• Unexplained loss of more than ten percent of body weight.

• Fever above 100 degrees Fahrenheit (about 38 degrees Centigrade) for more than one week.

Finally, some adults report an aching of the affected lymph nodes if they drink alcohol, although this phenomenon appears not to be recognized by many authorities.

The following story is that of a registered nurse, Nicole, who had a long and difficult experience obtaining a correct diagnosis. Nicole first describes how her symptoms were ignored or misinterpreted:

In May of 1997 (I remember feeling pretty awful at our Mother's Day dinner), I started having difficulty breathing. At first I just put it off as a flare-up of my mild asthma. Also, it was spring and could have been my allergies. I tried to self-medicate for about two weeks and finally gave in and went to the doctor. Well, to my dismay, the day I chose to go to the doctor was my regular general practitioner's last day of work before maternity leave. She was only working half a day that day, so I had to see the physician's assistant.

When I saw him, he took all of five minutes with me and brushed me off, saying there was nothing wrong with me, that my lungs sounded fine. This angered me, because I had spent twenty minutes in the waiting room coughing before he saw me. I also had used my asthma inhaler in the parking lot just to be able to walk in the building. He gave me a breathing treatment to placate me, increased my asthma medicines and sent me on my way.

After this, I waited two weeks before going back, waiting for my doctor's replacement to get settled. I went in to see the doctor and got the same treatment as with the physician's assistant. By this time, I had had friends at work listen to my lungs and they were concerned that I had very decreased breath sounds on the right. I also started noticing that my neck seemed thicker. When I asked the doctor about my neck, she felt it, and said it was fine, it was just my obesity. By now, I'm getting upset. I feel as if I'm being treated like a hypochondriac when in reality I usually wait too long before seeking medical attention, so I end up with pneumonia instead of bronchitis, and so on.

A week later, I went back, begging for some tests, anything. Until now, the only thing done was to listen to my lungs and give me breathing treatments. Also, by this time, my nails were blue, I couldn't walk to work as usual without gasping for air and my heart rate was 140.

I later found out that I was also really frightening my daughter because I would start coughing uncontrollably and end up gagging, followed by being so out of breath that the only way I could breathe was bent over on all fours on the floor.

After living with pronounced discomfort for too long, Nicole finally was given some basic diagnostic testing. However, her care continued to be mishandled:

I was finally given a chest x-ray after my third visit that month. (I believe more to placate me than anything else.) Well, the radiologist wouldn't let me leave the office until he called my doctor. It turned out that I had pneumonia and fluid in the base of my right lung. I talked with the doctor over the phone, and she said she would call in an antibiotic to my pharmacy. This was Friday evening, and when I went to the pharmacy, they hadn't received a call. I went home thinking she hadn't called yet and checked back after an hour. Still no prescription. Since this doctor was a fill-in, she didn't take calls, so I couldn't call her through the service. I started calling pharmacies and finally found my prescription across town.

When I got the drug, the instructions didn't seem right to me. First, it wasn't a drug commonly used to treat pneumonia. (When I had told her what I was on earlier that year for pneumonia, her only comment was that it was too expensive). Second, the duration wasn't long enough for this drug to act. I remembered this from medical microbiology class in college. Since it was the weekend, I decided to start the drug, thinking I could call the office Monday morning. Sunday I went to work and my condition scared the physician's assistant I was working with. He offered to give me a breathing treatment right then (it's illegal to use state funds and equipment for employees). I was also the only nurse on duty that day, so I couldn't go home. By Monday, I was even worse. I talked with the head pharmacist at work about my prescription and he echoed my concerns. I finally called the office and insisted on getting a referral to someone else. I wasn't going to see this doctor again!

It turns out there had been other complaints about this doctor. They asked me to see someone else in the clinic and got me in right away as a special favor. He started me on a different antibiotic and even gave me enough samples so that I didn't have to buy it. He also put me on prednisone. This seemed to be the magic pill for me (prednisone helps to reduce the size of many lymphomas). When the prednisone stopped, the symptoms got worse. I went back to him a week later because of this. Rather than start me on prednisone again, he put me on a third antibiotic and bed rest for a week. He was going to be out of town the following week, so he gave me a return-to-work slip at that visit.

