The “C” word. No one can imagine 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 eight or nine 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 for mine. Now, my blood was tested for PSA and the result was bad, very bad. It was 259 (four is the top end of what is considered acceptable). To see more of the picture, my doctor wanted 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 have to access a sterile body part by going in through a sewer (the rectum). 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 sharp 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. The Gleason grading system is used to evaluate the samples taken during a biopsy. A Gleason score is 1 through 10, where 1 to 5 is clear, and 6 to 10 indicates positive results for cancer. The percentage of each sample that is found to be cancerous also indicates whether the disease has spread beyond the prostate gland.
Of the 12 needle biopsy locations, nine were found to contain high percentages of cancer. Of those nine, eight had a Gleason score of 8, and the last one was scored at 7. These scores indicated the cancer had already spread into my body, beyond the prostate. My doctor said that the next step was to get computerized tomography (CT) images and bone scans that, together, would show us where the cancer had spread. The scans were performed in the hospital as an out-patient.
For the CT scan, I laid on a conveyor that moved me through a tunnel like machine. It rotated around me and took X-rays from multiple positions. A computer then combined the images into cross-section images of my body. The bone scan was a nuclear imaging procedure in which tiny radioactive tracers were injected into a vein. Then, I laid on a conveyor similar to the CT scan and the machine could view the tracers and obtain images. Various parts of my body absorb the tracers in differing degrees. Areas in my organs and skeleton with higher absorption would show up in the images as bright spots indicating abnormalities caused by the cancer.
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 urologist 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. He said 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 urologist 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 the Winship Cancer Institute at Emory University. I did just that. At Emory I found an incredible oncologist who was instrumental in the CHAARTED study that showed excellent results of early hormone therapy combined with chemotherapy 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 chemo drugs, such as Zytiga (abiraterone acetate) which is administered orally, and he explained chemotherapy using docetaxel infusions. Some people prefer chemo infusions because it is six treatments and you are done. Other people would rather take pills daily for the rest of their lives. No study had been done that showed any real difference in the outcome of chemotherapy infusions versus the new chemo drugs.
At first, I was going to go the pill route. I was terrified of chemotherapy because of my preconceived notions and the horror stories from people I had known who went through chemo infusions and suffered horrendous side effects before dying painful deaths.
But there was a major snag in my getting approval for the new pill form of Zytiga (abiraterone acetate). 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 this new drug. 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 oncologist reassured me again that the results of chemotherapy infusions are as positive as those from the new drug Zytiga. Medicare would pay for the chemotherapy infusions. Because of these two considerations, I chose to take the chemotherapy infusions. Believe me, nothing about taking chemotherapy infusions came close to the fear and angst of anticipating it.
I have now completed all six required cycles of chemotherapy infusions with Taxotere (docetaxel). Each cycle took three weeks. The biggest side effect for me was the infamous cancer fatigue, especially during the first week after each infusion. It would take about all the energy I had to walk from my chair to my bed for a nap. My ability to concentrate was affected, too. Sometimes I had to think very hard about words or especially about sequential steps required to do something. This is a phenomenon called “brain fog.” Cramps in my ankles and legs were also problems at times.
My oncologist prescribed Compazine (prochlorperazine) to prevent nausea during the cycles and it worked extremely well for me. I also took Prednisone, a corticosteroid to suppress my immune system and reduce the negative side effects of the Taxotere (docetaxel). The Prednisone affected my mood and appetite, but I had no swelling or weight gain.
The routine at each treatment was: a lab test for blood markers, doctor appointment, then chemo infusion. If my blood looked good, the doctor approved the chemo infusion, then the Taxotere (docetaxel) was prepared and administered. The positive results were immediate. After the first infusion my PSA dropped from 259 to 20, then to 5 after the next infusion, then to 2, then 1.7, 0.83, and finally down to 0.55. Similarly, my testosterone level 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.
One thing I did not have at all was neuropathy in my feet or hands. My wife read about studies done in Canada, the United Kingdom, and France that indicate icing of the fingers and toes during chemotherapy infusions prevents any changes to fingernails and toenails as well as preventing 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 was not pleasant, but it was certainly tolerable and gave me a big pay-off. To me, it was like a kid playing in the snow with no mittens. Each of my chemotherapy infusion sessions lasted about one and a half to two hours. Once in a while, when my hands or feet got too cold, I took them out of the ice for a short break. At the end of all six treatments, I had no changes in my fingernails or toenails and no neuropathy.
Another side effect of the chemotherapy infusions was hair loss. I had heavy, patchy hair loss on my head that started about 13 days after my first infusion. 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 was 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. I’ve also lost about three fourths of my body hair.
My hormone therapy started with Firmagon (degarelix) because it does not cause flairs or spikes in the bone lesions. Some other hormones do. After a few weeks the oncologist changed my hormone to Lupron (leuprolide). These hormones are effectively medical castration. The prostate cancer feeds on testosterone and by significantly reducing the amount of testosterone, they deprive the cancer of food. The hormones have caused me to have some hot flashes, similar to what women experience in menopause. Sometimes I have night sweats.
As for sexual function, I am 66 years old and have suffered from erectile dysfunction for six or seven years from a history of high blood pressure, type II diabetes and prostate issues, including prostatitis. One of the results of hormone therapy has been the loss of sexual function and even a reduction in the size of my genitals. I rarely have any kind of erection, although I still have the same physical feelings associated with sexual arousal.
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.
Overall, my cancer treatments and the associated side effects have been far less of an ordeal that the initial fear of treatment.
The biggest positive about chemotherapy infusion treatment is that you do it and it’s over forever. For me, I have now completed the whole course of chemotherapy and will never have to do it again. Compare this 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 gave 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.
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 also have to mention some of the person-to-person connections I have been provided with through Us TOO that have helped greatly with good information and support.
My advice to anyone facing chemotherapy is to first go to the nearest national cancer institute (NCI). There are 70 NCI-designated cancer centers located in 36 states and the District of Columbia. These centers are the backbone of research, clinical trials for the newest treatments, and clinical care for cancer patients. Here you can then find an oncologist who specializes in your particular cancer. Ask questions, listen to suggestions, and make a shared decision with your oncologist and caregiver about what treatment you will get.
Each person’s cancer is unique and your responses to drugs will also be unique. So, ask your oncology pharmacy specialist about any drugs to be used and their most common side effects.
The Grim Reaper follows us all. Most of our lives we ignore the inevitable fact that everyone will die. But, when you receive the diagnosis of a non-curable, chronic, and ultimately terminal disease, the Grim Reaper comes up closer behind you. 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 ever imagined.
Mark Slaughter © August 8, 2018