The last almost six months has been a roller coaster beginning with my annual physical and progressing through numerous diagnostic steps to determine that I have prostate cancer, surgery/recovery, and now settling into selecting treatment options that will deter the cancer from returning. I have shared this journey with Diane, our daughters, and select friends who we thought might be able to help us cope with and navigate a way forward.
I am sharing now more publicly to reinforce the importance of September 2019 as the U.S.A. National Prostate Cancer Awareness Month. This month is important because too many men put themselves at risk by not doing annual check-ups, by not insisting on PSA tests (for anyone 55+ and even younger if there is family history), and by being complacent about prostate cancer treatment. The problem is that 1 in 9 men will have prostate cancer in their lifetime with many living their lives after diagnosis with either “wait to see” or minimally invasive treatment. A common folklore statement is, “most men die with prostate cancer but few die from it.” I’m here to debunk the complacency and urge men 55 and older, their partners, loved ones, and acquaintances to take prostate cancer seriously.
This is a long post and you may want to navigate to the topics that are of greater interest to you. The broad topics include; prevention through healthy living, anyone can get a surprise, determining how serious your case is, controlling the panic, treatment choices and combinations, radiation therapy and moving on, living with prostate cancer, and general concerns about medical policy and practice.
Prevention through healthy living
My lifestyle has included normal weight, eating healthy, exercising every day, and for the most part being a picture of health throughout my youth and adult years. I am 70+ and schedule my annual physical on a routine basis. I assumed I would hear nothing new during one of my check-ups; I had no symptoms of anything other than pesky arthritis to bring to my physician’s attention. To my surprise, I was informed that my PSA had risen to a level of concern for my primary physician; it was 6.6, which is just barely over the line from the normal range. After my physician checked my family history (my oldest brother was diagnosed with prostate cancer in his mid-70s), he decided that referral to an urologist was in order.
Anyone can get a surprise
The urologist conducted the routine examination and found nothing but, again, said that based on the slight rise in PSA and family history, I should do a biopsy. I won’t go into the details of what a prostate biopsy involves but rest assured, it isn’t the most fun I’d had. I was told that the urologist would get back to me on results in about a week. Instead, I was informed by telephone only four days after the biopsy that prostate cancer had been confirmed, that it was a particularly aggressive type that was likely to spread, and that the first step was to see where the prostate cancer might have already gone - thus a full-body bone scan. Immediately after that, abdomen/pelvis and chest scans were also ordered. I was referred to a surgeon for consultation on what options I might consider in dealing with my diagnosis. I was in shock and panicked and requested that my primary physician refer me to a general oncologist for a second opinion.
Determining how serious your case is and determining a course of treatment
Once I passed through the denial phase of “this can’t be happening to me,” I started to reach out to find resources – family, friends, web-based support groups, and research that would help me determine how bad things really were. I found that the prognosis for men with the type of cancer I had was not good. The biopsy included samples from my prostate rated at Gleason 8 and 9, coming close to the highest and most dangerous ratings. But my PSA had never been that high, I had no symptoms, and I couldn’t imagine being under threat of serious illness.
Ultimately, I determined that my case had the potential to be very serious, including the possibility of metastasis elsewhere in my body and/or recurrence within 3-5 years after any treatment. I knew that the threat was real and I desperately wanted to move forward with treatment and I wanted to protect my loved ones from the fallout of what was happening. I had to accept the reality of prostate cancer that would be part of my life from here on (although prostate cancer can be controlled, at present there is no cure for it) and I had to accept that considerations about treatment needed to be more invasive in order to have the peace of mind that I was doing all I could to address my cancer.
Controlling the panic
I sought a lot of information, journaling every day about what I had discovered, recording my weight and assessing my pain and emotional status as I went along. Gradually I was able to seek information that informed and helped me, reducing my inclination to overreact to everything I heard or read. The first weeks were extremely difficult and support from my wife and a couple of close friends were my lifeline. One particular night I was so distressed that the only thing that allowed me to sleep was my wife wrapping her arms around me in bed and holding me tight until I could fall asleep. My best friend in high school had been very public about his previous diagnosis with prostate cancer so, although we had not been in touch for many years, I reached out to him.
My friend provided basic information for me, recognizing that all cases are somewhat unique. But, most of all he reassured me that this early phase after diagnosis is the worst – the questions, fear, and sorrow were overwhelming. My friend said that this was natural and that I should work to educate myself and that I should trust that the medical staff who were treating me knew what they were doing and would work diligently to help me. In addition to this reassurance and the research I was doing, the physician to whom I was referred for a second opinion immediately recognized my panic and affirmed that my fear was only natural. He also offered additional objective information about my case that helped me see my diagnosis in context.
Treatment choices and combinations
Treatment choices for men diagnosed with prostate cancer vary widely. The individual variables considered include age at onset, the size of the cancer tumor and its location, the aggressiveness of the cancer itself (measured by Gleason score or Grade designation), and the potential for metastasis. At the low end of the spectrum oncologists may recommend a “wait and watch” approach to see if the prostate cancer grows or spreads (measured by changes in PSA). Mid-range recommendations include radiation and/or hormone therapy. The more serious cases result in a recommendation for more invasive radiation therapy and/or surgical removal of the prostate (radical prostatectomy). The most serious cases where the prostate cancer has spread beyond the prostate are likely to require a combination of the previous treatments plus chemotherapy to address the cancer throughout the body.
