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.

Diagnosis

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.

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