A week later, I was worse. My family now was very concerned and several times tried to get me to go to the emergency room, but I always refused. I was still blue, especially around my mouth (acrocyanosis), I was still coughing and had trouble breathing. To make matters worse, my head felt like it was about to explode. I was supposed to return to work in one day, my antibiotics were complete (three rounds now), and my doctors were out of town.

Angry and frightened, Nicole realized she must demand proper care:

I decided to make a very bold move. I went up to the clinic, passed a note to the nurse saying I was worse and wanted a plan, blood work, anything-and sat down in the office and waited. No appointment. I was seen within fifteen minutes. This doctor (the fourth in six visits now) did a complete exam. She was very concerned, didn't like the way I looked. She drew blood, sent me for another chest x-ray, and sent me to the hospital to have my blood oxygen measured. After all of this, she called me at home and said she wanted me to see a specialist because my chest x-ray was even worse than before. She considered putting me in the hospital that night, but instead, called a pulmonologist friend at home and made me an appointment for the next day.

I went to see the lung doctor and fifteen minutes later was admitted to the hospital. He did not see the mediastinal tumor on the chest x-ray, but he did see an unusual elevation of my diaphragm on both x-rays. He talked about aggressive testing and joked about insurance companies hating him because he was so expensive. His expensive and aggressive tactics saved my life.

The most accurate way to diagnose a lymphoma is by whole-node or excisional biopsy, but, as symptoms of non-Hodgkin's lymphoma are so varied and can look like the symptoms for more common conditions, a number of tests or treatments might be suggested before NHL is suspected and definitively diagnosed.

The early guess

As illustrated in Nicole's story, your family doctor or primary care physician may be the first to suspect a lymphoma, perhaps after treatment for several related conditions have not been successful. Swollen eyes, for example, can be related to an overactive thyroid, allergies, or ocular NHL, among other conditions, but most would argue that thyroid or allergy testing is the sensible first choice. Because doctors are taught, "When you hear hoofbeats, look for horses, not zebras," it's not unusual for several tests and remedies for more common illnesses to be attempted before a series of tests to detect a possible cancer are ordered:

My husband had increasingly bad back pain for over a year. It was first diagnosed by our primary doctor as a jogging injury. He was given muscle relaxers, and he bought new running shoes and a new office chair with better lumbar support. Several months later he returned to another doctor in the same medical practice and explained that the pain was worse, not better. This time, because the pain had spread from his lower back upward, he was diagnosed as having shingles-a form of chicken pox-even though no blisters were present. A few months later he went to a nearby hospital emergency room in the middle of the night with severe back pain and was diagnosed as having a kidney stone. They sent him home with a sieve to urinate into and discharged him to our primary doctor's care. When no stone passed, our family doctor, whose father had died of lymphoma, ordered a sonogram. The demeanor of the technician who did the sonogram became increasingly serious as the test progressed. It showed a suspicious mass. My husband had a follow-up CT scan that showed, in the words of the radiologist, "a mass most consistent with lymphoma."

After my husband's CT scan, we were referred to an oncologist and then a surgeon for abdominal surgery. This scheduling of doctor visits, surgery, and recovery took another sixty days. After surgery, the tissue was sent to NCI and took thirty days for analysis. Altogether a tentative diagnosis took over fourteen months, and we waited two more months from the CT scan through full diagnosis to the beginning of treatment.

The narrowing diagnosis

If, following a physical examination, x-ray, sonogram, CT scan, or MRI of a suspicious mass, your doctor has received word that you may have lymphoma, he will discuss choosing an oncologist with you. Initially, you may feel comfortable with whomever he recommends, particularly if his style is simply to recommend instead of discuss and you have been comfortable with this approach in the past, but it is in your best interest to research these choices independently as well.

