Karen G., NH

At the age of 64, my husband was diagnosed with stage IV non-small cell lung cancer. This diagnosis came as a complete surprise to me, his wife of 42 years. We were in the final years of work, planning to retire in just one year. Bob worked in construction most of his life, where he was exposed to a variety of toxins that could well have caused lung cancer. He had some asbestos exposure, and he smoked as a young man for about six years. He and I also lived in homes that had high radon. Which I believe is the second leading cause of lung Cancer. 

Bob's lung cancer was discovered by "accident." He was in for a different reason; he had an X-ray, and there it was!

Although the diagnosis shook us both, what happened afterward must be changed. Between January 4, when Bob was diagnosed, and April 2, 2021, when he died, he was admitted to the hospital three times for pain management and ended up at the ER twice. We saw many doctors, technicians and nurses telling us different things depending on their specialty or expertise. I suspect this is quite normal, but it was overwhelming as I struggled to track who we saw, what they said and their recommendations. Medications changed almost daily due to the impact the meds had on Bob and his ability to tolerate them. On top of that, I was trying to continue working, although I finally applied for and was approved for FMLA.  

Unfortunately, the cancer was caught too late, and even though at first we felt hopeful, it was not long before we realized it had spread too far. It was overtaking Bob's body, causing severe pain that could only be managed with high doses of pain medications.  

I firmly believe Bob's cancer could have been treated with success if it had been caught earlier.  
Lung cancer screening should be recommended for people like Bob. I find it very frustrating that the requirements for the screening all center around tobacco exposure. He had very little tobacco exposure, and therefore, even if he had asked to be screened, it probably would have been denied.

The two most important things that I would like to see changed would be, first, to recommend anyone over 50 to have a lung cancer screening, much like what we already do for breast, prostate, and colon cancer. Second, the medical world has to get better at supporting patients and their families who are going through these types of situations. We were being seen and treated by one of the most well-known cancer treatment facilities in the United States, and from our experience, I would give them a 4 out of 10. I felt completely unsupported and lost as I navigated a foreign territory using a language I was very unfamiliar with. This should not be allowed to happen to anyone. Some things happened to us during every hospital stay that are unacceptable. 

This experience has changed my life forever. The man I loved and cherished is no longer here with me to share in my retirement years. The last months that I had with him were awful; he was not himself, and we never really got a chance to say goodbye. The drugs took over his mind and his body and left very little of the man I knew. It was hard, sad and very difficult to forget.