Posted: Aug 03, 2018
The C word. No one can imagine beforehand the horror of being told you have cancer.
My problems began with urinary troubles: middle of the night urges, frequency, and the inability to go, start, or finish a urine stream. My primary care physician recommended a urologist.
My urologist was awesome and earned my confidence and trust with his approach. He explained he was trying to see a picture rather like a jigsaw puzzle, but in order to see the picture clearly, he needed more pieces of the puzzle. He convinced me to let him do a digital rectal exam (DRE).
The result was not good. On a 0-10 scale, 0-5 would indicate no problems and 5-10 would range from concern to panic. He said mine was about a 7 or 8. Very smooth everywhere, no evil nodules or lumps, but way too hard. Unlike the softer part of your thumb near the palm of your hand (like it should be), it felt like the harder area of your thumb where the bone is located. It was definitely a reason for concern.
Next, he talked me into a PSA test. I was one of the men who, about seven or eight years ago, read the controversial studies about PSA tests and unreliable results, and I took them to heart. Many organizations were saying PSA was overrated and shouldn’t even be used. So, I had stopped letting doctors test mine. My PSA was tested and came back very bad. It was 259. To see more of the picture, my doctor needed to do a biopsy. He respectfully listened to all of my logical arguments.
No number of needle probes will show you enough of the prostate. Too many and you can damage a fragile little organ. Besides, you would access a sterile body part by going in through a sewer. He held his ground and said he really needed this important piece of the puzzle. My wife and I thought about it overnight and agreed to let him do the biopsy.
My biopsy procedure was a piece of cake. I was given an antibiotic before the procedure. An ultrasound device accurately guided the doctor, and he was able to get 12 samples: 6 from each side of the prostate. Of the 12, I was really only hurt by one of them. Each felt like someone quickly poked me with a pencil. I heard the device click. I required no pain medication and passed a little blood during urination for a few days afterwards.
Then the results came. Of the 12 needle biopsy locations, nine were found to contain high-grade cancer. Of those nine, eight had a Gleason score of 8, and the last one was scored at 7. The range for cancer is 6 to 10, so we knew this was a bad score. It meant the cancer had spread beyond the prostate gland. My doctor said that the next step was to get CT and bone scans that, together, would show us where the cancer had spread in my body. My next stop was the hospital for the scans. The procedures were simple and easy enough. The results were another story.
February 8, 2018 is a day emblazoned in my memory, a day I will never forget, the day time stopped. That was the day I was told I have the big C word: I have cancer.
My doctor was tactful but did not mince words. The CT scan showed cancer in my lymph nodes, in my groin, and up my back on both sides of my spine. The bone scan showed lesions in four places on my pelvis and six places on my ribs. The tests all showed that I have advanced Stage IV metastatic prostate cancer. There is no cure. But we can manage it with hormone treatments and chemotherapy. With no treatment, I might only have a couple of years to live. With treatments, perhaps three to five years.
Upon hearing this news, my first thought was: I am dead. I had been standing next to my wife Denise, who was seated at her desk as we listened on the speakerphone. I collapsed into a seated position on the floor and reached out to catch Denise as she fell out of her chair. We crumbled to the floor together, sobbing and wailing with wrenching heaves of our chests. Squeezing each other as though life had ended that very moment. We embraced. We cried. We cried. We cried. Time stopped.
We laid together in a heap on the floor for a long time. By the time we climbed to our feet, we could hardly breathe. My face hurt from all the tears. Our eyes were swollen, our faces red below our eyes and otherwise colorless as though life itself had drained from our faces. It was like our lives were over.
My doctor referred us to an oncologist. We couldn’t stand him. He was rude and dismissive as he explained the chemo treatment plan and the poor prognosis for the remainder of my life. It is an understatement to say that he lacked a good bedside manner. Several friends immediately recommended we get a second opinion.
A friend of mine, and my former primary care physician when we lived in Atlanta, told me to forget that guy and get myself to another center. I did just that. I did just that and found an incredible doctor who was instrumental in the CHAARTED study that showed excellent results of early chemotherapy treatment combined with hormone therapy for the treatment of advanced metastatic prostate cancer.
My first appointment with this doctor was an education in prostate cancer. He explained the course of the disease, different methods of treatments, and answered each and every question I had. He described the treatment options as the tools in his toolbox. Whenever one might fail to produce results, he would reach for another one. He explained new drugs, such as hormone therapy, and he explained chemotherapy. Some people prefer chemo because it is six treatments and you are done. Other people would rather take pills for the rest of their lives. No study showed any real difference in the outcome of chemo versus hormone therapy. At first, I was going to go the hormone therapy route. I was terrified of chemo because of my preconceived notions and the horror stories from people I had known who went on chemo and suffered horrendous side effects before dying painful deaths.
But there was a major snag in my getting approval for hormone therapy. Because I am on Medicare and have the Part D drug coverage, I was not eligible for any financial aid from the pharmaceutical companies or from any other charitable organizations for hormone therapy.
Consequently, it was going to cost me in the neighborhood of $5,000 per month for the rest of my life. This was a huge blow to overcome mentally and financially. There was no way I could afford that.
My doctor reassured me again that the results of chemo are as positive as those from hormone therapy. Medicare would pay for the chemo. Because of these two considerations, I chose to take the chemo. Believe me, nothing about taking chemo comes close to the fear and angst of anticipating it.
