Not one of us felt our prostate cancer was an insignificant disease. We found no solace in the saying that most men with prostate cancer die from something else. As best we could we had to balance all the talk of overtreatment and terrible side effects with the fears of the cancer.

Three of us were under sixty—so much for prostate cancer being just an old man’s disease! None of us were in the other high-risk categories of previous family history or race, yet we came to be diagnosed.
For the youngest of us, after his surgery, it was determined he did not have cancer. The conclusions about his screening results and provisional diagnosis were wrong.
For the eldest of us, he had surgery, resulting in side effects that drastically changed his quality of life. He made his treatment decision based on fear, not knowing whether he had a sheep or a wolf, or whether it was still in the barn or out on the highway.
Unlike colon cancer screening, prostate cancer screening is not standard practice in the USA. Yet more men die from prostate cancer than colon cancer.
Prostate cancer screening has given me a chance to overcome this disease; however, my efforts continue after surgery and radiation treatment. Had I understood the limitations of screening and the all-too-often wrong conclusions drawn from the results, my cancer would have been identified years earlier, giving me a better chance to overcome it.
Had I learned about the benefits of MRI scans for targeted biopsies before my biopsy, I might well have had a better outcome. Genomic testing was not approved in the USA nor covered by insurance at the time I needed it, yet I thankfully had it done.
Healthcare advertisements compel us to find the best of care, gold standard treatment. But what is the best of care, and how do we go about finding it? And what about all those men that do not receive it? Looking beyond all the advertising, I came to understand that cancer can be completely removed or destroyed; but that there is no guaranteed cure. Furthermore, I came to understand that cancer does not recur, or “come back”. If after treatment the same cancer is once again detected, even years later, that is because it was not all removed or killed by the treatment(s). Yes, it may be reduced to a non-detectable level, but it can still be there; lurking.
After my treatments, initial blood test results indicated its continued presence. Despite those results being below the USA's established guideline for recurrence, independently I pursed the most advanced imaging I could find. To receive that I traveled back to Europe. I am most glad that I did as remaining cancer was identified and localized.
This book is about my three-year journey and numerous medical consultations in the United States and Europe, navigating all the systemic misinformation, before making my treatment decisions.

Prologue

Andrew was a fit guy in his late fifties when his prostate biopsy was reported to show prostate cancer, just a few months ahead of my own diagnosis. He elected surgery for treatment. His prostate, sexual nerves, and multiple lymph nodes were removed. The final diagnosis was downgraded—Andrew did not have prostate cancer.
George, a longtime friend’s father-in-law, still travels internationally for his work, well into his seventies. These days he packs a suitcase full of men’s diapers as he is incontinent after having had surgery, a radical prostatectomy. Prior to his surgery, he knew few details of his diagnosis.
Joe proudly wore his veteran’s hat to radiotherapy. We only spoke a few times while we waited for our respective sessions, but each day we acknowledged our circumstances with at least a friendly greeting. His diagnosis came to light during an extensive physical check-up following a heart attack. A radical prostatectomy was scheduled, again with seemingly little evaluation of relative risks. During his surgery, the operating urologist found that the lymph nodes contained metastasized cancer, so the prostatectomy was abandoned. Joe was offered radiotherapy as a palliative treatment; his cancer was deemed incurable.
Peter is a businessman in England. He has prostate cancer. Rather than treating it straight away, he is in a medically supervised monitoring program (also known as active surveillance). When I met Peter, I recognized the Prostate Cancer UK charity awareness pin on his lapel, a black and white enamel male figure. He was not aware that details from an MRI and knowing the genomic risk profile of his tumor cells could be an important aspect in determining his risk level.
I, Keith, a fit weekend triathlete, included healthy checkups as part of my wellness plan. At age forty-seven, a seemingly routine blood test screening for prostate health resulted in a frightening cancer scare. A biopsy was done. Happily, it came back clear, showing no cancer, no concerns. At fifty-seven routine screening once again raised a scare, albeit less frightening. But that had a different outcome, as the biopsy tested positive for prostate cancer. My long-established urologist opened his diary and offered me an appointment for surgery, a radical prostatectomy, the following week. Confused, uncertain and afraid, I felt my life and lifestyle were on the line. Despite the cancer my instinct was to say “no,” which I did.