Here's another survivor's account of one step in her unfolding diagnosis, one that shows the difficulty of determining clearly what disease process is underway:

My first and only symptom was an enlarged and growing node in my right groin. I was relatively new to our particular area of the country (we had just moved about eight months prior to this), so I first visited an Ob-Gyn specialist with whom I was not familiar, but who was covered under my health plan. He had a jaded moldiness about him, which was slightly nauseating. I allowed him to finish the examination, during which he dug around and tried to feel as much of the enlarged node as possible, exclaiming, "That's quite a gland you've got there, dear!" The only decent thing he did was to refer me to a local surgeon, who happened to be very competent, both in manner and in execution of the surgery. He must have known that what he removed during the surgery was malignant. I had not really faced that possibility yet. He referred me to the hematologist-oncologist who would deliver the diagnosis and see me through the rest of my treatment.

Definitive diagnosis

After the doctor suspects lymphoma, often after having ruled out more common possibilities, the next step is a biopsy of the area. A biopsy is the most important of diagnostic tests. Types of biopsies are needle biopsies (during which a needle is inserted into the node to aspirate cells from the node which can be tested for cancerous cells) and lymph node biopsies (during which the node is surgically removed and examined by a pathologist).

While needle biopsies are somewhat easier to perform than node biopsies and can spare you some pain, node biopsies are the definitive means for diagnosing a node-based lymphoma. The structure of the entire lymph node, not just the cancerous cells within, is very important in determining the kind of lymphoma that may exist.

(Extranodal lymphomas are not diagnosed by node biopsy. The tissue or organ affected is biopsied instead.)

A node can be biopsied relatively easily, and with minimal recovery time, if it can be felt beneath the surface of the skin. At times, when the node is located deep beneath the skin, a more extensive, more risky surgery with a longer recovery time is necessary in order to retrieve tissue for a definitive diagnosis. This is more likely if a suspicious mass is noted only within the abdomen, as illustrated by this story:

When my mother told her gynecologist about a suspicious lump in her abdomen, he dismissed her concern. However, when she returned for her next annual exam and again mentioned this lump, he scheduled an exploratory abdominal surgery. They found a large mass of lymphoma, part of which was biopsied. She was told that the kind of non-Hodgkin's lymphoma she had could be cured in 85 percent of people and that she was not to worry. We were afraid that the doctor was not being honest with her, so I called the doctor myself and was told the same thing, in a tone that implied I was worrying too much. Following chemotherapy and radiation therapy, she has been cancer-free for over twenty years. I know now that she was probably diagnosed with an intermediate- or high-grade non-Hodgkin's lymphoma.

It is critical for the surgeon and the pathologist to coordinate the biopsy effort. The pathologist must be made aware of the suspected diagnosis so that slides and tissue samples can be prepared in special ways for the correct diagnosis of NHL or the elimination of NHL as a possibility.

Subtype and staging

Even after a biopsy is performed and a lymphoma is confirmed, there may be some question about which lymphoma exists, which subtype, and the stage of its progression, levels I through IV. As this information is critical to choosing an effective treatment, all lymphoma diagnoses should be confirmed by specialists called hematopathologists.

Some pathologists and oncologists refer biopsy samples to hematopathologists at the National Cancer Institute for the best possible diagnosis. This review may entail an additional delay in diagnosis. As most lymphomas are generally slow-growing tumors, the delay most likely will not affect the outcome.

Determining the correct stage may entail still more tests to determine if disease is found in the bone marrow, for example.

Final diagnosis may change your treatment plan

Your choice of an oncologist and your first appointment with her may occur before or after the final, highly specific information about your lymphoma is returned from the pathology lab. The oncologist in turn may request additional testing before recommending treatment.

The details of your final diagnosis can affect recommendations for treatment. For example, if you're ultimately diagnosed with a low-grade non-Hodgkin's lymphoma-a lymphoma that is the subject of intense research and evolving treatments-it would be wise to receive treatment or second opinions from a regional cancer center or university hospital with specialists in hematologic cancers. The oncologist you're already seeing may be affiliated with one of these groups and thus may have the necessary qualifications.

