Before I move on with this newsletter, I’d like to provide a quick health update.
Health update
It has been a roller coaster ride navigating the treatment regimens for Epstein-Barr virus reactivation, small intestinal bacterial overgrowth, and mold exposure with mycotoxin toxicity.
It will seem like I’m doing better, and then I’ll have a day where I hit rock bottom. Thankfully, the roller coaster ride has been on an upward trend, so it seems much more tolerable lately when I have a bad day. I have been taking prescribed antifungal and antiviral medications and many natural therapies, including a powerful mycotoxin binder.
I apologize that it has been three weeks since my last newsletter, and since I’m feeling better, hopefully, I’ll get back on my every two-week newsletter schedule. It creates serious writer’s block when your energy level is low, and your brain is fuzzy.
Prostate cancer community drama
I’d like to mention some drama that’s going on in the prostate cancer community. Johns Hopkins Medicine has long offered pathology second opinions. As they put it, “Getting a second opinion can sometimes lead to a complete change in diagnosis (such as cancerous to benign or vice versa) in non-cancerous growths, inflammatory disorders, infections, cancer, and other conditions.”
This program was run by a pathologist named Jonathan Epstein, M.D. It is very popular with men to help them determine if their prostate cancer was a low enough grade that it could be monitored with Active Surveillance or if needed to be treated. One Johns Hopkins study of men on Active Surveillance found that after 15 years, less than 1% of men developed metastatic disease.
According to Howard Wolinsky, who writes The Active Surveillor on Substack, about 12,000 men per year have opted to have preeminent uropathologist Jonathan I. Epstein, MD, director of surgical pathology at Hopkins, review their prostate cancer biopsy or surgical pathology slides. Mr. Wollinsky also says, “Hopkins has received approximately $45 million in fees for Dr. Epstein’s coveted opinions since 2013.”
According to Mr. Wollinsky, as supported by a Washington Post article, Dr. Epstein was put on administrative leave in May of this year. He “has been charged with creating a “culture of bullying” and intimidation as he allegedly leaned on his colleagues and residents to support pathology reports by his wife, Dr. Hillary Ross Epstein.”
There may be some men who read this newsletter who had their pathology slides reviewed by Dr. Epstein and want to know more about this situation. Please see Mr. Wollinsky’s excellent Substack post regarding this issue.
Let’s move on to the main reason for today’s newsletter: prostate cancer resources. In my research on prostate cancer, I’ve come across many excellent weblinks that serve as great sources of information for prostate cancer patients. Here they are:
Prostate cancer resources
National Comprehensive Cancer Network - a not-for-profit alliance of 33 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives.
NCCN Guidelines for Early-Stage Prostate Cancer
https://www.nccn.org/patients/guidelines/content/PDF/prostate-early-patient.pdf
NCCN Guidelines for Advanced Stage Prostate Cancer
https://www.nccn.org/patients/guidelines/content/PDF/prostate-advanced-patient.pdf
NCCN Cancer Centers
https://www.nccn.org/home/member-institutions/
Michigan Urological Surgery Improvement Collaborative (MUSIC) is committed to making Michigan #1 for urologic care, focusing on improving care for prostate, kidney stone surgery, and small renal mass patients in collaboration with the University of Michigan.
https://askmusic.med.umich.edu/prostate-cancer
ZERO Prostate Cancer is the leading national nonprofit with the mission to end prostate cancer and help all who are impacted.
Zero Prostate Cancer Patient Support Helpline: ZERO360
ZERO360 is a free, comprehensive service staffed by case managers who help patients and their families navigate insurance, find resources to help pay for treatment and living expenses, connect with emotional support services, and ensure access to care.
https://zerocancer.org/help-and-support/ZERO360
Zero Prostate Cancer Newly Diagnosed with Prostate Cancer
https://zerocancer.org/newly-diagnosed
Zero Prostate Cancer Resources for Caregivers & Loved Ones
https://zerocancer.org/help-and-support/resources-for/caregivers
Zero Prostate Cancer Financial Resources
https://zerocancer.org/help-and-support/financial-resources
Zero Prostate Cancer Black Men and Prostate Cancer
https://zerocancer.org/black-men
Zero Prostate Cancer Veterans
https://zerocancer.org/help-and-support/resources-for/veterans
Zero Prostate Cancer Support for the LGBTQIA+ Community with Prostate Cancer
https://zerocancer.org/help-and-support/resources-for/lgbtq
Malecare is America’s leading men’s cancer survivor support and advocacy national nonprofit organization
Malecare: Find a Clinical Trial
https://www.antidote.me/malecare-find-a-clinical-trial
Malecare Gay Man’s Guide to Prostate Cancer and Doctors
https://malecare.org/gay-prostate-cancer-and-doctors/
Prostate Cancer Foundation (PCF) funds the world’s most promising research on the biology and treatment of prostate cancer.