Table of Contents

Foreword
Five Guys
Introduction
One: The Screening Conundrum
Two: How Screenig Failed Me
Three: Oh Bollocks! Prostate Cancer
Four: Medical and Treatment Consultations in the United Kingdom
Five: Additional Consultations Back Home
Six: Prostatectomy and Outlook
Seven: Mira Vista
Eight: Radiotherapy and Outlook
Nine: Between a Rock and a Hard Place
The Bridge
Acknowledgements
Appendix A: What I Would Tell My Brother
Appendix B: About Continence
Appendix C: About Erectile Dysfunction (ED)
Appendix D: Representation of Male Pelvic Area
Author's Notes
About the Author
Endnotes

Sheep or Wolf

There are many confusing realities with prostate cancer.

A man facing unfavorable screening results may in fact not have cancer, as Andrew came to find out. At the opposite extreme a man’s cancer may have been undetected until it was too late, so only palliative care was warranted, as Joe faced. Or the cancer may not warrant treatment for a variety of reasons, such as apparent low risk, so medically supervised monitoring is the strategy, as for Peter. On the other hand, the cancer threat may warrant treatment, despite the reality of serious and permanent side effects. But as for George, who now wears man diapers for his incontinence, he did not know how serious his cancer threat was. He just knew he had prostate cancer and was afraid of it.
To simplify the process and to understand my cancer’s aggressiveness, I sought to answer the question—was my cancer a sheep or a wolf? As many prostate cancers are known to spread slowly, recognizing it as a sheep would mean that it was slower moving and not that aggressive. Depending on one’s age and overall health, with a “sheep” cancer, one may never experience symptoms, may never need treatment and may well die from something else.
To understand local cancer and metastasis better, I thought of my prostate gland as “the barn,” the area surrounding the gland as the “barnyard,” and the blood vessels outside of the barnyard and the lymphatic system as the “highway” to metastasis, incurable disease. Using that analogy made it easier for me to comprehend the diagnostic and treatment challenges I faced.
If the sheep were in the barn, time would be on my side. Time to research and consider various treatment methods, giving me a very good chance for a cure. If the sheep were already in the barnyard, I would have less time to consider treatment options, but still a good chance for a cure. If the sheep were out on the highway, there would be no cure.
If I had a wolf, no matter the location, I would need to make my decisions very quickly. If still in the barn, it seemed reasonable a cure was possible. If the wolf was in the barnyard, maybe a cure was possible. But if the wolf was out on the highway, as with a sheep, there would be no cure, and life expectancy might have been precariously short.
Although it may seem to be a simple concept and question as to if one has a sheep or a wolf cancer, it took me nearly a year to reach my conclusions and to make my decision for treatment.

Appendix A

What I would tell my brother.

Dispel the misinformation that prostate cancer is an old man’s disease; that screening has unmanageable risks; and that men should fear overtreatment and unwarranted side effects.

    Appreciate that more men would die from this disease if they did not die from something else, sooner (a dunk in a freeing mountain stream comes to mind).

    Take responsibility for the decisions, actions, and inactions regarding your prostate health. Follow through with regular screenings and be mindful that even with normal PSAs and DREs, cancer may be present. Consider graphing your PSA results and be attentive to even the slightest upward trend.

    Imaging (currently MRI or ultrasound) should be performed if any concern is identified. Give careful thought to the degree of sensitivity you want to rely upon—for imaging techniques are not created equally.

    If a biopsy is recommended, quell all fears and appreciate that they are a walk in the park compared to childbirth (or so they say). Request imaging to target the biopsy needle to the more concerning areas of the tumor to obtain a better analysis of the cancer threat. Consider a second reading of the biopsy pathology, because critical decisions are based on the grading.

    If cancer is diagnosed, obtain a genomic assay (or something similar) to help determine the risk of the tumor.

    Consult with an independent oncologist to determine whether the cancer is a sheep or a wolf, and when possible determine if it is localized to the barn, the barnyard, or out on the highway.

    Seek as many opinions as required to determine the best treatment plan, including consultations with professionals who will not be performing your treatment.

    Medical research papers, although technically daunting do provide clarity and consensus on the newest developments in screenings, investigative methods, and treatments. Well-conducted studies reflect independent thinking free of marketing influences.

    Always be chasing! Whether I was seeking information, appointments, medical records, biopsy slides, or a reply, I found it necessary to chase after them all. If not, valuable time is lost while you wait unnecessarily, adding to the anxieties one already faces.

    Maintain detailed notes of your various body functions and health functions. Once you begin treatments, it is difficult to recall exact details about your life functions such as sleep, energy, urination, and bowel movements. Don’t worry about your body temp or your blood pressure since nurses will record these ad nauseum.

    With the current turmoil in our health care system a solid medical savings plan is essential, adding to it wherever possible.

    Recognize that cancer is a lifelong journey, and that there is no assurance of early detection or a sure cure.

    Have a good sense of your lifestyle values and maintain physical and mental fitness.