My introduction to lymphoma came one, quiet July afternoon in 2008 as I was sitting at my desk at work. My husband called. He had been feeling poorly for the last couple of weeks while we were on vacation and had just been to see the doctor.
“The doctor said I’ve got one of three things,” he calmly reported. “But the only one I can remember is lymphoma.” He went on to say that he was calling from a hospital bed where he had a few things stuck in and on him. (Before I lost control of my thoughts, I was reminded of an incident two years earlier. Then, my husband had left me a voice mail. The message went something like this: “My appendix burst. I’m in the hospital. You can stop by if you want to.”)
Our life plummeted into the realm of conscious uncertainty. Non-medical people, we searched all over the Internet, talked to family, friends, friends of friends, doctors, etc., to find out everything we could about this kind of cancer.
Soon enough, we were reminded of the danger of Internet searches. There is almost too much information — a lot of it is downright scary and some of it is ultimately inaccurate. Even without really understanding my husband’s current condition, we were already contemplating the worst possible outcome.
Types of Lymphoma
There are two main types of lymphoma — Hodgkin’s Lymphoma (also called Hodgkin’s Disease) and Non-Hodgkin’s Lymphoma. Both types develop in the lymphocytes, white blood cells that are an important part of the body’s immune system. The two types have similarities, but there are definite distinctions.
Lymphocytes have two main cell types: B cells or T cells. With lymphoma, either the B cell or the T cell becomes abnormal; the first abnormal cell quickly divides and then subsequent abnormal cells divide, encroaching upon and destroying other lymphatic cells. And, while lymphoma originates in the body’s lymphatic system, Hodgkin’s Lymphoma and Non-Hodgkin’s Lymphoma can spread to bone marrow and other organs such as the liver and spleen.
Symptoms and Signs
My spouse had been complaining about aching, swollen lumps in his neck. He had also been having night sweats and fever. These are typical symptoms for both Hodgkin’s Lymphoma and Non-Hodgkin’s Lymphoma. Other symptoms include breathing problems, fatigue, itching, unexplained weight loss, and swollen lumps in the armpits and/or groin.
The doctors told us it was not uncommon for either type of cancer to appear in adults in their 50’s, but, typically, Hodgkin’s Lymphoma appears in children and young adults. In contrast, the risk for developing Non-Hodgkin’s Lymphoma increases with age and typically appears between the ages of 40 and 70.
My husband, a seemingly healthy man who watched his diet and regularly exercised, was in his early 50’s.
After several tests, there was little doubt that my husband had lymphoma, but in order to treat it, the doctors needed to know exactly what type it was.
There are several diagnostic techniques used, either alone or in combination, to make the diagnosis between Hodgkin’s Lymphoma and Non-Hodgkin’s Lymphoma. These include blood tests, thorough physical examinations, biopsies of bone marrow, and chest x-rays. The definitive test, however, is the tissue biopsy of part or all of an affected lymph node.
The hospital did a biopsy of one of the lumps on his neck on a Friday. The results would not be available until early the next week. So, it was back to the Internet to see what else we could learn and worry about. Meanwhile, my spouse was suffering and more painful lumps were fast appearing. Overwhelmed with both too much general and too little specific information, we waited for news from the lab.
Under the microscope, the presence of an abnormal B cell called the Reed-Sternberg cell, a particular kind of lymphocyte, indicates Hodgkin’s Lymphoma. Diagnosis is not as easy for Non-Hodgkin’s Lymphoma; there are over 30 different types of Non-Hodgkin’s Lymphoma which include various types of cells and cell markers.
Finally, on Monday, we learned we were dealing with Anaplastic T cell Non-Hodgkin’s Lymphoma. At last, we knew the enemy.
Now that we knew the type of cancer, we had all the usual questions about treatment. Chemo? Radiation? How long? How much?
Like all cancers, lymphoma is characterized by stages which define the extent or severity of the cancer, and treatment differs depending on the cell type and stage. Treatment for Hodgkin’s Lymphoma can include radiotherapy, chemotherapy or a combination of the two. Stem cell or blood marrow transplantation can be recommended in more severe cases. Non-Hodgkin’s Lymphoma is typically treated with chemotherapy; on rare occasions, radiation alone or in combination with chemotherapy is utilized.
The type and severity of lymphoma determine the response to any particular treatment. Other treatments for lymphoma can include radioimmunotherapy or immunotherapy alone; surgery is rarely a treatment option.
In my spouse’s case, he had Stage III (of I to IV with IV being the most severe) of an aggressive type of Non-Hodgkin’s Lymphoma. That meant hitting him hard and fast with chemotherapy. They began it almost immediately. The first treatment was excruciating and weakened him, but it provided great results. After a week, he was released with a treatment plan that included five additional chemotherapy sessions.
As we left the hospital, I remember watching my husband – stooped over, thinner by 30-some pounds, frail and weak – as he carefully got into the car in the parking lot. I wondered whether he would ever return to his vibrant, irreverent self.
Statistics for New Cases and Deaths
In 2008, my spouse was one of the estimated 74,340 people to be diagnosed with lymphoma. In that same year, it was estimated that 20,150 people with lymphoma would die. Staggering statistics that we couldn’t seem to comprehend at the time.
The American Cancer Society’s Facts & Figures 2010 lists the expected new cases and estimated deaths for men and women in the U.S. for 2010 for lymphoma as follows:
Estimated New Cancers (2010)
- Hodgkin’s Lymphoma – 8,490
- Non-Hodgkin’s Lymphoma – 65,540
Estimated Cancer Deaths (2010)
- Hodgkin’s Lymphoma – 1,320
- Non-Hodgkin’s Lymphoma – 20,210
According to the American Cancer Society, the 5-year survival rate for Hodgkin’s Lymphoma is 85%; the 10-year survival rate is 81%. It is much tougher to pin down survival rates for Non-Hodgkin’s Lymphoma. Prognosis varies depending on the type of Non-Hodgkin’s Lymphoma, as well as other factors including the stage, the cell type, blood counts, other medical problems, etc.
Since his last chemotherapy treatment in November 2008, my husband’s periodic scans have been clean and his prognosis is excellent. He’s back to his old self, with only two visible scars (one from the biopsy and the other marking the location of the port used to administer chemotherapy), the scans, and doctor’s appointments to remind us that life is tenuous.
While I continue to scour information about both types of lymphoma, my husband rarely, if ever, speaks about it, although he is conscientious about his scans. Looking back, the most angst-filled time during the entire ordeal was while we were waiting for the final diagnosis. After all, looking at the facts and figures, it would seem Hodgkin’s Lymphoma might be the ‘preferred’ disease, but it was not that simple. It was never necessarily that we thought one type of lymphoma was more ‘optimistic’ than the other; we just desperately needed to know for treatment purposes. Besides, I believe there are too many other factors involved in survival, i.e., the severity, the treatment, response to treatment, etc., that overshadow any mere numbers linked to a particular type of disease. In fact, I honestly believe the most important factor is the patient’s attitude.
In my husband’s case, he just had lymphoma – didn’t matter which to him. He just wanted to put it behind him. He went back to work as soon as he could and worked around his chemotherapy, taking little time off. He did not let cancer stop him, he did not let it define him and, unless he told you, you would never know.
by Linda Prior