Final Diagnosis – Non-Hodgkin’s Lymphoma

For years, I have felt that having atrial fibrillation was one of the most devastating afflictions one could experience. During an episode, the atria, or two upper chambers of the heart, quiver instead of beating effectively. I could never predict when my next attack would occur, or, when my heart would return to normal sinus rhythm. I would have never known that one day afib would save my life.

After an unusually stressful Friday evening, working as a unit secretary at a local hospital, I looked forward to a fun-filled weekend. However, as usual, my plans changed abruptly.

Early Saturday morning, I awoke to the familiar feeling of “squirrels fighting in my chest”. I grabbed my ever ready duffel bag and headed straight to the ER to be chemically cardioverted and anticoagulated.

This particular time, a newly hired female ER physician ordered a CT of my chest. This puzzled me, for in all the many times I had gone to the ER for an afib episode, no doctor had ever ordered this scan. Upon questioning her, she told me she wanted to rule out a pulmonary embolism. I hesitantly went to radiology. I now realize that having this scan performed was fate.

When I returned to my cubicle, the ER physician contacted the hospitalist on call.

I thought to myself, “Great – Now, I have an embolism as well as afib!” If only that was all it was. The hospitalist sheepishly entered my cubicle and softly closed the door.

I knew it was not going to be good news. She calmly said the scan revealed three pulmonary nodules as well as a thyroid nodule and I was to be scheduled for more extensive tests along with a fine needle aspiration. At this point, the “squirrels in my chest” felt more like fireworks, spiking my heart rate even higher.

I was immediately admitted as an inpatient. After twelve plus hours of being administered an IV calcium channel blocker, I finally converted to a normal sinus rhythm.

My first consulting doctor was a pulmonologist. He viewed my scans and was almost certain that my thyroid nodule was malignant and had metastasized to my lungs. The hospitalist came into my room and said if this was indeed the correct diagnosis, it would be easy to cure by taking radioactive iodine.

However, my relief did not last long. The next consult to see me was the endocrinologist. He emphatically told me the nodules in my lungs didn’t appear to be related to the thyroid nodule and he felt they were two separate issues. He ordered a fine needle aspiration of the thyroid nodule and the cytology proved to be benign.

A whole body PET scan was then ordered to determine if the lung nodules had any metabolic activity to rule out lung cancer. When the pulmonologist received the results, he seemed alarmed as he broke the news to me. He wasn’t even worried about the lung nodules now, but he was more concerned about the extensive abdominal lymphadenopathy which had a very high metabolic activity. The radiologist’s impression was: “Findings are worrisome for metastatic lymphadenopoathy versus lymphoma”.

A CT of the abdomen and pelvis confirmed his impression and a biopsy was needed of one of the lymph nodes for an accurate diagnosis.

I was finally discharged with my head spinning. I was admitted to the hospital with afib and was discharged with cancer. My labs were perfect; I didn’t feel sick; I had no pain. How could this be?

My daughter accompanied me to my evaluation at the local cancer clinic. I had always feared cancer due to my family history and when I would drive by the clinic, I purposely looked the other way due to a sense of fear and anxiety. Now, I am at the cancer clinic and I most probably do have cancer. There, I said it: “I HAVE CANCER!” I could barely utter the “C” word before.

It seemed like an eternity as we waited for my beeper to light up. I paced back and forth reading bulletin boards and literature regarding clinical trials and support groups. Everything I read made me feel more anxious and nauseous. After a long hour, the beeper finally flashed, and I was next.

The oncologist was warm and friendly, but very animated which made me even more anxious. He began reciting all the different types of cancers I could possibly have. This was more information than I needed to know at my first visit. He made an appointment for me to see a surgeon the following week.

My husband and I went to the consultation together. In contrast, the surgeon was calm, spoke slowly and explained things in a way that didn’t scare me. He explained I needed to have a full laparotomy so he could obtain a good biopsy and he would also perform an exploratory. Surprisingly, he didn’t schedule my surgery until three weeks later. He assured me that a cancer diagnosis was not certain and the nodules could possibly be benign. I left the office with some hope. However, my optimism was not long lived.

I had an unusual calmness the day of surgery. I figured whatever I had I couldn’t change and I would have to deal with the outcome with the grace of God. I had surgery on a Friday and I would not know the results of the pathology until Monday.

I had researched lymphoma extensively during those long three weeks and I knew all the right questions to ask when the surgeon came in the next morning. I asked him if the lymph nodes felt “rubbery” and when he replied they did, I knew in my heart I had lymphoma. He confirmed this even though he did not have the pathology results.

On Monday, the diagnosis was confirmed – Follicular Non-Hodgkin’s Lymphoma, Grade 1. He told me I had an indolent form of lymphoma which has no cure, but the good news was that it was highly treatable. I had mixed emotions about the “good news”.

I was discharged the following day and an appointment was made to discuss the pathology with the oncologist and to be given a treatment plan. I dreaded going back to the cancer clinic.

The new oncologist at my post-op visit was very different than my first physician. When he came into the exam room, I didn’t even know who he was, for he never introduced himself. This doctor was middle age and very soft spoken. When he spoke to me, his eyes were half closed. He told me my type of lymphoma has no cure. Period. If the surgeon had not already revealed this fact to me, and I hadn’t done my own research and knew my type was highly treatable, I would have fainted on the spot. He said because the lymphoma was indolent, I could have had it for ten years. I had no symptoms known as “B” symptoms – no fatigue, no night sweats, no low grade fever, no itching, no palpable lymph nodes. So, I had cancer growing inside of me for ten years and I never even knew it!

The doctor explained my treatment plan. I would be having eight weekly infusions of a monoclonal antibody, Rituximab. This is a targeted therapy that attacks B cells. It actually finds and destroys the cells where the cancer starts. After the first round of treatment, I would then have four weekly infusions every six months for maintenance for two years. A good thing about this treatment was that I would not lose my hair. That was a huge concern for me!

I began treatment the following week at the hospital, for I had to wear a heart monitor due to the afib. My friends joined me during the infusions to help the time pass quickly. After my eighth and last infusion, my friends wanted to go out and celebrate, but I said not until my PET scan confirmed that I was indeed in remission. I did not want to celebrate the unknown.

I dreaded the next PET scan and went through much “scanxiety” as I awaited the results. The news came at last: “Complete remission!” Let the celebration begin!

I know my remission will not last forever, as the good doctor had told me. However, at a later office visit, I finally pulled information from this man of few words – “Follicular NHL is not curable, but upon relapse, it can be treated for many years as in the case of diabetes or heart disease.” He went on to say that most people die from something other than lymphoma. This was music to my ears.

After much introspection, I have written my story to give hope to newly diagnosed patients of indolent lymphomas. There are many cutting edge treatments on the horizon and I feel that one day there will be a cure for most types of lymphomas.

Until then, I know that God has a plan for my life and He will walk along side of me throughout this disease.

I never did find out the name of the female ER physician who ordered the CT scan of my chest. She, as well as the afib rearing its head that Saturday morning, saved my life.