[The author makes some rather strong statements in his story. He also cites a variety of statistics that may or may not be accurate. No doubt they reflect his personal opinions, to which he is entitled. However, be sure to use your judgment to evaluate the validity of his claims for your personal situation.]
A prostate cancer survival guide by a patient and victim.
Beware, the ugly truth. What doctors are not telling you about prostate cancer testing and treatment; lies, exaggerations, deceptions, exclusions, undisclosed harm and sometimes death.
The man that invented the PSA test, Dr. Richard Ablin now calls it: The Great Prostate Mistake, Hoax and A Profit Driven Public Health Disaster [1].
Any man over 50 or with a high PSA, anyone concerned about cancer in general, dangers from clinical trials, harm and deaths from prostate cancer testing and treatment or medical mistakes, quality prescriptions at a huge discount, exploitation and elder abuse, HIPAA loopholes and privacy issues should read this document.
Updated May14, 2020
In my opinion:
Follow the money!
Per multiple experts: Blind biopsies and treatments for prostate cancer are often worse than the disease.
Read the sad uncensored truth about prostate cancer outdated over testing and treatments, dangers, exploitation for profit by some uninformed or profit motivated doctors. Prostate cancer dirty secrets, lies, exaggerations, deceptions, privacy issues, multiple undisclosed side effects and elder abuse. Healthcare is often about making money off others misfortune and is full of conflicts-of-interest. Many in healthcare don't want to do the right thing. With careers and billions of dollars at stake it is unlikely people in the medical field will disclose the entire truth.
Disclaimer: I have no affiliation with any group or organizations. I am not a doctor. I do not prevent, treat, diagnose, cure or advise on medical matters. The information in this document is for educational purposes only. If you need treatment or medical advice, consult a competent and trustworthy medical doctor. I am not responsible for this documents misuse, misquoting, additions and deletions, personal attacks, modifications or plagiarism. This document contains blunt content, adult subjects and may be offensive to some people. Discretion is advised.
Anyone may copy, distribute or post part or all of this document without bias or modifications.
I created this document after I was extensively abused, financially exploited, lied to, provided substandard care and had my privacy and confidentiality violated.
Facts per reliable sources:
1. Multiple studies have verified more harm and deaths caused by prostate cancer testing and treatment than from prostate cancer itself [1,9,10,11,22,23,25,27].
2. Extensively documented unnecessary testing and treatment of prostate cancer for profit or poor judgment by some doctors in the USA [1,5,9,10,25,27].
3. Medical mistakes are the third cause of deaths in the USA. More then suicide, firearms and motor vehicle accidents combined [13]. Yearly 4.8 million hospital patients suffer from needless harm and 440,000 hospital patients die because of errors or hospital-acquired infections. https://news.northwestern.edu/stories/2016/11/how-to-prevent-440000-yearly-deaths-due-to-medical-errors/
4. About 1 man in 7 will be diagnosed with prostate cancer in his life. 233,000 new cases per year in the USA.
5. 10% to 20% of nurses abuse drugs because of easy access [4]. Other study estimates are as high as 24%
6. 1 million dangerous and outdated prostate blind biopsies are performed per year in the USA [5,11, 22,23].
7. Up to 6.9% hospitalization within 30 days from a prostate blind biopsy complication [11].
8. About 1.3 to 3.5 deaths per 1,000 from prostate blind biopsies [5].
9. 0.5% died and 20.4% had one or more complications within 30 days of a radical prostatectomy [15]. 20% of men will ejaculate urine. Prostatectomy related regret increases over time, 47% at 5 years after surgery [29].
10. A study of early-stage prostate cancer found no difference in surviving at 10 years whether men had surgery, radiation or monitoring (no treatment) [12].
11. Low-risk Gleason 3+3=6 bogus (fake) cancer lacks the hallmarks of cancer yet it is often aggressively over treated [1,2,9]. Only about 15% of high-grade prostate cancers with significant amounts of Gleason 4 or 5 require detection and treatment, only these types of prostate cancers are potentially deadly. Testing and treatment should often exclude men over 70 years old or with a short life expectancy.
12. Prostate cancer patients are at an increased risk for chronic fatigue, anxiety, insomnia, depression, suicide and heart attacks.
13. Depression in prostate cancer patients is about 27% and 22% at 5 years, for advanced prostate cancer patient's depression is even higher [6]. Men are more likely to take antidepressants after treatment. Suicides occurred up to 4 times more often in prostate cancer patients. Men are often not screened for depression after treatment.
14. 75% of physicians in the world would refuse chemotherapy if they had cancer.
15. Breast cancer receives much more research funding, publicity than prostate cancer despite the similar number of victims.
16. Per one published study: Men who experience long term severe symptoms after prostate cancer treatment was sizeable. 12 years after 87% had erectile dysfunction/sexual inactivity, 20% urinary incontinence and 14% had bowel symptoms. Moderate and severe distress was also noted.
17. When insurance payment reimbursement for ADT hormone therapy decreased so did the number of patients being prescribed ADT therapy [17,18]. ADT therapy can often have devastating side effects.
18. Your privacy and confidentiality is just an illusion. HIPAA exceptions and loopholes often sanction privacy breaches. This can results in copying, distribution, downloading and viewing of patient files by numerous individuals without a patients knowledge or consent. By law, cancer reporting is mandatory for studies, research, etc.
19. Because of the unlimited potential for harm, the risk of overtreatment and the questionable benefits; as of 2018 The US Preventive Services Task Force (USPSTF) is now recommending for PSA testing and screening: Men 55 to 69, letting men decide for themselves. For men over 70, no screening at all is recommended. https://www.youtube.com/watch?v=tYii98gcejA https://www.uspreventiveservicestaskforce.org/Page/Document/UpdateSummaryFinal/prostate-cancer-screening1
20. Understated and undisclosed harm: After prostate cancer treatment, ED estimates are deceptive because statistics are almost always quoted after the use of ED drugs. ED percentages are substantially higher without ED drugs. Similar deceptive tactics also apply to incontinence percentages and other side effects. Prostate cancer treatments typically have multiple undisclosed and understated long term side effects.
21. Per some experts: Prostate cancer can possibly be spread by invasive procedures such as biopsies, prostatectomy, TURP, LDR and HDR brachytherapy or insertion of fiducials for radiotherapy. Invasive procedures can also cause ED, infections, urinary problems, complications, sepsis and occasionally death.
22. Patients have a 1% to 3.5% chance of having the biopsy switched, mislabeled or contaminated with a different patients biopsy at the doctors office or lab. This is excluding false positives, false negatives, Over and Under estimated Gleason scores. An incorrect biopsy report can have disastrous consequences for patients and can result in over or under treatment.
23. Abuse, incompetence, apathy is rampant in some medical facilities. Per one source 83% of sexual abuse takes place in a medical care facility.
Get the hard facts about prostate cancer testing and treatment that no one will tell you about, even after it's too late. Prostate cancer patients are often elderly, over treated, misinformed and exploited by profit motivated doctors [1,9,10,25,27]. At times profit vs. QOL (quality of life). Low-risk Gleason 6 (3+3) is a pseudo-cancer (false cancer) mislabeled as cancer; it does not need detection or treatment [1,2,9]. Don't let conventional testing and treatment, profit motivated doctors or lack of knowledge destroy your life. Prostate cancer studies and statistics are often flawed because they include Gleason 6 pseudo-cancer. Talk to the wives or girlfriends of the patients to get a more realistic account on the outcome results for prostate cancer treatment.
Recommended reading:
The Great Prostate Hoax by Richard Ablin MD
The Big Scare, The Business of Prostate Cancer by Anthony Horan MD.
