnosed by a medical professional, it is difficult, if not impossible, to know what you are facing. My advice: do not ignore symptoms and/or subtle signs. Nothing is gained by waiting and much can be lost by doing so. Here are a few signs and symptoms I should have looked for and reacted to sooner:
- Enlarged lymph nodes in my neck
- Sudden severe weight loss
- Feeling very tired
- Chest pain/pressure
- Shortness of breath/cough
I caught my NHL early because I did not ignore the pain in my chest, and so far, I am and remain in full remission. My suggestion: Keep your eyes, listen to your body, speak up and get a check-up.
How do you feel about your support system?