Prostate Cancer Resources -030
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 do my best to get a newsletter out every three weeks.
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.
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 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.
Memorial Sloan Kettering Cancer Center PSA Doubling Time (PSADT) Calculator
It refers to the time it takes for a patient's prostate-specific antigen (PSA) level to double in value. Doctors typically use at least three PSA measurements, separated by several months, to calculate a reliable PSADT. A shorter PSADT is associated with a higher risk of metastasis and cancer-specific mortality. Many clinical trials for prostate cancer consider a Prostate-Specific Antigen (PSA) doubling time (PSADT) of less than 10 months to be an indicator that further action or intervention may be warranted.
Memorial Sloan Kettering Cancer Center Prostate Cancer Nomograms
Prostate cancer nomograms are predictive tools that help patients and their doctors assess the characteristics of their cancer, evaluate risk, and estimate potential treatment outcomes. These tools use patient-specific data to provide insights into the likely course of the disease.
Nomogram results should always be interpreted in consultation with a physician and considered within the context of an individual’s treatment plan. The predictions are based on data from high-volume surgical practices at a leading academic medical center. The pre-radical prostatectomy and post-radical prostatectomy nomograms rely on dynamic statistical models (with the exception of calculations for survival probability) derived from more than 10,000 prostate cancer cases treated at MSK.
Results from different nomograms cannot be directly compared. Nomograms should not be used to evaluate or compare the effectiveness of different treatment approaches. Patients and caregivers using these tools should discuss the result with the patient’s physician.
For patients diagnosed with prostate cancer who have not yet begun treatment. This nomogram predicts the extent of the cancer and long-term results following radical prostatectomy (surgery to remove the prostate gland and surrounding lymph nodes).
Can be used by patients after their surgical treatment for prostate cancer. This nomogram predicts the probability of remaining cancer recurrence-free at two, five, seven, and ten years following surgery.
This nomogram predicts whether a recurrence of prostate cancer after radical prostatectomy can be treated successfully with salvage radiation therapy (external-beam radiation given after the prostate cancer returns). It calculates the probability that the cancer will be controlled and PSA level undetectable six years after salvage therapy. You can use this nomogram for applicable results if your post-radical prostatectomy serum PSA level was at first undetectable (less than 0.05 ng/mL) and then rose steadily, indicating a recurrence.
Risk of dying of prostate cancer in men with a rising PSA after radical prostatectomy
This nomogram can be used by patients to estimate the risk of dying of prostate cancer if their cancer recurs, signaled by a rising PSA, after radical prostatectomy. The nomogram predicts the likelihood, in a man initially treated with surgery, that he will die of prostate cancer five, ten, and 15 years from the time his PSA begins to rise.
The information used to build this prediction tool was based on patients treated from 1987 to 2011. Since then, treatment for men with advanced prostate cancer has improved, so the risk of dying of the disease in the future may be less than estimated by this tool.
Risk of high-grade cancer on prostate biopsy
Designed to calculate the likelihood of having high-grade prostate cancer in men who have been considered eligible for prostate biopsy by a urologist. If you have not been examined by a urologist, the results produced by this calculator will be a considerable overestimation of your risk for prostate cancer (that is, it will give a risk that is too high). This tool is not applicable for men who have already been diagnosed with prostate cancer.
UCSF developed the Cancer of the Prostate Risk Assessment nomogram that predicts an individual's likelihood of metastasis, cancer-specific mortality, and overall mortality.
The Cambridge Prognostic Group (CPG) system
A risk classification nomogram for non-metastatic newly diagnosed prostate cancer. Your risk group tells you how likely it is that the cancer will grow quickly or spread.
LuPSMA (Pluvicto) Prognostic Model
Researchers from University of California, Los Angeles and other five institutions across Europe, Australia and the United States of America developed this nomogram, designed to estimate the risk of progression-free and overall survival for patients treated with 177Lu‑PSMA radionuclide treatment (LuPSMA). May assist physicians when considering treating patients with LuPSMA radionuclide treatment but cannot substitute clinical judgment and therefore should not dictate clinical decision.
The LuPSMA nomogram can calculate individual patient risk based on clinical and imaging characteristics before treatment initiation. It requires knowing the current hemoglobin level, tumor SUVmean, and the number of metastatic lesions on the most recent PSMA PET CT.
For predicting the risk of lymph node involvement in prostate cancer patients. Used to identify the candidates for extended pelvic lymph node dissection.
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:-)
PeterMac – Peter MacCallum Cancer Centre – Victoria, Australia
A world-leading (prostate) cancer research, education, and treatment center.
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