The Health Robbers by Barrett, S. and Jarvis, W.
Bottle Of Lies by Eban, K.
https://urologyweb.com/ https://urologyweb.com/uro-health-blog/ https://grossovertreatment.com https://medium.com/@bvorstman/is-psa-testing-for-prostate-cancer-bad-health-advice-7199618e56c5
https://urologyweb.com/unreliable-psa-based-screening-prostate-cancer-hoax-part-1/
The BIG lie, "Prostate cancer screening and early detection saves men's lives". Let's do the math: Per the USPSTF (a US government health agency): "A small benefit and known harms from prostate cancer screening" and "Only one man in 1,000 could possibly have a life saving benefit from screening". However about 1.3 to 3.5 deaths per 1,000 from prostate blind biopsies [5]. Also 5 men in 1000 died and 20.4% had one or more complications within 30 days of a radical prostatectomy [15]. This does not include deaths and injuries from other procedures, medical mistakes, increased suicide rate, ADT therapy complications, heart attracts, etc, caused by screening and treatments. Does prostate cancer screening put men's health and lives in danger? YES! Early detection and treatment has killed or destroyed millions of men's lives worldwide. https://www.youtube.com/watch?v=tYii98gcejA https://www.uspreventiveservicestaskforce.org/Page/Document/UpdateSummaryFinal/prostate-cancer-screening1 https://medium.com/@drsadeghi/early-detection-disaster-4d4740ee5828
Other common exaggerations, deceptions, lies and exclusions you may or may not read or be told: Robotic nerve-sparing prostatectomy is the "gold standard" with fewer side effects (In my opinion a prostatectomy is the worst treatment option). Prostatectomy side effects will diminish over time. The results are the same for radiation and surgery. Prostate cancer deaths are increasing because of the USPSTF recommendations for optional screening. We are close to finding a cure for prostate cancer (A cure for prostate cancer would result in the unemployment of thousands and the loss of billions of dollars in treatment revenue. It is unlikely a practical and effective cure will ever be approved for use). The side effects from ADT therapy are only temporary, once the treatment is stopped all the side effects will subside. Testosterone causes prostate cancer to grow (If this was true all healthy young men would be at risk for getting prostate cancer). You do not need testosterone to have a healthy life, we have many patients doing good on ADT therapy. Having a few minor side effects is worth not dying from prostate cancer. Diet and exercise will help with ADT therapy side effects or other treatment side effects. Treatment side effects are less of a concern with all the new technology. Our care (or clinic, etc) is world-class. We must treat ASAP to get the best results. A prostate biopsy is completely safe. Over age 55 a PSA test is highly recommended. The PSA and DRA test is the best testes for finding prostate cancer. If I had cancer, this is the place I would be treated. That new treatments is unproven and possibly dangers, you want a proven treatment with a good cure rate. I can not give you your test results until the doctor reviews them or it takes 2 weeks to get your test results back. We only radiate the prostate and the radiation is vary precise. We have excellent aftercare for side effects, if you have any. ED and incontinent are the only side effects, they occur less often with this treatment and they can be effectively treated. Our nurse Susann will help you with any side effect you may have. Radiation or surgery will not affect your libido or orgasms. With some work you can still have a great sex life. Your records and questionnaires are "strictly confidential". We never share your information or records, that is forbidden by the HIPAA laws. Patients are treated with respect and dignity (the location and nature of the cancer makes this difficult or unlikely). Clinical trials are safe and strictly regulated. That complication it is rare. Regrets for this treatment are rare, we have a vary high satisfaction rate. Our 5 year cure rate is vary good (Typically for low risk cancer cure rates are outstanding and treatment is usually unneeded. Usually excluded is an estimated 8 to10 year cure rate for unfavorable intermediate and high risk cancer). This pamphlet (or book, booklet, brochure, guide, video or website, etc) will tell you everything you will need to know; we want our patients informed and educated (almost all guides, etc will exclude vital information, multiple dangers and side effects). Our entire team works together to help you fight your cancer every step of the way. Our entire staff is very professional. This is the best treatment for you. This therapy is well tolerated. Exclusions, deception, underestimated and undisclosed side effects are vary common; also treatment failures are common for unfavorable intermediate and high risk prostate cancer at 8 years. Treatment is probably unnecessary for low risk prostate cancer. Per a recent poll, much of the prostate cancer information on Youtube and the internet is misleading or in error. In my opinion some of the information is fraudulent, devised to misinform and convince men to seek unneeded testing and over treatment with undisclosed side effects.
A medical holocaust: Multiple studies have verified more deaths and harm caused by prostate cancer testing and treatment than from prostate cancer itself. Medical mistakes are the third leading cause of deaths in the USA, More then suicide, firearms and motor vehicle accidents combined [13]. Yearly 4.8 million hospital patients suffer from needless harm and 440,000 hospital patients die because of errors or hospital-acquired infections. If a fraction of this number of deaths occurred in any other industry (aircraft, automotive, construction, transportation, etc.) because of mistakes you can bet a number of people would be charged and put in prison for negligible homicide, depraved indifference or reckless endangerment. However doctors, nurses or caregivers mistakes and intentional harem are almost always overlooked. Per the FDA, 106,000 deaths per year (Over one million people in 10 years) from prescription drugs. July is when medical students graduate and begin residencies. It is the most dangerous month to visit a hospital, deaths due to errors spike up to 33% and weekend deaths up to 16% higher. Per one study 1 out of 14 patients with negative test results never received that information from their doctors. If you are having an examination, procedure, test or surgery, you may want to insist on no interns, trainees, students, observers, etc, because of infections, mistakes, distractions, confidentiality and privacy issues. Patients who are under general anesthesia are extremely vulnerable, exposed and defenseless; sometimes exploited, abused or neglected (see a patients dignity). I know of 2 patients killed by medical mistakes, one got hepatitis from a colonoscopy and the other death was from an upset ER nurse forcing a tube down his throat causing lethal damage. https://aacnjournals.org/ccnonline/article/29/1/12/4182/Incompetence-Among-Critical-Care-Nurses-A-Survey
Patients should not be naïve. "Ignorance is Bliss" and sometimes extremely dangerous: Medical mistakes are the third cause of deaths in the USA. Medical mistakes cause more deaths than suicide, firearms and motor vehicle accidents combined. Countless other patients have been harmed by medical mistakes. You may want to avoid a teaching hospital for numerous reasons. If you are having a procedure or surgery, you may want to insist on no interns, trainees, students, observers, etc. Also takes precautions if possible. Have someone qualified or knowledgeable monitor you and your medications, etc. Doctors, nurses and technicians can be profit motivated, use outdated procedures, be lazy, incompetent, make mistakes, and be apathetic or rushed. Occasionally harm can be done or not prevented with intent or for profit. 