Turn of the Century Tumor

It was 1999, I was a single mom of nine year old twin boys and always on the go with a full-time job, elementary school drop-offs, subway to work and then a tag team with the babysitter after a day at the office. Evenings were filled with martial arts classes and weekends consisted of baseball, soccer, and basketball depending on the season. Life was full and life was good.

Dealing with a bad fall

Early in the year, I took a fall that badly bruised both of my knees. I didn’t go to a doctor, I dealt with the pain, which gradually subsided. Soon after, the pain came back and over the course of the next few months worsened. It felt like really bad bone bruises that I thought might have come back from the fall, although there was no swelling or discoloration. I could barely touch my knees without flinching. I went to my internist who prescribed ibuprofen and told me to come back if the pain persisted. I started taking ibuprofen daily without much relief and after a few months, the pain got so intense I was having trouble walking up and down the subway stairs. My doctor again sent me home telling me I am not getting any younger, it’s probably arthritis and to continue taking ibuprofen.

Supporting my mother with her lung cancer

Around that time, my mother’s lung cancer resurfaced after being in remission from her original diagnosis in 1995. She and my father had retired to Florida years before, I lived in New York and had no one to leave my twins with to stay by her side (my sons were in 4th grade preparing for NY Statewide exams which were necessary for them to ace to get into a decent middle school) so the three of us took advantage of long weekends and school breaks to stay with her. Meanwhile, I completely ignored my pain, continuously popping ibuprofen. I did not want to use time off of work for my doctor, I was saving all my time to travel back and forth to Florida to be with my mother. She transitioned in January 2000.

After the funeral, life went back to a normal routine (on the outside, as on the inside I was mourning my mom, who was also my closest friend). Life was filled with work and my sons’ extracurricular activities. Life was also filled with constant knee pain that was not getting any better. I now had the time and the headspace to focus on my own health and doctor appointments. Once again, I was told to take ibuprofen.

Seeking a second opinion for my knee

Finally, by mid-year I had enough, the pain was not letting up. I knew something was very wrong. By then my internist had retired and another doctor took over his practice and I decided to see what the new doctor thought. As I was filling him in, a visiting doctor that was there for that day only overheard me and took notice. She saw I had the beginnings of clubbed fingers and suggested to the new internist that this could be an indication of lung disease or rheumatoid arthritis and I should get a chest x-ray to rule those out. I did not expect the x-ray to give me any answers on my knee pain and didn’t think it was lung cancer even though I had a family history of the disease, because none were diagnosed in their early forties, my age at the time.

What the x-ray found...

A few days later I got a call from my doctor that the x-ray showed at least one large tumor in the right middle lobe of my lung and scheduled me for a needle biopsy with a pulmonologist at the local hospital. The biopsy came back positive for lung cancer, and off I went to my thoracic surgeon (after getting three opinions from three different hospitals). Then came the PET scan, the bone scan, and brain MRI.

After all the results came in, my surgeon felt, as far as he could tell before opening me up, that I was operable Stage 3. He also gave me an interesting piece of information – once he removed my middle lobe containing a large tumor and some concerning escaped nodes, my knee pain would immediately disappear. I jokingly asked him if it was because it would be overshadowed by the surgery pain, he laughed and said no. He explained that the pain was from a not so common condition that some get with lung cancer called Hypertrophic Pulmonary Osteoarthropathy, basically a hormone from lung tumor(s) that secrete into long bones and can also cause digital clubbing. True to my doctor’s word, after my lobe was removed, the knee pain was gone.

The what-ifs of my delayed diagnosis

I wondered what my story would have been had my doctor, knowing my family history of lung cancer, sent me for testing right away. Would I have been Stage 1?

I also wondered what my story would have been if the visiting doctor did not visit on the day of my appointment and overhear my complaints. Would I have been Stage 4? It was 2000, no targeted therapies, not many options. Would I be alive and writing this now?

I no longer wonder, I just accept the fact that I am here today and am very grateful that I can say that.

Editor’s Note: It is with profound sadness that we announce the passing of Alisa Brenes on November 9, 2024. Alisa’s advocacy and writing have made a lasting impact, and her contributions will continue to inspire many. She will be deeply missed.