These days, patients don’t have to go far to stumble across misinformation about a particular condition or procedure. It’s a problem in all areas of healthcare, but misinformation is especially prevalent with cancer.
You might think the problem lies solely with the internet, but misinformation about cancer is spread in many different ways. Patients can also be misinformed by well-meaning friends and family members, and sometimes even by medical practitioners.
To that point, I recently saw a patient who had been diagnosed with Hodgkin’s lymphoma. He was told that he had only 6 months to live. Fortunately, he sought out a second opinion and found that, in fact, his cancer was very treatable and even curable. To think, if he had not questioned the diagnosis and sought information from other sources, he could have been needlessly preparing for the end of his life.
Since there are different types of lymphoma, patients often are misinformed when they are diagnosed with this cancer. Of course, every patient’s case is different, but these are some of the most common myths people hear when they are diagnosed with lymphoma.
Myth #1: A diagnosis of lymphoma is a death sentence.
Lymphomas are blood bone marrow cancers that affect the lymphatic system. There are several different types of lymphoma, including Hodgkin’s lymphoma and Non-Hodgkin’s lymphoma. The prognosis for each patient will depend on the type and severity of the diagnosis, as well as how early it is detected.
Treatments are very effective for some types of lymphoma, particularly Hodgkin’s lymphoma, when detected early on. In fact, medical advances over the last 50 years have made Hodgkin’s lymphoma one of the most curable forms of cancer. According to the Leukemia & Lymphoma Society, the 5-year survival rate for Hodgkin’s lymphoma is approximately 88%, more than double the survival rate 50 years ago. Many with Hodgkin’s lymphoma are able to go on and lead active lives after being cured. Chicago Cubs first baseman Anthony Rizzo is a prime example, as is Kansas City Chiefs safety Eric Berry.
Although survival rates for Non-Hodgkin’s lymphoma are lower than Hodgkin’s lymphoma, the five-year survival rate is still estimated to be about 70%. Therefore, the majority of those diagnosed with Non-Hodgkin’s lymphoma also survive the disease. This is why it is critical to educate yourself with reputable information from credible sources.
I also recommend that patients always seek a second opinion, regardless of the impression left by the first provider. A second opinion serves to validate or refute the first opinion. Additionally, second opinions are helpful because the patient has gathered information from the first appointment and will therefore know which questions to ask.
A major point worth making: It is critically important to play an active role–rather than a passive role–in your own care. If a physician makes you as though you can’t ask questions, it just makes your decision easier. Chances are, that physician is not best suited for your needs as a patient.
Myth #2: Patients who are diagnosed with Hodgkin’s lymphoma are “lucky” compared to those diagnosed with Non-Hodgkin’s.
Wow! This is false on so many levels.
To begin with, physicians will use information from peer-reviewed studies and NIH clinical trials to predict survival rates. If you have been recently diagnosed with this condition, it is likely you were never directly part of these studies. Furthermore, there are so many variables that go into determining these factors, such as simultaneously occurring medical conditions, smoking, diabetes, alcohol use, prior history of malignancy, family history, etc.
Now let’s be honest, no one recently diagnosed with cancer considers themselves lucky. They are scared and will go to whatever source of information they can find to read more about their condition.
The fact is, those given a diagnosis of Hodgkin’s lymphoma do not all survive, and those with non-Hodgkins may very well beat the disease! Well-meaning people sometimes tell patients with curable cancer that they are “lucky,” but these patients will still often have to undergo cancer treatments to achieve remission or cure.
While positive support and encouragement is appreciated by those undergoing cancer treatment, it’s also important to recognize how physically and mentally stressful treatment can be. If you know a friend or family member is going through any type of cancer treatment, try to lend your support however you can. Hodgkin’s lymphoma may be curable, but that doesn’t mean it will be an easy fight.
Myth #3: Non-Hodgkin’s lymphoma refers to one specific type of lymphoma.
Hodgkin’s and Non-Hodgkin’s lymphoma have different subtypes that may indicate different treatment approaches and different prognoses. In fact, Non-Hodgkin’s lymphoma has more than 30 different sub-types. Non-Hodgkin’s lymphoma is also more common than Hodgkin’s lymphoma.
Lymphomas are grouped as Hodgkin’s or Non-Hodgkin’s based on the type of cells present. Lymphoma is typically categorized as Hodgkin’s lymphoma if Reed-Sternberg cells are present. Reed-Sternberg cells, named for the scientists who discover them, are large malignant cells. One more monkey wrench to throw out here: Reed-Sternberg cells can be seen in other types of lymphomas, not just Hodgkin’s lymphoma.
Non-Hodgkin’s lymphoma is categorized by the type of lymphocyte they develop in. A lymphocyte is a type of white blood cell in the lymphatic system. Non-Hodgkin’s lymphoma is also typically categorized as being aggressive or slow-growing.
If possible, patients should seek a second opinion and treatment from an oncologist who specializes in lymphoma to get the most accurate diagnosis. The diagnosis is often made through biopsy, histopathology, and phenotypic expression of the sample(s), PET scans, and extensive blood work. Perhaps most importantly, physicians can gather a lot of information by listening to the patient tell their history.
It is important to remember that every patient diagnosed with cancer–not just lymphoma–will have different experiences. I encourage everyone who has been diagnosed with cancer to educate themselves with reputable medical information, seek second opinions with specialists, and most importantly, never give up until you get the answers you need.
Ultimately, we all must remember that textbooks are written to educate and serve as guidelines medical students and physicians. Our bodies don’t read textbooks and frequently follow a different course.
Melding “the art and science behind medicine” is truly exemplified by combining one’s mastery of clinical medicine with a personalized approach to patient care.