My next appointment was with Dr. Singh, an oncologist at the Richard E. Winter Cancer Center. Her plan was to start me on chemotherapy for 18 weeks since the latest research shows that treatment leads to a prolonged life for patients with an advanced prostate cancer diagnosis. At first I was hesitant because I knew how harsh chemo can be on the body. I felt the hormone treatment was harsh enough, but the doctor was right. I had read about the research too and, with her persistence, went through 18 weeks of chemo treatment.
It was February 23, 2016. I was sitting in a doctor’s office in disbelief as he told me the results of my biopsy. He said I had an aggressive form of stage four prostate cancer with a prostate-specific antigen level, or PSA, of 286. The normal level is four or lower.
The prognosis the doctor gave me wasn't good. The moment was surreal. I couldn't even process the information and kept thinking, “This isn't happening right now; I'm only 46 years old with three daughters, in good shape, and this just isn't supposed to happen.” After driving home and telling my family, and a lot of tears later, I had no idea where to turn or what to do.
I told him it’s not fair and he said, ‘It’s not, but it’s the cards you were dealt and it’s up to you to play them.’
I met with my urologist, Dr. Lars Thompson of Canton-Potsdam Hospital, and was immediately put on hormone therapy. I was told cancer was showing not only in my prostate, but also in the lymph nodes in the pelvic area. Dr. Thompson explained to me that prostate cancer is an older man’s disease and the average age that advanced cancer is diagnosed is at 72 years old. He said it was uncommon for a guy my age to have it, but cancer has no boundaries. I told him it’s not fair and he said, “It’s not, but it’s the cards you were dealt and it’s up to you to play them.” I thought about what Dr. Thompson had said later and he was absolutely right. He had also told me how he has known several patients who had a poor prognosis and, several years later, they are still here. He made me feel like like there was hope. I knew this was not going to be an easy path, but I didn't want to look back and say I should have tried harder. It was time to roll up my sleeves and go to work.
I started reading everything I could find about prostate cancer. The best advice I can give anyone is to empower yourself with as much knowledge as you can about your disease. This is paramount and will help you in making choices and decisions about your treatment. Doctors take their best educated guess and do not always have all the answers. You have to be your own advocate. Nobody cares about you more than you.
At the end of the treatments more scans were done and then the results came in. The tumor on the prostate had shrunk down to one-third the size it was. Many of the nodes were showing normal size. Dr. Singh was ecstatic and suddenly I felt hope, and hope is a powerful thing.
My local doctors both agreed radiation was the next course of action to take since it is thought that once cancer escapes the prostate, it can be considered inoperable. I read the latest studies were showing that surgery for locally advanced disease can be beneficial, and even curable in some cases. The problem was this approach is that it’s new and only a few research hospitals were doing it. My doctors agreed I should get another opinion, so I went to Roswell Park in Buffalo. The surgeon I met with said I was inoperable and I left feeling disheartened. After some thought, I accepted the radiation offer. I knew I needed a localized form of treatment, and if radiation was all I could get then I was taking it.
I met with Dr. Kotlove, the radiologist at the Richard E. Winter Cancer Center, had my scans done, and was marked for the radiation therapy. But, a few days before I was supposed to go in for the start of the treatment I received a reply from an email I sent to Dr. Debra Kuban, a prominent cancer doctor out of MD Anderson in Houston Texas seeking advice on treatment options. I read a medical paper she wrote about prostate cancer with lymph node involvement, found her email on the MD Anderson website, and decided to take a chance and contact her. I wanted the information before the radiation started and never thought I would hear back from her. But, she set up a phone call and was nice enough to give me advice and answer questions.
Dr. Kuban said she wouldn't rule out surgery and that I should try different hospitals. She also said radiation could be an option, but she would like to see my current PSA level of 1.8 to decrease to .5 or lower since the lower the PSA is before treatment the better the treatment will work. I took her advice and told Dr. Kotlove I needed some time. He reluctantly agreed and said he doubted I could get my PSA any lower. I didn't know if he was right, but I wanted to try. I had to give this my best shot because I was only going to have one chance at it. I again felt hope and was thankful the doctor had contacted me. It was a long shot that paid off.
Then, it was time to do more homework.
I soon discovered the Mayo Clinic offered surgery to men with advanced prostate cancer if they fell under the right guidelines. I made the phone call and it was decided I might be a candidate for surgery. I met with Dr. Karnes and his team in November and he proceeded to order several scans and blood work. He said my PSA came in at .5 and he thought it would be to beneficial to have my prostate and the affected nodes removed. My determination paid off and again I felt hope and momentum. A month later, my prostate along with 42 lymph nodes were taken out during the surgery. Out of the nodes removed, only one tested positive for cancer. The doctor said what looked like cancer in the scans was actually scar tissue from where cancer was. He also said I responded really well to the chemo treatments that I had earlier. The bulky disease that once showed in my lymph nodes was gone. There was no way of knowing that had I forgone radiation treatment in the past.
On February 15, 2017 I had my first post-operative PSA check done. Dr. Lele, who is now my local oncologist at the Richard E. Winter Cancer Center, gave me the results as I waited nervously in his office. He stated my PSA was < 0.01, and that it was amazing. I asked him to repeat himself to make sure I was hearing correctly and he said with a smile, ‘It’s below undetectable’. A year ago, almost to the day, I was in a doctor’s office crying and in fear and now it was tears of joy.
It’s too early to tell what the future will hold with my diagnosis. However, it is certainly steps in the right direction. Being diagnosed with cancer is a life changing experience. I’ve learned to appreciate things in a different way. I’ve changed my diet and now eat a lot healthier than I did before I was diagnosed. I also started running and I can not begin to tell you what that does for your mind as much as your body. I exercised through most of the chemo and even light exercise during chemo treatments. I had a doctor tell me recently he thinks I channeled my mind to help heal my body. I think the mind plays a big part and determination is a huge factor. You can’t let statistics cloud your head. Be your own statistic.
I also feel it is very important to get second and third opinions. Research hospitals are on the cutting edge of treatment and can sometimes offer more options than local hospitals. If travel expenses are a problem, there are ways to make it happen. There are local foundations that exist just for this reason, along with wonderful people in St. Lawrence County who will help you figure it out. The people closest to me were, and continue to be very supportive. I have met some incredible people along the way that have impacted my life. As ugly as cancer can be it truly does bring out the beauty in people.
"Hope is that beautiful place between the way things were and the way things are yet to be."