10% to 20% (up to 24%) of nurses abuse drugs because of easy access [4]. Hospital staff often work 12 hour shifts, further contributing to medical mistakes because of fatigue. Doctor's offices and clinics can see many patients in a relatively short amount of time (4 patients per hour, per doctor is often typical). This may be a disadvantage to patients, empathy and quality of care can sometimes be compromised. The staff usually gets paid the same regardless if patients receive poor or outstanding care. Caregivers can become desensitized, abusive and callous. I personally know or have had contact with at least 12 doctors, nurses or other medical staff that I would consider dangerous: Under age/minors, profit motivated, incompetent, careless, dishonest, lazy or apathetic, sadistic, sarcastic and abusive, mentally disturbed (crazy) or drug abusers (see my story). Most of these people did not have a name tag and supplied me with a first name only when asked for a name. One of my neighbors is a mentally ill, pot smoking traveling nurse with hygiene problems that In my opinion is extremely unstable and dangerous. I am now sure modern medicine sometimes protects the guilty and incompetent, also sometimes victimizes the naive patients. I now understand why medical mistakes are the third leading cause of deaths in the USA. I now believe some or most of the deaths and injuries are preventable and sometimes intentional. Medical workers can know everything about a patient, hide behind anonymity, do patients irreversible harm or death. The patient may not even know his or her first name. TV, movies and sometimes the public idolize doctors, nurses and caregivers; however, the healthcare profession has about the same amount of abusive or incompetent workers as other occupations. I have also had excellent doctors and nurses; however, this may not protect us from the incompetent ones. What are the reasons nurses get fired: 1. Prescription drug abuse (because of easy access to drugs 10 to 20% [4] and up to 24% use drugs). 2. Too many mistakes. 3. Code of conduct and privacy violations. 3. Bad attitude. 4. No proper licenses 5. Abuse of patients. If they get fired often incompetent health care workers can just find another job, without any repercussions. 100,000 doctors, nurses, and others are abusing prescription drugs every year. A career in the medical field can sometimes present opportunities for drug addicts, the profit-motivated, sadists, misogynist, misandrist, narcissists, psychopaths, voyeurs and occasionally rapists and serial killers. Patients in nursing homes are most vulnerable to abuse. Employee screening is often deficient. Patients should be aware that sometimes QOL (quality of life) may be secondary or an absent goal in treatment. Sometimes overtreatment for profit or to prevent an unlikely death or metastization from low-risk cancer may be the primary or the only goals of prostate cancer treatment. Many men may not be prepared for or have unrealistic expectations about the outcome, physical and psychological impact of testing and treatment for prostate cancer. https://jamanetwork.com/journals/jamasurgery/article-abstract/2736337
Your privacy and confidentiality is just an illusion: Under the HIPAA law, all access to your records is allegedly by "A need to know" and "Minimum necessary" basis only and "you have a right to know" what is in your records. This is all huge lies. Multiple medical workers (sometimes dozens, hundreds or more) can know the results of a test, diagnosis, etc, have access to your medical records without your knowledge or consent and can refuse to tell you anything. You do not own your medical records. Your records can be sold. Even a clinic or hospital receptionist or phone operator can have complete access to your records. By law in California and most other states if your medical records are in error they can not be corrected, you can only add a short addendum. So if your medical records specify you are 110 years old, 8 feet tall, a conjoined twin and have late-stage syphilis (all in error) by law it is not a requirement (and it is not permitted) to have any errors corrected in multiple states. An Error can also be downloaded to multiple servers and cause havoc in your care. My MRI report has another patient medical history and I could not get it corrected. If your medical records contain "Sensitive information" a provider can refuse to release your records to you, however multiple employees and others will still have access to your records. Autopsy reports and death certificates are public records and not considered private information. Cancer reporting is mandated by law in the USA (excluding skin cancer). All patient (cancer and non-cancer patients) can have files duplicated (downloaded) numerous times by multiple databases. HIPAA has numerous loopholes and exceptions. State laws override HIPAA federal laws, so HIPAA can sometimes be rendered even more deficient. HIPAA provides an illusion that gives a false sense of privacy and confidentiality. Health care providers and insurance company's are HIPAA regulated, many other companies have no privacy regulations and can sell your information to anyone. Even excluding violations, HIPAA will often not protect your privacy. Many privacy statements are convoluted and confusing. By law cancer registry files cannot be sealed, deleted and may not be protected from access. A PatientPortal account will only give a patient incomplete file access, only information the doctor wants a patient to view will be accessible. Privacy laws can sometimes shield doctors, nurses, hospitals and insurance companies from investigations, lawsuits, etc. Prostate cancer patients are asked to fill out a series of EPIC questionnaires or other forms. The EPIC questionnaire asks several intimate details about patient's sex life, urinary and bowl function. By a prostate cancer patient completing an EPIC questionnaire he may be able to assist his doctor, nurse, office workers or multiple databases track his progress or decline. By refusing to fill out these forms and supplying relevant information only he can help ensure his privacy and ensure he does not unknowingly become part of a study, survey or have his information forwarded to multiple databases. The EPIC questionnaire is deficient because it does not address fatigue, depression or other multiple undisclosed side effects. Most of the time a patient has no idea who has access to medical records or why the records are being looked at. Probably everyone that works in a medical office or building has access to the records, except you (often you the patient may have limited or no access without a formal request). Often a patient is not allowed to touch, handle or look at their own records. A records request by a patient can sometimes result in delays, incomplete records given, excuses and copying charges. File access may include non-medical employees, office workers, receptionists, clerks, bookkeepers, janitors, insurance companies, college or high school interns. This may include other facilities, programmers, volunteers, cancer registries, researchers (clinical trial), drug companies, students, government agencies, etc. Often records are placed on a Health Information Exchange (HIE) or servers. Dozens, sometimes even hundreds or thousands or more people may have access to medical records. Major databases like the VA (veterans administration) and SEER (Surveillance, Epidemiology and End Results) and state cancer registers and its contractors, partners, institutions, etc are linked to Medicare records to determine "end results" for researchers, studies, drug company clinical trial offers, etc. Almost anyone could have access to your records. Medicare, VA, SEER and cancer registries are just some of many databases. Servers, both government and private are sharing information. Also "health surveillance" and "data mining". Health information may be shared by millions of entities and servers all over the USA and sometimes the world. Records may be packaged with others and offered for sale, this does often happen on "the dark web". If a doctor, patient, insurance company, pharmacy or lab is involved in a criminal or civil case; medical records may become public court or law enforcement records. Financial and medical Identity theft is also a problem, often expensive and difficult to correct. Hacking and Ransomware is also a growing problem. Your records can be accessed by anyone (trainees, volunteers, college or high school interns as young as 16 years old "for training purposes" or any other reason, all without your knowledge or consent. For example; a volunteer, high school or collage intern can also read records about your prostate problems, your wife's hemorrhoids and your daughter's yeast infections and all files for any patient, all within the HIPAA guidelines. Would you like to have your neighbor or a high school student intern that perhaps also lives in your neighborhood or attends school with your children read over your extensive family member's medical records and personal information? These people do not have to be employed by the facility or have a background check. All patients should avoid supplying unnecessary information whenever possible. Supply relevant information only when filling out forms. Identity theft is common, growing problem and is often financially devastating. It is seldom a requirement to provide your social security number on medical forms. If you are asked for it, require valid justification before providing it. Medical forms can be a good source of information for thieves. A pharmacy benefits manager (PBM, insurance company) can track your prescriptions and have access to your records. Drug companies use major databases to solicit people for clinical trials and product. Even without violations, records can be accessed by multiple people and appear in multiple databases. Often medical phone calls are recorded. Often the medical field has little regard for our dignity and privacy, especially if it conflicts with training, research, studies, profit or other objectives. If you are a celebrity or you are known to anyone with access to your records (neighbor, relative, acquaintance, co-workers spouse, high school intern, etc) they would possibly (or probably) want to have a look at your medical records. In May 2017 Dear Abby did an article on this subject, "Snooping into medical records". Sometimes your paper records end up in the trash for any dumpster diver to recover. The best way to protect information is not to divulge it. Your electronic records can even cause you harm: https://www.wbur.org/commonhealth/2018/03/27/ehr-design-patient-harm https://www.verywellhealth.com/hipaa-patients-and-medical-records-privacy-myths-2615514 https://www.techrepublic.com/blog/it-security/your-medical-records-hipaa-and-the-illusion-of-privacy/ file:///C:/Users/Admin/Downloads/israel%20(1).pdf