Once the diagnosis is secured, you will discuss with your doctor various options for treatment. The intermediate- and high-grade NHLs are usually treated immediately with several chemotherapy drugs and perhaps radiation therapy as well, depending on the location and extent of the tumor. Low-grade non-Hodgkin's lymphoma, on the other hand, may be simply watched for a number of years until one or more tumors begin to interfere with the function of other organs, and then treated with a single chemotherapy agent or a monoclonal antibody. Some cancer centers prefer treating the low-grade NHLs immediately with high-dose chemotherapy and stem cell rescue if many organs are involved.

The events from symptoms to final diagnosis, and those that will follow over the next months or years, are very likely to take an emotional toll. There are as many reactions to cancer as there are people, and you can't always be sure how you-or your loved ones-will react in new, frightening circumstances.

Although professional psychologists make fine distinctions among responses, reactions, and coping mechanisms, the emotional happenings described in the following sections are discussed not in clinical terms, but in terms your heart and soul will recognize.

All of the following reactions, and many others, are normal, albeit painful. You may think these feelings are useless or counterproductive, but like all defensive behaviors, they serve to protect your mind from harm until you can assimilate the experience and begin to build a frame of reference from the facts. You should not berate yourself if you're not feeling like the poster child for mental health week.

If weeks go by and you still feel that your reactions and responses are not serving you well, if you can't eat or sleep, if you can't stop crying, if you've lost a great deal of weight in a short time, or if you feel you are jeopardizing your source of income with suboptimal performance, see your doctor for advice. The newer sleeping pills and antidepressants are very effective in restoring sleep and appetite with minimal side effects, and objective scientific studies have shown that support groups and counseling make a profound difference in one's comfort and ability to deal with cancer.

The physical aspects of fear

If you had any hint that your symptoms might be cancer-related, you are probably already familiar with tremendous, overwhelming feelings of fear and their aftereffects. The physiology of fear is such that your body prepares you very specifically either for battle or retreat when you experience fear. We have evolved to note and react quickly to changing stimuli during a fearful encounter. This may explain why many people, when first diagnosed with cancer, want immediately to start a treatment-any treatment, just so they're doing something to fight back.

Unfortunately, these bodily preparations for action, such as increasing your pulse rate and redirecting blood flow from your limbs to your heart, brain, and other internal organs, are not the ideal biological events to prepare you for understanding and remembering your doctor's explanations. The moment that fear hits and adrenaline pumps, senses become heightened in preparation for life-saving action. However, that sensation that you can somehow see everything around you with remarkable clarity is not necessarily going to help you remember the doctor's description of two tests that need to be done, and a third test only if the first two are inconclusive, and where your doctor said she prefers these tests be done. Instead, you may remember exactly where you were sitting, the color of the doctor's office walls, and that stray hair of the doctor's that wouldn't stay put:

I remember the still, overheated southwestern summer weather outside, the soft sunlight in the cool examination room in the hematologist-oncologist's office, the chair where my husband was seated, my husband's face as he struggled to remain calm, and the words the doctor used in his moderate Filipino accent.

Numbness, mental slowness

Many cancer patients and their loved ones-intelligent and competent people-report not being able to remember anything of the doctor's explanation after hearing the word cancer. This is sometimes the case even when doctors themselves are diagnosed with cancer. Here's an NHL survivor's account of being numbed by her diagnosis:

There was this black hole in my ability to reason. I could not link anything to that moment or find a way to transition from it. Nor could I find anything in me to muster up outrage or panic or desperation. It was an otherworldly, emotionally null, intellectually nomadic period of a few minutes. Then, as I looked at my husband and back at my hands (as though they were a sign I still existed), all I could think was, "Well, it's still not my time to go." I have faced tough challenges before and found reserves to draw on. So now I may need to deplete them, but I won't have any of this take me from this great love across the room. And I knew I would need him to get through it. And he would need me to hang tough so his life didn't fall apart either.

Still others report becoming paralytic for days, unable to sleep, rise, eat, or work.

If you will be meeting the doctor in person to discuss test results and treatment choices, be prepared to have difficulty absorbing what is said. For example, you could be prepared to take notes, or take a friend or a tape recorder with you. Tell the doctor that you will be calling back with a list of questions after you have had time to absorb this information. If she expresses impatience or reluctance to help you, consider finding another doctor.

