On Christmas Eve 2015 I was diagnosed with stage 4 non-Hodgkin’s immunoblastic high grade lymphoma, a couple of weeks later my doctor suggested that I should start 6 months of chemotherapy treatment as soon as possible. Being a newly diagnosed cancer patient is extremely stressful and it is difficult to even think straight let alone to make the decisions that are required. Looking back at it now I realize that I was given a small amount of time, very little information and very few options. My options were fairly simple, do six months of chemotherapy or lose my life.
My wife and I researched as much as we could in the days after my diagnosis but even knowing exactly what cancer I had and what chemo drugs were being prescribed by the doctor it is a very time consuming and daunting task to research the disease as well as the options that are available to treat it.
Each case of cancer is different and as many options as possible should be looked at before choosing treatment. I have had a few people tell me that if they were ever diagnosed with cancer that they would never choose to be treated with chemo because of all of the horror stories that they have heard. It is not a decision to be taken lightly, you should never blindly follow your doctors orders, it is your right as a patient to get a second or even a third opinion. I sought out and received multiple opinions and they all concurred with the original diagnosis and they all suggested a chemotherapy based treatment.
Looking back at it now I realize that there was a flaw in my approach. I trusted my doctor explicitly, I do believe that he made the best decisions for me based on the options that were available. But his decisions were based not on the options available as far as medicine is concerned but the options that the insurance company made available based on my health insurance plan and what that plan covered. The obvious flaw is that all of the doctors that I sought opinions from were from the same insurance company. Although the doctors and especially the nurses took very good care of me during treatment I have since lost faith in the health insurance system in the U.S., unfortunately I don’t believe that they truly have the patients best care in mind. I think the most important thing to the health care companies is the bottom line, for them it basically boils down to profit, loss and liability. The insurance companies don’t allow the doctors to make decisions based purely on what is best for the patient but instead the decisions are based on what the insurance plan allows, the doctors have to stay within the guidelines established by the insurance company. By seeking out and receiving multiple opinions from doctors within the same health insurance company the opinions that I received were biased and were based not on my health condition but on the limitations and structure established by my insurance company.
My doctor has suggested that I need to do another 6 months of chemo. If the cancer returns again then I would repeat the same exact treatment and if it doesn’t work the second time then a third round of the exact same chemo is recommended. If the same treatment fails 2 or 3 times then at that point the insurance company would possibly allow me to receive the next step in treatment which would be chemotherapy combined with bone marrow or stem cell replacement therapy. If this fails then I would possibly qualify for a brand new T-Cell treatment called CAR-T. The way the system is currently set up I would have to go through many years of failed treatments in order to qualify for one that offers the best chance at a cure.
I am currently living in Warsaw Poland and the cancer that I was treated for in 2016 has returned. I have decided to receive care here in Warsaw, care that I will be paying for myself. I still have health insurance in the U.S., insurance that would cover most of the costs for my treatment yet I have decided to pay 100% of the costs to receive my care in a country where I am not insured. I could remain in the U.S. and redo a treatment that only brought me temporary remission or I could spend my retirement, spend every penny that my wife and I have in order to skip the unnecessary chemo treatments and jump straight to the bone marrow transplant or the T-Cell treatment.
Unlike my health insurance company I am more concerned about my health than I am the bottom line.
I am willing to spend every penny that I have if I am able to regain my health. In my previous two blog entries numbered 12 and 13, (DOUBLE CLICK HERE TO VISIT) OZELTON.com, you can read about my experience looking for a doctor in Warsaw.
I am confident that I have made the right decision for me and that the care that I will be receiving here in Warsaw is the best possible option.
Musings by OZ 