My diagnosis last February wasn’t unexpected. Both my father and brother had prostate cancer, which meant I had a greater-than-average likelihood of also developing the disease.
For over 15 years, I had been seeing my urologist for a digital rectal exam and a prostate-specific antigen (PSA) test. Each year I expected bad news. It was a medical sword of Damocles.
Over the years, my hope grew that I would be lucky and stay cancer-free. But after my annual visit to my urologist in late 2019, my PSA score was higher than in the previous year. That triggered tests (including an ominous one called a punch needle biopsy). Diagnosis: aggressive prostate cancer.
In some ways, I was relieved to have the waiting over. The hanging sword of “will I get cancer?” was gone, to be replaced by “will I beat cancer?”
Last March, I met with a radiation oncologist. According to the American Cancer Society, prostate cancer is the second most common form of cancer among men, after skin cancer, and thus, treatments and their short- and long-term outcomes are well known.
“Watchful waiting” wasn’t an option because my cancer was too aggressive. I had already made up my mind that I didn’t want surgery because of possible side effects such as anal leakage.
What the oncologist recommended, and what I ultimately decided upon, was a combination approach. Step one was to reduce my testosterone. Step two, six weeks later, would be a daily series of 25 small-dose targeted radiation treatments. Step three, a few weeks following that, would be surgery to embed tiny radioactive seeds in my prostate. This approach, according to studies, would give me the best chance for survival and, I hoped, remission.
Since testosterone can stimulate prostate cancer cells, research has shown that reducing its levels can potentially arrest the growth of certain cancer cells and weaken them. Before radiation treatments started, the goal was to medically eliminate my testosterone. It’s basically a chemical castration, but no one used that term.
My first treatment was in late March. It was this drug regimen that caused the side effects that were comparable to those my daughter-in-law was dealing with during her pregnancy. They began shortly after I started my drug treatment.
For men, testosterone is key to a number of things such as sexuality, muscle mass, energy level, fat distribution and body hair. Rather quickly I noticed that my sex drive was gone, like it had been switched off. My wife and I had always had a very active sex life but that disappeared. Ability and interest became problems.
Add to that, insomnia, hot flashes and hair loss (luckily just on my chest — my head seems safe so far). I realized this was going to be an interesting journey.
Step one of my treatment already was a bit of a downer. We hadn’t even gotten to the radiation yet.
The next part of my treatment was mini-radiation treatments (five days a week, for five weeks). Each session was less than five minutes long and consisted of a focused beam targeting my prostate and surrounding tissue.
Over time, this regime resulted in additional side effects including diarrhea, fatigue and what I called brain fog. Luckily, my treatments were during the summer, so I didn’t have to deal with my work in the public school system in Montgomery County, Md.
I also was fortunate that the pandemic restrictions did not pose a major challenge. My health-care team took every safety precaution while staying focused on my care. As a visual person, I had to overcome the disconnect of not being able to see my health-care providers’ faces. But I adjusted with the help of medical staff members who worked hard to make me feel physically and emotionally comfortable.
At home, I started a slate of projects to keep my mind and body active. Repairing a decayed front porch. Building a cobblestone patio. Adding a pergola. Replacing a stockade fence. All interspersed with a daily nap or sometimes two. Added to that were the emergency bathroom breaks caused by my unhappy gastrointestinal tract.
Everything was harder and took longer than it should. Quick multitasking was replaced by focus and plodding. I had to think about each stage and then push myself to do it. It was like trying to write with your nondominant hand. You can do it, but you really have to concentrate.
There was a six-week break after radiation wrapped up. Before my scheduled surgery for the seed implantation, I was just starting to feel better.
In mid-August, as an outpatient procedure, the doctor implanted 95 radioactive seeds in my prostate. Each seed is like a small section of mechanical pencil lead. The goal is to disperse the seeds throughout the prostate to surround and finish off any surviving cancer cells with the radiation.