Detachment

Many people note that upon learning of their diagnosis they were completely objective, calm, and felt nothing at all, as if they were outside of their body observing this happening to someone else. This is called dissociation. Dissociation temporarily allows you to absorb information without emotional pain.

Childlike or nonsensical behavior

Some people note that they said and did things that made no sense, sometimes quite childlike things. This can be a seeking of comfort in happier times, technically called regression:

When my husband phoned to say his CT scan showed what was almost certainly lymphoma, I left my office immediately. Once at home I found that, although I was forty years old, all I wanted to do was reread my old girlhood Nancy Drew books.

Denial

Some people respond to the news of their diagnosis with the belief that there is an error in the laboratory test, or that their results have been confused with someone else's. (While laboratory errors are possible, they are not common.) This reaction, called denial, is a protective reaction to allow you to absorb an onslaught of information more slowly. Denial can be used successfully to help you forget about cancer between treatments, to return to your productive life. Denial may be a dangerous adaptive strategy, however, if you forget medical appointments or become convinced that your health will improve spontaneously with no treatment.

Anger

While many people develop focused feelings of anger some time after their diagnosis, others may feel a generalized anger at the time of diagnosis. They may lash out at the doctor who was the bearer of bad news about the cancer diagnosis or at loved ones for seemingly meaningless reasons. Sometimes anger is a form of projection, a displacement of painful feelings within the self outward onto others. As such, projection serves to reduce unbearable levels of pain. At other times, the angry person may simply feel overwhelmed by having to face all of the stresses and responsibilities of normal life, plus a cancer diagnosis. Yet others feel that being angry is more socially acceptable than feeling sad. Anger can be a useful emotion if targeted properly and harmlessly, but it can also signal the beginning of depression and can drive away the support of others that you will almost certainly need.

Sadness

Many people report that they cry or otherwise express great sadness, and that they feel better after doing so. Sadness is, of course, an entirely normal reaction to a cancer diagnosis. This change in your awareness of yourself connotes the possibility of great loss: loss of life, possible loss of motility, of career opportunities.

Guilt

If you're feeling guilty about possibly causing your or your loved one's cancer, you need to know that no sure cause of non-Hodgkin's lymphoma has yet been found for most cases: not stress, not environmental agents, not dietary choices.

Blame

Guilt may lead to blame. Like anger, blame can be a form of projection. If someone has been blaming himself for his own or another's cancer, the feelings may become unbearable and he may begin looking elsewhere for an explanation. Unfortunately, some people decide that the best solution is for another person to carry this blame. Those who have been coping with stress in this way for many years sometimes skip self-blame and go directly to blaming others. If someone in your life appears to be blaming you for cancer, you might try discussing this with him. If discussion doesn't improve the relationship, it might be best to remove this person from your immediate circle of activities temporarily and deal with him only when you feel most able.

Withdrawal

Others report that they or their loved ones initially seemed detached, withdrawn, or uncaring. Those who withdraw may do so for many reasons: as a habit formed during earlier stressful experiences, as a means to avoid shameful feelings about expressing emotion, in an attempt to keep emotional levels low so that others won't become upset, as an attempt to reduce exposure to painful ideas, and so on. At times it's almost impossible to know what really motivates you or others, even after serious introspection, or after others tell you what they feel. Your attempts to discuss this with the withdrawn person, or others' attempts to draw you out, may make matters temporarily worse.

Reactions of loved ones

There also seems to be some difference in reaction depending on whether it's you or your loved one who is facing a cancer diagnosis. Many cancer survivors report that, in their opinion, the experience was much harder on their loved ones than on themselves. Clearly this is a topic subject to personal interpretation, as the loving caretaker isn't undergoing treatment that can cause anything from mild discomfort to serious toxicity or even death. A cancer survivor who believes that his loved ones suffer more discomfort than he does, though, may be expressing a useful feeling of immortality, a belief of being in charge of his own fate that will serve him well during treatment.

It might be useful to keep in mind that loved ones face issues that are somewhat different from those faced by the cancer survivor. They may experience guilt that they themselves remain healthy, fear that they will be deprived of the person they love most, and helplessness in the face of cancer, a daunting enemy by anyone's standards.