Second in series from my book, the prologue, titled "Five Guys". (The stories of the men are real, each known to me. To protect their privacy certain details have been excluded and their real names have been replaced with pseudonyms.)
George travels internationally for his work; well into his seventies. These days he packs a suitcase full of men’s diapers for urinary incontinence. Prior to his surgery he understood few details of his diagnosis.
As I came to learn in my efforts as a patient detective and patient scientist, incontinence is a risk with any treatment modality; much depends on the location of the primary tumor and its invasiveness. To further understand the details of my diagnosis, I traveled from Texas to London for a second MRI, a multiparametric MRI (hard to find in US in 2015). I also sought out genomic testing to further understand the aggressiveness of my cancer; my score was low intermediate risk. Today men have several methods to help them understand the threat of their cancer. www.genomichealth.com/en-US/oncotype_iq_products/oncotype_dx/oncotype_dx_prostate_cancer...
Sharing new series from my book, the prologue, titled "Five Guys". The stories of the men are real, each known to me. To protect their privacy certain details have been excluded and their real names have been replaced with pseudonyms.
Andrew was a fit guy in his late fifties when his prostate biopsy was reported to show cancer, 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.
With all that is written about over treatment, Andrew's outcome frightened me, especially because his biopsy Gleason score was 3+3, as my own initial biopsy score had been. A re-read of my biopsy at the UK's most prominent cancer center upgraded the result to 3+4, as did a further opinion from a gold standard laboratory in the US. It is important to understand that biopsy results are to a degree subjective, based on a pathologist's interpretation of what they see on the slide, as well as the fact that the biopsies taken may not be representative of the disease in the entire prostate gland. I find this discussion one of the better ones about the interpretation of Gleason 6 Prostate Cancer: sperlingprostatecenter.com/gleason-6-prostate-cancer-progress/...
By: Dan Sperling, MD While PSA screening has undeniably lowered the death rate from prostate cancer, there is another side to the coin. Screening has led to the overdetection of Gleason 6 (3+3) prostate cancers that are so slow growing as to be considered indolent. Without the tools to determine wit...
Fourth and final in series from “What I Would Tell My Brother”, Appendix A in my book:
Maintain detailed notes of your various body 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 whenever 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. sheeporwolfcancer.com...
Third in series from “What I Would Tell My Brother”, Appendix A in my book:
Seek as many opinions as necessary 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.
footnote: seeking many medical opinions can be overwhelming, and sometimes requires out-of-pocket expenses, but I find this necessary with prostate cancer given that comprehensive multidisciplinary reviews are not practiced in the USA. ...
Second in series from “What I Would Tell My Brother”, Appendix A in my book:
Imaging (currently MRI or ultrasound) should be performed if any concern is identified. Give careful thought to the degree of sensitivity you want to reply upon—for imaging techniques are not created equally.
If a biopsy is recommended, quell all fears and appreciate 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. ...