Ultimately, based on the risk of my particular type of prostate cancer, I couldn’t act fast enough to take the most decisive action possible – radical prostatectomy. Had I chosen radiation as an alternative, it would have been more difficult to determine the actual pathology of the cancer and therefore more difficult to settle on the best treatment. The surgery was done robotically which is a much less invasive procedure than open surgery. The surgery itself was four hours long and considered major surgery. The pain immediately after the surgery was tough but it was adequately managed during my two and a half day stay at the hospital. I went home with meds that helped me through the next couple of weeks but by week three, I was down to one Tylenol per day. By the fifth week after surgery, I was exercising regularly, returned to normal diet, and pretty much returned to my previous routine.
The lab pathology of my prostate revealed both a little bad news and more good news. The bad news was that the Gleason rating was overall rated at 8, which is high. In addition, the cancer had invaded the seminal vesicle, qualifying the cancer as Stage 3 (T3b classification), which was a very scary thing to here. On the positive side, the cancer had not penetrated to the margins of the prostate, there was no tumor, and cancer cells were found in only 5% of the prostate. These characteristics paint a picture of a potentially very dangerous form of cancer that we had detected very early, thus not allowing it to spread beyond the prostate and seminal vesicle. Beyond the pathology report from surgery, additional genetic testing caused my doctor to recommend follow-up radiation therapy to kill any remaining cancer cells that might remain in the local area of the prostate. This type of follow-up treatment does not usually begin until at least three months after surgery and so a period of waiting and anticipation ensued.
The radiation oncologist with whom I worked started our first appointment by saying, “You had a very good surgeon and our hope is that your cancer is cured. However, because of the adverse features of your pathology analysis, further treatment is recommended.” The encouragement and candor were both appreciated. My surgical oncologist gave me a Lupon injection (hormone therapy to suppress testosterone production) to prepare me for radiation therapy and I started treatment in December. Radiation therapy requires exact imaging of the prostate and pelvic area so that the radiation can be targeted in ways to avoid side effects that can be either temporary or long term.
I was so fortunate to have a radiation therapy center within five minutes of our home. Therefore, all I had to do was get up, observe a constant routine of preparation, and then run to my morning treatment thirty-eight times - weekends were off. The picture here is of "Robby" who was the robot who delivered the radiation therapy. Patients are in the room with the robot and technicians guide the process from a separate room where they look at scan images and match them to the doses. In the lower center of the robot is a carbon slab which extends out and this is where I would lie. The big part at the top is what emits the radiation. The entire robot rotates around the extended carbon slab so that the dose can be delivered with precision and consistency.
The hormone therapy and radiation therapy experience had a couple of side-effects that ended up being very manageable. The main issue was that my energy level would sag, especially as we got into the advanced stages of the treatment. The hormone therapy caused "hot flashes" like women experience in menopause so this was a great empathy exercise for me - annoying but tolerable. I finished treatment at the end of January 2020, almost ten months after starting this journey with prostate cancer. Follow-up appointments and PSA testing occurred in March and June to determine if radiation therapy and hormone therapy was successful. The results for both were very low and hopefully indicate that spread or long-term problems are unlikely.
I provide these details (and there are more) in order to call attention to a key issue related to prostate cancer – it is a very individualized disease and treatment must be done in very personalized and targeted ways. And, it's important to stay fully aware of everything involved - physical condition, emotional status, financial management, and relationships. Not to draw attention to myself, but I received the certificate to the left on my last day of radiation therapy. It means the world to me that those caring for me recognized the journey and congratulated me on the completion of this stage.
Living with prostate cancer
My journey with prostate cancer has been a real awakening. At my age, health problems emerge and I’m lucky that I’ve had so few problems in my life thus far. I’ve found so many helpful medical professionals who have been gracious, patient, and caring and I’ve enjoyed engaging with them and working to remain humane and loving toward them. The response has been amazing in almost all cases. I also now appreciate everything more – my wife, family, faith, music, and every little encounter that allows me to affirm another human being. Living with the knowledge that there is a disease inside me causes me to appreciate everything more. My hope after the next step in my treatment is to come back to pre-cancer living but I know that I will always be watching over my shoulder and hoping that doctors’ appointments and tests will confirm that the prostate cancer does not come back. I can’t control what will happen and I have accepted that. I will live to the fullest and appreciate every moment all the more!
We need a commitment to health, not sickness in the U.S.A.
An urgent realization I’ve come to in this process is that our sickness industry (forget calling what we have in the U.S.A. as “health”) is broken! Because I carry lots of privilege as a white male with advanced education, I have numerous resources and the basic literacy to negotiate for my health. This is not the case for everyone! Our insurance company has bungled multiple issues, has billed us for thousands of dollars in error, and has generally made our lives unpredictable and miserable while we’ve tried to manage the emotional impact of this disease.
In addition to the bungling and bureaucratization of the insurance industry, there are amazing public policies in place today that make no sense. One example is that the Veterans’ Administration will not treat veterans with prostate cancer over 70. This is based on the presumption that prostate cancer progresses slowly enough that it will not be life threatening to veterans who are diagnosed with it. Another example is related to PSA (Prostate Specific Antigen) testing; because the average age of onset of prostate cancer is 65, some physicians believe that PSA tests are only necessary from age 60 to 70. This is insane because men with family history may have prostate cancer far before age 60 and men over 70 (myself included) need to be diagnosed before symptoms are present, especially in cases of aggressive cancer. These examples simply scratch the surface of what’s not working and activism is the only thing that will bring about change.
The U.S.A. must begin to own the fact that it does not support health, even though there are numerous wonderful medical professionals who care deeply and want to help. Medical professionals struggle every day to provide the care that we need but they fight the insurance companies and pharmaceutical companies all the way. THIS MUST CHANGE! This is a travesty that needs to be addressed and the current political environment in the U.S.A. is standing in the way of change rather than helping citizens acquire the medical care that we each deserve as a basic human right.
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