Cancer Registries, mandatory privacy breaches: Months after my cancer treatments ended I started receiving disturbing advertisements and clinical trial offer in the form of indiscreet postcards and letters. The SEER database staff referred to my state cancer registry. After some investigating, I learned; 1. Per HIPAA and state laws cancer reporting is mandatory (excluding skin cancer). 2. By law, your cancer records cannot be deleted or sealed and are often not protected. 3. HIPAA has numerous exceptions and loopholes. 4. Anyone with a reason can apply for access to all cancer records in the database. Multiple names with unknown backgrounds can be submitted by one person. 5. Researchers, students and others can have immediate access to your records however if you want a copy you will be required to fill out forms and verify your identity. 6. Cancer Registry WebPages will tell you "Your information is safe" and "your information is de-identified" and how very important your privacy is to them. This is all lies. The convoluted disclosures, advertisements and clinical trial offers will indicate otherwise. Also files that have been de-identified can easily be RE-indentified 87% of the time using only the birthrate, sex and zip code (all contained in the de-identified file) and using the appropriate software. https://www.youtube.com/watch?v=yvV-f0hFowA The only deterrent a patient can try is submitting a formal opt-out request for clinical trials to his or her state cancer registry. However, this may only give partial confidentiality. The responsibility will be left to the patient to submit the request, the patient will not be informed or contacted by the registry otherwise. http://ccr.ca.gov/Inside_CCR/FAQ.shtml https://www.naaccr.org/hipaa-resources-cancer-registries/
Your dignity, wellbeing and protection? More dirty secrets: Nudity, humiliation, pain, anxiety, stress; additionally in a hospital, drugs, catheters, cold and sleep deprivation, etc during care will breakdown resistance and may result in gaining control and submission of patients. Once a patient is broke-in or broken they will often submit to almost anything, necessary or unnecessary testes, treatments, examinations or surgery often without question. The same nudity, humiliation, pain, anxiety, stress, drugs, cold and sleep deprivation are all clandestine tactics use in interrogations to gain cooperation and to break POW's, operatives, insurgent, etc. This tactic may not be intentional in a medical setting however it is a reality. Caregivers can sometimes become desensitized, abusive and callous. Abuse, incompetence, apathy is rampant in some medical facilities. Per one source 83% of sexual abuse takes place in a medical care facility. "Power tends to corrupt and absolute power corrupts absolutely"; Allowing a depraved, lazy or incompetent caregiver (Male or female) complete power over a unconscious or impaired patient could end badly for the patient. Prostate cancer testing and treatment can be stressful, degrading, demoralizing and embarrassing. According to the National Institutes of Health (NIH), per one study 80% of men with ED never seek treatment because of these same reasons. After his surgery, one depressed patient stated his prostate and his dignity was both removed and discarded. If you are having an examination, procedure, test or surgery, you may want to insist on no contact with interns, trainees, students, observers, etc, because of germs and infections, mistakes, distractions, privacy and confidentiality issues. When a patient is unconscious it is assumed they are giving "implied consent" to almost anything a caregiver wants to do to them. In 90% of states, doctors, nurses and medical students are legally allowed to give unnecessary urinary catheters, pelvic, breast, rectal, testicular, prostate exams and other unnecessary procedures on patients who are under anesthesia without being given "explicit consent" to do so. Often multiple times by many students or interns for training purposes or any other reason. Also, multiple observers is sometimes common. https://www.elle.com/life-love/a28125604/nonconsensual-pelvic-exams-teaching-hospitals/ You may want to avoid a teaching hospital for multiple reasons. However, caregivers at almost any hospital could do almost anything to any patient when they are unconscious for training purposes or any reason because of "implied consent". This is a common practice to train new nurses, doctors and interns. In a non-medical setting this would be considered assault or sexual assault. When an upset patient learn about this after her hysterectomy surgery from post operative report in a teaching hospital, she was told: "It does not matter because you were unconscious and How do you think new nurses and interns learn anything?" The drugs Versed and Fentanyl are often prescribed to give a patient temporary amnesia so they will not remember what was done to them. EPIC questionnaires can be counterproductive impact a patient's dignity, privacy and confidentiality. The EPIC questionnaire is not a requirement to fill out and the term "strictly confidential" can be misleading. One patient stated that he filled out and turned in his "strictly confidential" EPIC questioners only to have every female office staff member read it and ogle him. Only one of them had any involvement in his care. He stated that he became very uncomfortable and discontinued his appointments. Many women prefer or will only see female doctors. Almost all gynecologists will only employ female staff. Over half of men prefer a male doctor. Per some respected doctors: Many men still avoid medical care because of embarrassment and honest answers will often not be given if asked by a female. Per some studies, a significant percentage of men will feel uncomfortable or will completely avoid medical care if a female doctor, nurse or staff member provided it for male issues. Some men would prefer illness, no treatment and sometimes even death over embarrassment. Per one survey over 10% of men at some time have been abused or had inappropriate comments by doctors and nurses. Some men are more likely to seek or accept medical care for personal health issues if the staff (point of contact) is male [26]. New male patients seeing female doctors are 60% likely not to return. https://www.wbur.org/commonhealth/2017/09/08/patient-doctor-female-male-bail http://drlinda-md.com/2016/11/men-patients-forced-man-medical-setting/ http://www.sexualmisconductbydoctors.com/maletips.aspx http://patientmodesty.org/index.aspx
https://www.verywellhealth.com/patients-medicine-modesty-healthcare-2615000 https://www.kevinmd.com/blog/2011/11/embarrassment-reason-men-doctor.html
https://www.elle.com/life-love/a28125604/nonconsensual-pelvic-exams-teaching-hospitals/
http://www.sexualmisconductbydoctors.com/importanttips.aspx https://www.naturalnews.com/031155_medical_students_anesthesia.html
http://patientmodesty.org/surgeryviolations.aspx
http://uhsbehindcloseddoors.org/abuse/
https://www.elle.com/life-love/a28125604/nonconsensual-pelvic-exams-teaching-hospitals/ https://www.youtube.com/watch?v=rwjD4d-5vh8
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0188258