I am currently undergoing chemo. I am through the fourth of six cycles of Taxotere (docetaxel). The biggest side effect for me has been the infamous cancer fatigue, especially during the first week after chemo. It takes about all the energy I have to walk from my chair to my bed to take a nap.
My doctors gave me Compazine (prochlorperazine), which prevents nausea and has worked extremely well for me. I also take Lupron (leuprolide), which has caused some hot flashes, mostly in the late afternoon and evening. Sometimes
I have night sweats. Cramps of my ankles are a bothersome little issue several times a week.
One thing I have not had at all is neuropathy. My wife read about studies done in Canada, the United Kingdom, and France that indicate icing of the fingers and toes during chemo infusions prevents any changes to fingernails and toenails as well as neuropathy. I asked my oncologist and he said although there are no definitive studies in the United States that show results, he didn’t object to my doing it. My wife has faithfully kept my hands and feet iced during treatments. It’s not pleasant, but it’s certainly tolerable and offers a big pay-off. To me, it’s like a kid playing in the snow with no mittens.
Each of my sessions lasts about 1.5-2 hours. Once in a while, when it feels too cold, I take my hands or feet out of the ice for a short break. Overall, my treatments have been far less of an ordeal that the initial fear of treatment.
Another side effect: hair loss. I have had heavy, patchy hair loss on my head that started about 13 days after my first chemo treatment. The afternoon when large patches of hair began falling out into my hands in the shower, I decided to take action. The next morning, slowly, deliberately, I dressed, collected my wallet and keys, walked to the garage, got in the car, drove to the nearest barber and got a buzz cut. I didn’t think about it. I just did it. And it was one of the best decisions I have made. It is far easier to manage quarter inch long hair than patches of messy hair. I would say to any guy, wait and see if your hair begins to fall out, then just accept the fact and manage it.
As for sexual function, I am 66 years old and have suffered from erectile dysfunction for six or seven years. Hormone therapy is medical castration. The result is loss of sexual function. I rarely have any kind of erection, and even the size of my genitals has shrunken somewhat.
But, with a loving partner, these things have not been so hard to accept. I still have the good feelings two people share in intimacy. I would rather be alive than fully-functional, sexually. I do admit my history has made this easier to accept than it might be for some younger men. The key here is perspective. Some choices in life are just hard. You have to decide what matters the most.
The biggest positive about chemo is that you do it and it’s over forever. For me, six cycles of three weeks, then never again. This compared to a lifetime of multiple pills on a daily basis, worrying all the while about how long they might be effective.
On the down side, you have to get your head around walking into a room feeling good and letting them inject you with strong chemicals that will make you feel bad. It’s rather bizarre. I live about 200 miles from my cancer treatment center, so the car trip and hotel stay give me way too much time to let bad thoughts get in the way before each treatment. Again, it’s all about controlling your thoughts and attitude. I know it sounds trite, but holding onto a positive attitude really matters.
The routine at each treatment is: a lab test for blood markers, doctor appointment, and chemo infusion. If my blood looks good, the doctor approves the chemo, then the chemo is prepared and infused. I know it’s working because the blood tests show positive results. My PSA has dropped from 259 to 20, 5, 2, and 1.7 over the first 4 treatments. Similarly, my testosterone has dropped from around 500 to less than 20, which the doctors consider insignificant. They tell me my testosterone level is that of a prepubescent boy, which is good because loss of testosterone starves the cancer.
My oncologist has not even discussed AR-V7 biomarkers with me because, so far, my cancer has been responsive to chemo. We have had some general discussions about castrate-resistant prostate cancer and that there are other options for continued hormone treatments after the Lupron (leuprolide), should it become ineffective.
I have a wonderful support group. First, my loving wife of 46 years is a registered nurse and the best advocate anyone could ever ask for. Second, I live in an active adult community of residents over 55. So many of my neighbors have been supportive and shared their own experiences with cancer. Third, I have a strong faith. My church friends have been amazing with calls, cards, food, gifts, and time for visits. It has been humbling to see how many dear friends I have and how supportive they are in my time of need. I think this is one of the biggest keys in getting through cancer.
I have to mention some of the person-to-person connections I have been provided with through Us TOO have helped greatly in terms of information and support.
My advice to anyone facing chemotherapy is to first go to the nearest national cancer center, get a top-rated oncologist who specializes in your particular cancer, ask questions, listen to suggestions, and make a shared decision with your oncologist and caregiver. Ask your team of doctors and pharmacologists for all information about drugs and their most common side effects.
Each person’s cancer is unique and your responses to drugs will also be unique.
The Grim Reaper follows us all. Most of our lives we ignore the inevitable fact that everyone will die. With a chronic, terminal diagnosis, the Grim Reaper comes up closer behind us. The key to survival is to never look back. Focus forward. Look to the light of day. Focus on the here and now. Enjoy life.
In a strange way, having advanced Stage IV metastatic prostate cancer is a gift. It has changed the focus of my life in positive ways. Because now, more than ever before, I live in the present. And life is more intense, fuller, and more complete than I could have imagined.
Dr. Snuffy Myers talks further about CT scans and cancer risk.
Posted: Oct 17, 2018
Dr. Snuffy Myers talks further about CT scans and cancer risk.
Posted: Oct 11, 2018