Ed Evon Feels ‘Better Than Ever’ With New Cancer Treatment
Ed Evon – a husband, father and cancer patient – is being treated for stage-four metastatic prostate cancer. Showing no symptoms at all, he learned he had cancer in 2017 during a routine yearly physical. In this article, Ed shares his heartfelt and uplifting story about his experience living with cancer, his new perspective on life and how every day is precious.
Tell us about your cancer diagnosis.
I was first diagnosed with an aggressive form of prostate cancer in 2017 following a routine annual physical. I then began the long and arduous treatment process.
Dr. Castillos is actually the second oncologist I’ve had. I spent 17 months with the first oncologist, who is part of a large medical group that tied his hands as to how he could treat patients. Unfortunately, it came down to which treatment could generate the most revenue for the practice despite whatever side effects I complained about.
Can you describe the early days of your treatment?
Right after the diagnosis, a prostatectomy was performed. Soon after, lab work showed biochemical failure. As the radiation oncologist was performing scans ahead of the radiation, he noticed a small renal cell carcinoma on my left kidney. A partial left nephrectomy had to be done before the radiation. This is when I received the first injection of Lupron, a prescription hormone medicine used to treat advanced prostate cancer. This drug caused unbearable side effects, but the first oncologist offered no alternative treatments.
Then I had eight weeks of salvage radiation. After all that radiation and not even a full year later, the cancer showed signs of recurrence. As my prostate cancer lab work showed an upward trend and a PET CT scan showed some spreading to my left obturator muscle, I was classified as Stage IV Metastatic.
The treatments had to resume, and I submitted to the injection since I was given no other options. I was to receive a Lupron shot every three months until I died. No. Just no.
How did you come to be a patient at Personalized Hematology-Oncology?
I did my research to find a better oncologist with more control over their medical license. I felt there had to be a better chance for a patient-centered treatment plan with a doctor who is not beholden to a large practice or hospital. And boy, was I right! I found Dr. Castillos before the next shot was to happen. My choice to see Dr. Castillos was a pivotal point of my journey.
When treatment started with the first oncologist, I was unaware of other alternatives. I was continually telling the doctor that I did not want the standard treatment (Lupron). At one appointment, my wife even asked if there was anything else. The first doctor just typed away on his keyboard, ignoring our questions and concerns while sidestepping ANY discussion of a different treatment.
In my research, I learned that the Lupron treatment brings in more revenue for the medical group because it requires a medical provider to do the injection. Therefore, it is billed under the medical side of my health insurance instead of the pharmaceutical. So, one shot was billed to my insurance at a cost of approximately $25,000, which left quite a bit on the table for me to pay. This was to happen every three months, which was the prescription from the large group.
Dr. Castillos understood my frustration and switched me to Orgovyx, a pill that is billed under my pharmaceutical plan. The side effects are barely noticeable, and my co-pay with this drug is $0.
What has been your biggest challenge throughout your medical journey?
My biggest challenge was not only accepting the fact that I have an incurable cancer but focusing on the detrimental, permanent side effects of the surgeries and radiation. My life was turned upside down, as one might imagine. But I got a handle on my emotions and my life. Fortunately, the people I love and need are all still in my life—a blessing I will always count.
Also, another barrier was fighting for the treatment I wanted. It is not as easy as one would think to take control of your healthcare to find a doctor that embraces a patient-centered treatment plan. A doctor who listens instead of typing on a keyboard through the entire appointment. Thankfully, I found Dr. Castillos.
What factors have helped you through the challenges?
My family, my friends and the love I have for them have been the greatest gifts.
Another factor is Dr. Castillos himself. He gave me the push to do my part outside of our appointments. That is when I started eating better, going to the gym and just enjoying life. He told me to go enjoy life while he takes care of the cancer. And with that, my wife and I have been so relaxed about anything that might come our way.
We truly believe Dr. C has it covered. I do not feel like a dark cloud is permanently looming overhead like I did with the first doctor. Another factor is how Dr. C has a firm grasp on all the new treatments coming out of FDA approval and has let me know that this battle is far from over. What a relief!
Have you had help from family, friends or support groups?
Support groups are not for me. A group setting is not conducive to expressing and dealing with what is going on. Too many people talking and nothing getting accomplished.
My wife and two children have always shown me unconditional support and intense love, even when I was not the best version of myself. Extra activities like my bowling league and friends were also a great outlet to deal with what was going on with my condition.
Where are you now in your treatment journey?
I am currently on treatment and doing so much better. There really are no side effects, and I have remained in remission for almost a full year at this point. My wife and I have a European river cruise planned for early next year. Cancer will not stop me.
Is there anything you would have done differently through your diagnosis and treatments?
I wish I had found Dr. Castillos at the start. After the experience I had with the first oncologist, it is incredible to see a doctor on the other side of the spectrum. Not only listening to me but understanding what I am feeling, what I want.
The fact that Dr. C is not glued to a keyboard is pivotal for me. He always has a member of his office in our appointments taking notes, giving him complete focus on me and my wife. He is so engaged throughout our entire appointment.
What advice or words of wisdom would you give to other patients who are facing a similar experience?
Each one of us MUST be our own advocate for our healthcare. Not all doctors are completely honest, and some even have ulterior motives, like profitability over patient care.
All of us have to learn to ask all the questions. You cannot be afraid to question a treatment. Do research on your own, ask more questions and find out what is best for you. We know ourselves better than anyone else; we must utilize that and express our concerns.
Is there anything else you wish to share with others?
You have to do your part outside of the doctor’s appointments. Take care of yourself—mind and body. We prepare our own healthy meals. I joined a gym and exercise four to five times a week. I laugh more and walk outside to feel the sunshine and breathe the fresh air. I feel better than ever. I actually feel 20 years younger at this point.