Foley follies. The infection connection. More unnecessary infections, injuries, pain and abuse: Urinary (Foley) catheters are the leading cause of hospital infections.Per studies,overuse of Foley catheters is estimated at 21% to 50%. Continued inappropriate use (forgotten Foley) is estimated at 40% to 50% of the time. A Foley catheter is standard for many surgeries that do not need them. A Foley has numerous health and safety hazards, pain and discomfort, etc. About 80% of hospital urinary tract infections are caused by Foley catheters. As high as 30% of male urinary catheter use causes injuries. Foley catheters are not a treatment or cure for incontinence. If you are going into a hospital, take precautions to ensure you are not unnecessarily catheterized. A Foley can cause moderate to severe distress, embarrassment also pain infections, injuries, etc in patients. Caregivers can often become desensitized, abusive and callous. A Foley can be removed without a nurse exposing, touches or traumatizing patients (especially the young or teenagers). The patient can be in the seated position wearing a hospital gown, boxer shorts, etc; the balloon can be deflated by a nurse and the catheter will just come out very tactfully. A patient can remove his or her own Foley using a scissors, See video: https://www.youtube.com/watch?v=ruNWGrE7wvw Other Foley info:http://www.patientmodesty.org/catheterizations.aspx https://www.catheterout.org/ https://www.fortherecordmag.com/archives/102212p22.shtml
Follow the money $: If a surgeon is financially responsible for operating expenses, a large staff or an oncologist is also responsible for a lease on millions of dollars in radiation treatment equipment, do you think they would be more or less honest about the benefits and hazards of treatment when recommending treatment? Do you think the profit margin would compromise some doctor's ethics? What is the purpose in over testing and treating cancer that often will not spread (testing and treatment frequently cause lower quality of life, ED, incontinence, depression, fatigue, etc) if it was not extremely profitable? The medical field is alluding to the fact that prostate cancer testing and treatment may do more harm than good. Doctors are often encouraged to over-treat in hospitals. Because of the unlimited potential for harm and the questionable benefit, for 2018 The US Preventive Services Task Force (USPSTF) is now recommending for PSA testing and screening: Men 55 to 69, letting men decide for themselves. For men over 70, no screening at all is recommended. https://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/prostate-cancer-screening Prostate cancer patients are often elderly and exploited for profit. The treatments offered have horrible side effects. Prostate cancer is often slow-growing and of low risk and can just be monitored. Often no treatment is the best treatment. Over testing and treatment has been verified by numerous experts, studies and investigations, documentation, etc. Getting a treatment recommendation from a doctor who profits from the treatment is sometimes a mistake. [1,9,10,17,18,25] https://urologyweb.com/uro-health-blog/
A 12 or 18 core blind biopsy, holey prostate! One million dangerous prostate blind biopsies are performed in the USA each year and they should be banned: Invasive, dangerous, degrading and unnecessary. Men with a high PSA tests result are often sent to a urologist for a blind biopsy. This technology is (obsolete) 30 years old. Would you use a cell phone or drive a car that was designed 30 years ago? Blind prostate biopsy cost in the USA is at least $3 billion annually. False positives and false negatives can occur. Men should be told about other options; Percent free PSA test, 4Kscore test, PCA3 test or a 3T MRI test before receiving a blind biopsy. These tests can often eliminate the need for a risky and invasive blind biopsy. Unfortunately, sometimes insurance companies may not pay for other tests. Insertion of 12 or 18 large hollow needles through the dirty rectum into a gland the size of a walnut, a blind biopsy can result in pain, infections, a risk of temporary or permanent erectile dysfunction [22,23]. Biopsies can cause, urinary problems, 6.9% hospitalization within 30 days from a complication[11], sometimes even death from sepsis (About 1.3 to 3.5 deaths per 1,000)[5]. There is also debate that a biopsy may spread cancer because of needle tracking. A blind biopsy is degrading and can also increase PSA reading for several weeks or months, further frightening men into unnecessary treatment. Blind biopsies are almost never performed on other organs. One prestigious hospital biopsy information pamphlet states: semen color has a rust tint. Another well-known hospital describes semen as: reddish or brown. These statements can be an extreme exaggeration (mostly lies). After a biopsy, a man's semen can turn into a jet black goo. This could be an unpleasant surprise for a man and especially for his unsuspecting partner. However, if a biopsy is performed before Halloween or April Fools' day this may be of use to a few men. If some prestigious hospitals are not factual about the color of semen, what other facts are being misrepresented? [5,11,22,23].
Bone scan scam: Prostate cancer patients are often sent for a bone scan. A bone scan has about a 13% chance of having a false positive and only 3 men in 1,000 have bone cancer who have a bone scan. Bone scans may be unnecessary in low-risk prostate cancer patients.
Low-risk cancer patients or patients with short lifespan are often sent for aggressive treatment by some doctors when monitoring is often a better option: In my opinion. An extreme example of overtreatment is one SBRT radiation clinical trial. Prostate cancer patients were intentionally treated with a huge dose (50Gy total, 5 fractions) of radiation resulting in disastrous long-term side effect for some of these men. The typical SBRT dose is 35 to 36.25 Gy, 5 fractions. A large percentage of prostate cancer patients in this clinical trial had low-risk prostate cancer and may not have required any treatment.
Clinical trials may (or may not) be hazardous to patients: The goal of a clinical trial is to collect information; the intent is not necessarily to help or cure patients. In a clinical trial, if someone is given a treatment that will harm them (as in the above example) or given a placebo in place of treatment or needed treatment is withheld, the patient may be deceived or harmed. Investigate before you participate in any clinical trial. Even if you do get a safe and effective treatment, it may not be available to you after the clinical trial is over. If the trial is for a drug, you will not be told if you are getting a drug or a placebo until after the trial is over.
Becoming radioactive: LDR Brachytherapy (permanent radioactive seed implant). This procedure implants 60 to 200 radioactive seeds in the prostate. The prostate is about the size of a walnut. Sometimes resulting in urinary problems, pain, complications, etc. The patient may set off radiation alarm at airports, seaports and border checkpoints. He will also be required to use a condom initially, have no close contact with pregnant women, infants, children and young pets for months or longer. Occasionally he may even eject dangerous radioactive seeds during sexual activity or urination. The patient will become like a walking Chernobyl, having radioactive scrap metal in his crotch and emitting hazardous radiation from his crotch for months and up to 1 or 2 years. He will also be required to carry a card in his wallet stating he is radioactive. If he dies cremation may be a big problem because of the radioactive seeds. Anesthesia and a catheter will also be required. LDR Brachytherapy has a probability of ED and other sexual dysfunctions. In my opinion, this treatment is a bizarre and poor option.
ADT Hormone therapy, big profits and devastating side effects. ADT therapy, chemically induced (female) menopause in men: ADT injections are a common and expensive treatment. Men are prescribed ADT hormone therapy, AKA chemical castration as an additional or only treatment. ADT therapy is sometimes overprescribed for profit, per some studies. Hormone therapy is often very expensive (Profitable for doctors if provided at the doctor's office). It can have horrible, strange and devastating side effects; feminization, hot flashes, fatigue, weight gain, metabolic syndrome, long-term or permanent ED, over 40% depression, cognitive issues, the penis could shrink and testicles can completely disappear, he may grow permanent breasts. This treatment can have numerous mind and body altering side effects. ADT will substantially increase your risk for a heart attack and Alzheimer's. One man stated that ADT therapy turned him into an emotional, obese, menopausal woman with breasts, and almost no male genitals. Some of the changes from ADT therapy can be permanent. Another man stated he would cry all the time and became addicted to the Hallmark Channel. Men are sometimes actually castrated (orchiectomy) as a cancer treatment to reduce testosterone. The profit motivated and possibly the incompetent could over prescribe ADT therapy for men per published studies. Studies (Medicare and financial) have documented doctors do over prescribe ADT therapy for profit (depending on Insurance payout rates/profit margin). When insurance payment reimbursement for ADT decreased so did the number of men patients being prescribed ADT therapy [17,18]. Overtreatment with ADT is extremely profitable, unfortunate and often avoidable.