Patient Guide to Localized Prostate Cancer
https://www.pcf.org/guide/prostate-cancer-patient-guide/
Recurrent and Metastatic Prostate Cancer Guide
https://www.pcf.org/guide/prostate-cancer-patient-guide/
Additional Facts for Black Men and Their Families
https://www.pcf.org/guide/additional-facts-for-black-men-and-their-families/
Things Every Man Should Know About Prostate Cancer
https://www.pcf.org/guide/things-every-man-should-know/
Maintaining Health During Androgen Deprivation Therapy
https://www.pcf.org/guide/maintaining-health-during-androgen-deprivation-therapy/
Questions to Ask Your Doctor
https://www.pcf.org/guide/questions-to-ask-your-doctor/
Prostate Cancer Patient Guide (Spanish)
https://www.pcf.org/guide/spanish-guide/
National Cancer Institute (NCI) Designated Cancer Treatment Centers
https://www.pcf.org/patient-resources/patient-navigation/treatment-centers/
Prostate Cancer Clinical Trials
https://www.pcf.org/patient-resources/patient-navigation/prostate-cancer-clinical-trials/
Prostate Cancer Financial Resources
https://www.pcf.org/patient-resources/patient-navigation/financial-resources/
Prostate Cancer Research Institute (PCRI) – a not-for-profit organization that helps men research their treatment options. This is mainly a collection of YouTube-based informational videos.
Fans for the Cure (FFTC) is a nonprofit organization that seeks to promote men’s health by advocating for the early detection of prostate cancer and best practices in treating the disease.
Cancer Patient Lab is a very innovative patient-led community that was founded with a mission to help advanced cancer patients and their caregivers. Their team provides you with the tools and resources to make informed treatment decisions. They believe that nobody should face cancer alone, so they’ve created a platform where patients can connect with each other and with experts in the field. They help patients and caregivers avoid cancer journey pitfalls and adopt best practices by gathering and sharing data, especially experiences, across their community.
PeterMac – Peter MacCallum Cancer Centre – Victoria, Australia
A world-leading (prostate) cancer research, education, and treatment center.
Memorial Sloan Kettering Cancer Center PSA Doubling Time Calculator
PROMISE - an online registry of prostate cancer patients participating in a research study to learn how genetic differences can affect patient outcomes. All prostate cancer patients can join at no charge. For registering, you receive a free Color’s Hereditary Cancer test. This saliva test looks for the most common germline hereditary cancers.
The genes that will be tested for are APC, ATM, BAP1, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4, CDKN2A, CHEK2, EPCAM, GREM1, MITF, MLH1, MSH2, MSH6, MUTYH, PALB2, PMS2, POLD1, POLE, PTEN, RAD51C, RAD51D, SMAD4, STK11, TP53.
A licensed genetic counselor provided by PROMISE will discuss the results and any implications for the patient and his family. The free appointment with the genetic counselor can be made online at the PROMISE registry.
Adaptive Bipolar Androgen Therapy for Prostate Cancer by Russ Hollyer
An online e-book written by a super-smart retired electrical engineer living with advanced prostate cancer. His book provides actionable and innovative ways to treat advanced prostate cancer based on his experience, research, and advice from treating physicians. One of his main goals is to avoid becoming resistant to hormonal ablation, also known as castrate-resistant prostate cancer (CRPC).
This book is for the intellectual type as it details his treatment history, peer-reviewed research on his treatment decisions, and how he works innovatively with physicians who treat advanced prostate cancer. Fascinating! To me, anyway:-)
Prostate Specific Membrane Antigen (PSMA) Radioligand Therapy (RLT) in Germany
These links are for men interested in PSMA radioligand therapy but are not eligible for it in the United States (U.S.). If you aren’t castrate-resistant, you’re refusing or can’t tolerate androgen deprivation therapy; you’re likely not eligible for treatment with PSMA RLT in the U.S. And that’s why some Americans go to Germany for treatment.
https://prrtinfo.org/for-patients
https://www.curanosticum.de/en/services/radio-ligand-therapy-psma/
https://airomedical.com/blogs/articles/lutetium-177-in-germany
Until next time, stay well.
Much love,
Keith
Keep on healing. You have this!!! Love You, Lynda and Lori