After the surgery, I was given a letter to carry certifying that I was radioactive. I could use it if I set off any of the radiation detectors at our borders, in case my wife and I made a trip to Quebec. I was also warned to not let my grandchildren or pets sit on my lap. My 2-year-old grandson was too busy to notice the snub. But my 18-year-old cat did not understand why my lap (her nap spot) was verboten.
In addition to the renewed fatigue and bowel issues, I now had a traumatized prostate. Because of the surgery, my prostate became swollen, and urination became an issue. I was given a medication to make urination easier, which it did. Too easy.
I used to joke about having a bladder of iron. But now, I was like the character in the movie “Paper Chase,” who was described as having a bladder the size of a pea. When I needed to go, I had to go.
This was about the same time our 2-year-old grandson was working on potty training. For a while, he had far better bladder control than I did.
In December, I met with an oncologist who told me I seemed to be cancer free. But I’ll have at least another year and a half on the hormone suppression therapy. According to the research, that’s the best way to avoid reoccurrence.
When that therapy ends, I hope I will be able to enjoy sex again. But the end of the other treatments has meant that my lap is safe for both grandchildren and cats.
At each stage of treatment, I’ve tried to maintain a positive attitude. I’ve attempted to mitigate or counteract symptoms as much as possible. And I’ve worked to keep a sense of humor. It’s helped greatly to have a loving and supportive wife as well as encouragement from friends and family. I think every journey is easier with help.
History of prostate cancer screening protocols
In 1994, the Food and Drug Administration approved the prostate-specific antigen (PSA) test to detect prostate cancer in asymptomatic men. This led to an increase in screening among Medicare beneficiaries, and physicians said they routinely performed PSA tests on men 80 and older.
But in 2012, the U.S. Preventive Services Task Force, a federal advisory committee, said all men did not need to be routinely screened by PSA tests, citing the harms of aggressive treatments of early-stage cancer.
Six years later, the committee revised its recommendation. It said that for some men ages 55 to 69 screening can provide some benefit, but that many men also could be harmed by it. The decision to screen should be an individual one made after talking with a physician, the panel said in 2018. It also continued its recommendation that men 70 and older should not be screened.
Between 2005 and 2018, the latest year for which data is available, the percentage of men 55 and 69 who have had a PSA test in the previous year has declined. Some have blamed this drop for the stabilization in the death rate for prostate cancer, after years of decline, and the rise in the incidence of advanced disease. Others have cautioned against making this causal link.
The American Cancer Society has age-defined recommendations for when to have a discussion about screening; age 50 for men at average risk, and lower for those with high risk because of a father or brother diagnosed with prostate cancer at less than 65 years of age. Should men choose to be screened based on a discussion with their physician, the organization recommends a PSA test and perhaps a digital rectal exam.
The concern over screening for prostate cancer relates to its slow-growing nature; but without a test, men may not know they have cancer. And even if the test indicates prostate cancer, it may not indicate the potential severity. There also is the possibility of a false positive.
A cancer diagnosis could lead to aggressive treatment. Many of the treatments for prostate cancer carry the possibility of serious side effects that can greatly affect the quality of life of a patient. These include sexual dysfunction, incontinence, bladder and bowel problems, and fatigue, among others.
For many of these reasons, more men with low-risk prostate cancer are choosing “watchful waiting” or “active surveillance” of their tumors instead of immediate treatment. A study showed that in 2015, 72 percent of men 65 and younger diagnosed with low-risk prostate cancer rejected immediate surgery or radiation in favor of monitoring, with similar data for men 65 and older.
The PSA test remains the most-often used screening tool and is covered by Medicare, but a relatively new blood test called 4Kscore looks at a combination of four prostate protein biomarkers — along with a patient’s history — to determine a statistical likelihood that the patient has an aggressive form of prostate cancer (with a Gleason score of greater than or equal to 7). The test, some researchers say, helps reduce unnecessary biopsies.
My urologist prescribed a 4Kscore test, which came back with a 48 percent likelihood of an aggressive prostate tumor. It was that test that then led to a biopsy and ultimate cancer diagnosis.
The test is not yet FDA approved, but it is covered by at least some insurance companies.