Major surgery, major side effects. More lies and exaggerations: Nerve-sparing Robotic prostatectomy is often touted as being a better treatment ("The gold standard") and having fewer side effects, this is usually an extreme exaggeration (a huge lie). Per a Johns Hopkins study 4 in 10 hospitals make untrue claims about the outcome of robotic surgery. Robotic surgery can result in a faster initial recovery. The nerves cannot always be spared. Scores of lawsuits have been filed against urologists performing robotic prostate cancer surgery, device manufacturer and the hospitals. Surgery candidates are mislead and told ED percent outcome for both radiation and surgery is the same at 2 years after treatment. However they will not be told that radiation patients are usually a lot older and the baseline/starting ED rate is much higher for them. Therefore the ED rates (and incontinent) for surgery is the worst of the 2 options. Decreased libido by 61%, pain, Long-term risk of incontinence, fatigue, ED rates at 40% to 85%, depression, 20% of men will ejaculate urine, men will have a shorter penis, etc is about the same as conventional surgery. Patients undergoing surgery are at about a 22% chance of long-term or permanent fatigue. A catheter will be required. 0.5% died and 20.4% had one or more complications within 30 days of a prostatectomy [15]. After his surgery, one patient stated his prostate and his dignity was both removed and discarded. Patients can have unrealistic expectations about the results and regret this option. The ED rates and other side effects are often understated to patients. One study found that prostatectomy related regret increases over time, 47% of men at 5 years after surgery [29]. In my opinion, this is the worst treatment option with a high potential for harm. Men are often left limp and leaking after this surgery [1,2,3,14,15]. https://medium.com/@bvorstman/the-radical-robotic-prostatectomy-unsafe-in-any-hands-f88cc15d8852 https://medium.com/@bvorstman/is-robotic-prostate-cancer-surgery-bad-health-advice-7894a431e6fa https://urologyweb.com/robotic-prostate-surgery-complications/ https://urologyweb.com/uro-health-blog/ https://urologyweb.com/is-robotic-prostate-cancer-surgery-bad-health-advice/ Also read Darryl Baillie story http://www.yananow.org/display_story.php?id=1738 https://www.youtube.com/watch?v=xaXIpQ-3x0E https://thewilddoc.com/sex-life-after-prostate-cancer-surgery-the-truth-isnt-sexy/ https://medium.com/@bvorstman/robotic-deception-prostate-cancer-hoax-p-5-4edd78312ce
Depression in prostate cancer patients is common, 27% and 22% at 5 years [6] and for advanced prostate cancer patient's depression is even higher. Prostate cancer patients are at an increased risk of suicide. The use of antidepressants increases after prostate cancer treatment. Men are seldom screened for anxiety and depression after treatment. Suicides occurred up to 4 times more often in prostate cancer patients. Antidepressants and anti-anxiety drugs can have multiple side effects and strong withdrawals symptoms. https://www.youtube.com/watch?v=X-BsVpt47zE https://www.youtube.com/watch?v=a4PSznQCvHQ
The risk of chronic or permanent fatigue (that can result in depression and suicide) is often understated if disclosed at all. Per some studies and depending on your treatment; the risk of chronic fatigue is about 25% to 60%. Radiation with ADT therapy has a high risk of fatigue.
Conventional prostate cancer testing and treatment, Quackery, butchery and Frankenstein medicine? Castration (orchiectomy), ADT therapy (chemical castration), LDR Brachytherapy, radical cryotherapy, surgery, chemotherapy and blind biopsies are often dangerous, psychically and emotionally brutal, traumatic and disturbing. In my opinion, these types of treatments are primitive and almost beyond belief in today's world of advanced technology. It seems all of the best treatments for prostate cancer have not been approved and some are only available outside the USA. Newer treatments like HIFU, hyperthermia, Conexus, Nanoparticles, Vessel-sparing SBRT, Lutetium 177 PSMA, Boron Neutron capture therapy, CBD and THC, Gold Nanoparticles, TOOKAD, PARP Inhibitors, Platinum, Fenbendazole, TULSA-PRO, focal ablation (laser, IRE Therapy, etc) and orphan drugs (dichloroacetate, etc) should be approved and used when appropriate. It often takes years or decades or never for new treatments to be approved. If no profit is to be made as in orphan drugs, no approval should be expected. Biopsies should be limited to selective MRI guided samples only; blind biopsies should never be performed. Per some studies, The supplements Astaxanthin or vitamin D3 may prevent prostate cancer from becoming aggressive [16]. Melatonin may also be of use https://fullscript.com/blog/how-melatonin-works-to-fight-prostate-cancer Newer prostate cancer testing and treatment is available in the USA at some locations. I have no affiliations with any of them. Look for IRE, Laser or focal Ablation and no blind biopsies. I have listed some location as a reference: https://urologyweb.com/ https://vitusprostate.com/en/ https://sperlingprostatecenter.com/contact/
Prostate Radiotherapy. The gift that keeps on giving, damage from radiation will increase over time:(EBRT-external beam radiation therapy) for cancer treatment. New technology consists of Proton, IMRT, SBRT, IGRT, VMAT, TrueBeam, Cyberknife, etc. This newer, faster, more accurate and easier to set up radiation equipment is of many benefits for doctors, staff and a good selling point to patients. However, as far as reducing long-term side effects a patient should be extremely skeptical if exaggerated claims are made about reduced long-term side effects, especially fatigue and multiple forms of sexual dysfunction from newer equipment. Radiotherapy can sometimes cause hip and bone problems later in life. 44% decreased orgasm intensity and multiple forms of sexual dysfunction [8,21]. No semen or low volume, discolored semen and pleasureless organisms (ejaculatory anhedonia). EBRT and most treatments have multiple undisclosed side effects: https://www.issm.info/news/sex-health-headlines/external-beam-radiation-therapy-may-have-neglected-side-effects-study-sugge/ Patients should inquire as to the treatment plan: Gy dose and fractions, margins, testicular dose, constraints and age of radiotherapy equipment to insure excessive radiation exposure treatment is not given that can result in additional side effects. Patients should be aware that pelvic shaving, small permanent tattoo markers, fiducial marker (small seeds) are sometimes placed in the prostate, MRI, CT scan, photographs, catheters and other procedures may or may not be required. Radiotherapy can also occasionally result in secondary cancers and damage to "organs at risk" (organs close to the prostate). Some of the studies on proton therapy and ED are biased because they only include men under 60 years old. Radiation has a high probability of sexual dysfunction and fatigue, just as high with the newer equipment. ED rates estimated at 35% to 75% or higher, 93% at 15 years [8,14,21]. Sometimes radiation can also cause bowel and urinary problems. A 5-day SBRT radiation treatment is now commonly available with about the same results and side effects as a 9 week radiation treatment. A doctor with a multimillion-dollar lease and maintenance agreement on radiotherapy equipment and a large staff may or may not be influenced by his or her financial obligations when deciding to recommend over testing and treatment. A patient may want to consider "Vessel-sparing SBRT or other EBRT" as the best of the bad treatment options?
Fried nuts, two: Prostate radiotherapy (EBRT/SBRT) can sometimes result in a 5% to 30% or more temporary or permanent drop in testosterone levels, excluding hormone therapy. This drop is determined by the testicular radiation dose (treatment equipment and planning) [19,20]. A below normal drop in testosterone can result in fatigue, depression, sexual dysfunction, weight gain and other symptoms. Always ask for a printout of testicle dose and constraints for prostate radiotherapy to insure your testicles are not over radiated, also include the CT scan exposures. With radiotherapy robotic arm equipment and the testicles included in the treatment field can result in a major drop in testosterone. If your being treated with robotic arm radiotherapy equipment demand "Testicular Avoidance (TA) beam arrangements". Have your testosterone levels tested before and months after any EBRT prostate treatment.
Chemotherapy can be extremely toxic and sometimes deadly: Any cancer patient (man or woman) who are being offered chemotherapy should be particularly cautious. Without proof of the effectiveness of the specific chemo drug being used on the exact cancer type being treated, chemotherapy can often be more toxic to the patient than to the cancer. Chemotherapy may be extremely expensive, profitable for some doctors (if dispensed by the doctor and not by a third party) and can be misused or overused, often for profit. The "chemotherapy concession": A doctor may purchase a number of chemo drugs for $10,000 and charge a patient $20,000. A doctor can also receive a percent kickback from the drug company for prescribing the drugs. This is a well documented and common practice. Per some studies: 75% of physicians in the world would refuse chemotherapy if they had cancer and Chemotherapy may have a high failure rate. One Michigan oncologist who committed fraud and gave $35 million in needless chemotherapy (for profit) to patients, some who did not even have cancer is now in jail for 45 years. He was running his own in-house pharmacy. The nursing staff was indifferent and the state regulatory agency initially cleared him of any wrongdoing (a cover-up). Some chemo drugs are considered a biohazard.
Long-term care for side effects is often lacking, exploitive, costly or ineffective: Long-term care consists of regular PSA testing for years. Long-term side effects often consist of fatigue, bowel or urinary problems, sexual dysfunction, depression, isolation and sometimes suicide. Patients with complaints of chronic fatigue are often told to exercise, get plenty of sleep, pace yourself and eat a healthy diet; this advice is of limited help for chronic fatigue. Often treatments for long-term side effects are embarrassing, degrading, unavailable, nonexistent, costly, not effective, not offered or bothersome. Billions of dollars are profited from ED drug and other ED products, catheters, pads and diapers, drugs for depression, pain, insomnia or incontinence, additional treatments and surgeries for side effects. Also, treatments for the side effects of hormone ADT therapy (chemical castration) are sometimes required. My long term care is almost nonexistent, see "My story".
Aging, exploitation and elder abuse: The elderly are the ideal victims for profiteers, scammers, sadists, etc. About 10 percent of people over the age of 60 have reported being abused. If any man lives long enough it is very likely he will have a prostate problem, low testosterone or some form of sexual dysfunction. In my opinion, modern medicine has often been exploitive, abusive and has provided substandard care for older men in general due to all of the explanation given in this text. I believe much of the attitudes toward older Americans need improvement and they are sometimes viewed as being subhuman and exploitable by various groups and individuals. If documented cases of unnecessary surgery and radiotherapy or blind biopsies on children by doctors for profit were released, the vast majority of Americans would be outraged and this practice would quickly end. However, for older men it does not seems to be of any great concern! It is well documented that all forms of abuse do occur to the elderly and disabled in nursing homes and other facilities including neglect, theft, starvation, torture, harassment, sexual assault, etc. The elderly and disabled are being exploited in many ways. One patient after recovering from a brain injury testified that he was repeatedly abused, slapped and hit, forced to drink boiling hot tea by multiple caregivers and sexually assaulted by one female caregiver. I know of an elderly lady that is living in an expensive assisted living home that has had all of her possessions (radio, clothes, underwear, shoes, bed sheets) repeatedly stolen and replaced by her family. Scams for profit: Guardian scam, if you are declared incompetent by strangers, they can become your guardian (Guardianships or Conservatorships). You can be forced to move into a nursing home and your property can be seized and sold by them. In other words-they can steal your assets and incarcerate you. Some predators are becoming very wealthy by using this exploitation method. Make sure you have an estate trust, executor, etc [24]. AARP magazine, October/November 2018, page 62, A Legal Hostage. A chilling story: https://allnurses.com/patient-abuse-nepotism-t706360/ https://allnurses.com/abuse-t172700/ https://allnurses.com/reporting-patient-abuse-t271030/
Avoid the drug company rip off. No more exploitation!: Almost all conventional prostate cancer treatments usually result in a high percentage of erectile dysfunction. Often claims of prompt effective treatment for ED or other side effects if they occur after treatment are often misleading. After treatment, ED estimates are deceptive because rates are given after the use of ED drugs. Without ED drugs, ED rates are about double. Statistics for ED percentages from treatment are usually quoted after treatment with Viagra or other ED drugs, therefore most statistics are very misleading. ED rated at 3 years may be as high as 50% to 80% or higher for most treatments. ED rated at 15 years may be as high as 90% or higher for most treatments. For cryotherapy, ED rates are extremely high. The cost for ED drugs like Levitra, Cialis, Viagra and Muse are deliberately kept very expensive by drug companies, about $9 to $60 per 1 pill or dose. Generic PDE5I ED drugs in Canada and other parts of the world sell for about $0.50 to $2 a pill. 2 ED creams have been developed however they have not been approved for use in the USA and they may never be approved. Men are also exploited by counterfeit mail order ED drug sales. ED treatments can also be embarrassing, not offered, not practical, expensive/not covered by insurance. 80% of men will not seek treatment because or these reasons. You can get safe, inexpensive, quality generic and brand name drugs from Canada. Just get a prescription from any doctor and make sure the Canada pharmacy is CIPA licensed. Generic Cialis and Viagra for about $0.50 to $2 a pill and other drugs too. Go to www.cipa.com/certified-safe-online-pharmacies/ for a list of trusted CIPA Canadian pharmacies. You can also try Goodrx.com for drug discounts. Stop getting ripped off by American drug companies.
The numbers game, you lose. More exaggerations and lies: After cancer treatment, ED estimates are deceptive because rates are given after the treatment with ED drugs. Without ED drugs, ED percentages are substantially higher (e.g. 50% ED with ED drugs, 75% ED without ED drugs is sometimes common). In my opinion, it's just deceptive. Similar deceptive tactics also apply to incontinence percentages. After conventional treatments sexual performance seldom returns to pre-treatment levels. Anyone that tells you otherwise is lying. A doctor may state a patients chances of ED is about 35% with EBRT radiotherapy (or some other treatment). A patient may think, 35% is not too bad and if I do get ED I can always take Viagra. What a doctor may not tell a patient is that the ED rate is 35% at 1 or 2 years for a patient under 65 years old and with an ED drug treatment option. For a patient over 4 years, over 65 years old and no ED drugs the ED rate may be about 75% or higher. After age 70 your chances of ED is over 85% or higher [8]. ED rates are seldom quoted over 8 years after treatment because they are so bad. Obviously, a man is more likely to refuse treatment at a 75% ED rate verses a 35% ED rate. Results are often worse for a surgery option. With both treatments together or with ADT hormones you're in real trouble with ED percentages. Some side effects may not be disclosed at all. If side effects (Orgasm dysfunctions, low libido, increased risk of Peyronie's disease, chronic fatigue, depression, increased suicide risk, etc, etc.) are not disclosed, no percentages will usually be quoted. Suicides occurred up to 4 times more often in prostate cancer patients. Cure rates are often quoted at the 5 years mark. 5 years is not a magic number, anyone can have a treatment failure before or after 5 years. The cure rate for your treatment at 5 years may be quoted at 85%; however, the cure rate at 8 to10 years maybe only 50%. The 85% at 5-year rate was quoted to me. I was never told about my 50% at 10-year cure rate. For an estimate of your cure rate go to https://prostatecancerfree.org/ and input your treatment (remember an intermediate "unfavorable" Gleason 7 4+3 is almost the same as a high-risk Gleason 8). Always ask what is the "biochemical recurrence" (AKA rising PSA or treatment failure) rate for well beyond 5 years with your computer software simulation and Partin tables. Ask your urologist or oncologist for a 10-year cure rate. If the physician is unable to provide one, consider finding another doctor. Studies, side effects percentage claims, etc can be biased Watch out for terms like "age-adjusted" or ambiguous or excluded facts as given in the above examples. I have read and have been given some extremely exaggerated claims (mostly lies) concerning cure rated, side effects, etc. Do not believe some of the biased internet information and some of the flawed statistics, they often include low risk (fake) prostate cancer.
Cancer Survivor or The Walking Dead. Multiple undisclosed and understated side effects: After a blind biopsy and conventional treatment men can be left impotent, incontinent, fatigued, sterile, exploited, embarrassed, humiliated, demoralized, sometimes catheterized, isolated, deformed or have smaller penis, deceived or mislead, depressed, with ruined relationships and less prospects for future relationships, possibly feminized or chemically castrated or literally castrated (low or no testosterone), unsatisfying/pleasureless or no orgasms. No or low volume or discolored ejaculation, ejaculation of urine. Increased use of antidepressants, suicidal (up to 4 times more often), low libido, severe distress, left with complications, sometimes financially harmed or ruined, sometimes radiated or radioactive (Radiation side effects that get worse over time). And sometimes literally dead. Loss of libido estimated at about 45% or higher, excluding hormone therapy. After testing and treatment, your life may be very different. Prostate cancer patients are often elderly and exploited for profit [1,5,9,10,25]. Caregivers can often become desensitized, abusive and callous. Aftercare for long-term side effects can be ineffective, expensive, not offered, degrading, demoralizing, lacking or nonexistent. Prostate cancer patients are often not told about chronic fatigue, depression, increased risk of Peyronie's disease, loss of libido and the true risk of side effects are often understated. Some men can even get PTSD (Post Traumatic Stress Disorder). Your dignity, privacy and confidentiality can be disregarded.Your records can be downloaded to multiple servers. You and your medical records can be unnecessarily viewed by several people. Modern medicine can fail, victimizes and exploit prostate cancer patients. Treatment failures are vary common (about 40% to 70%) at 8 or 10 years for unfavorable intermediate and high-risk patients.
Often few good choices exist for treatment: Some medical professionals want you to go get your conventional prostate cancer testing and treatment without excessive opposition. A prostate cancer patient treatment choice often ends up being the least worst choice or the choice with the side effects a patient thinks he can tolerate. If a patient has intermediate or high-risk prostate cancer and does not have advanced age he may need treatment. He should look into other newer treatments if available. Also, he should try and avoid hormone therapy if possible because of the multiple side effects especially if the cancer is organ-confined.
My story (My exploitation and abuse): I went to see my doctor for a checkup. He had a 16-year-old girl and a 17-year-old boy high school interns that reside in the neighborhood looking over patient records (with full access to patients and all records) working in his office for the summer. When I expressed a concern about confidentiality, I was told the interns have been HIPAA trained. I consider this to be a privacy and confidentiality issue/violation. His longtime medical assistant was going through a nasty divorce and it appeared to be affecting her performance and my care. My doctor referred me out to his urologist friend because of my high PSA. I will refer to the urologist as Doctor "A"; he used old and dangerous testing technology (18 core blind biopsies), his nurse seemed to have a mental defect exhibiting arrogant, rude, strange and abusive behavior and was intent on inflicting psychological and possibly physical harm to me. Shortly after my Dr. "A" visits ended, his nurse was no longer employed at his office and no person in that office would refer to her employment or her existence. I now believe this nurse was under the influence of drugs because drug abuse is common among nurses (easy access to drugs) [4]. I was diagnosed with prostate cancer by Dr. "A". I refused Dr. "A" surgery and hormone therapy recommendation because of the imminent side effects and his unprofessional (arrogant, rude, strange, sarcastic and abusive) nurse behavior, so Dr. "A" referred me to Dr "T". Dr. "T" was outside of my insurance network; however, his office manager stated she was willing to work with my insurance, offered me a doctor consultation and would accept any insurance payment as full payment. When I arrived in his office the waiting room was empty and Dr. "T" had a large staff. Dr. "T" used older conventional technology (old equipment, 9-week radiotherapy), offered me overtreatment, hormone therapy, bone scan (unnecessary procedures and testes). One week after my consultation with Dr. "T" I received an $850 bill, in conflict with what was agreed upon with his office manager. After a recommendation from an acquaintance, I called clinic "O" and met with the nurse. She offered me treatments with a verbal guarantee of "no side effects from the SBRT radiation". However, this nurse could not answer any of my basic questions lacked any credibility and sounded like an unscrupulous used car salesman. Most of these office visits caused me multiple problems with office workers processing paperwork for tests, insurance forms and billing, etc. Two of these doctors offered me an unnecessary bone scan. Two of these doctors recommended unnecessary hormone therapy ADT (overtreatment) for my organ confined cancer. After I absolutely and utterly refused hormone therapy, both doctors admitted it probably would not help me in my final outcome because of the computer estimate run on me with my organ-confined cancer. Having no newer treatments (laser, etc) available to me at that time, I decided on SBRT treatment with Dr. "K", he could answer my questions and had new equipment. Before my treatment could start I was referred to "W" lab for an MRI. "W" lab had a trainee assisting and it took over 3 hours to complete my MRI. 2 days later after receiving my MRI report, I examined it and it had my name and some other patient PSA value and history information. I wasted 2 stressful days verifying it was the correct MRI of me and not some other prostate patients MRI before my treatment could start. By law, most medical records can not be corrected. I did receive treatment from Dr. "K". I did have a relatively fast and noninvasive treatment (SBRT), resulting in several months of fatigue, a large PSA bounce 18 months later. My aftercare is almost nonexistent. Every 6 months I have ongoing problems obtaining PSA lab request forms and test results from my radiologist's office. My PSA lad results take 3 days tor Dr. "K" office to receive and one of the lazy/arrogant medical assistants was make me wait 4 or 7 days to give me my results. I have observed that some doctors office's delay giving test results by 2 to 8 days for no apparent reason. I feel this entire ordeal aged me and I'm not sure what the future will bring? I also no longer trust modern medicine, doctors, nurses, etc. Modern medicine seems to be more of a gamble than a science. I have wasted hundreds of hours and thousands of dollars. I feel modern medicine has violated my confidentiality (see the paragraph-Mandatory privacy breaches), abused and failed me (and others) due to the lack of guidelines and regulation, still approved obsolete technology, better-unapproved treatments, exploitation, greed, apathy and incompetence. Hindsight is 20/20. If I could do it over again, I would also consider no PSA testing and treatment or traveling for newer treatments from a competent provider if practical and available. I believe if I did take the two doctors recommendations and received unnecessary ADT hormone therapy in addition to the radiotherapy my quality of life (QOL) would have been severely impacted for years or permanently and could have resulted in my early death. Months after my cancer treatment I discovered my medical cancer records have been distributed/released by my State Cancer Registry (See Cancer Registries, mandatory privacy breaches). Many health care staff have been apathetic to my distress and a few have enjoyed and intentionally contributed to my troubles.
"First, do no harm", unless you can make a lot of money and get away with it: A number of medical staff I came into contact with seemed incompetent or intended to doing me harm. I was harmed physically by Dr. "A" 18 core blind biopsy and verbally abused by his sadistic nurse. I was potentially exploited and financially harmed ($850) by Dr. "T" and offered unnecessary testing and overtreatment. Clinic "O" nurse attempted to misinform and deceive me about the treatment outcome of "SBRT treatment with no long-term side effects". I was harmed by "W" lab by mistakes and incompetence. I did also have numerous other billing and paperwork problems probably due to mistakes and apathy. I was also harmed by the release of my cancer files by my state cancer registry and SEER as explained above. A few office staff were incapable of completing some very simple tasks like filling out lab work request or insurance forms. At least 40% (probably substantially more, 50% to 60%) of the healthcare workers I came into contact with did or attempted to do some form of harm to me or provide substandard care, attempted excessive testing and treatment, mistakes, billing overcharges, blind biopsy, false statements, deception, misinformation, apathy and abusive behavior, as explained in this text. I have also observed several medical facilities do not require workers to wear name tags and when asked for a name most will give a first name only; this may also be a factor in healthcare workers not acting in an ethical manner. It seems that this prostate cancer nightmare maze was intended to be demoralizing and be of maximum physical, psychological and financial harm. Also to be of questionable benefit and to be of utmost profit for doctors. My prostate cancer experience has been one of the worst events that have happened to me in my lifetime. Also seeking testing and treatment is one of the biggest mistakes I have ever made. I specifically hold responsible modern medicine for not protecting patients from profit motivated doctors, substandard technology and a lack of regulations that would protect patients. I would have probably been better off going to a Voodoo or witch doctor. I would have saved thousands of dollars, time, had no side effects, no paperwork, more confidentiality, privacy and less abuse. I probably could have received better advice? I could have received a nice amulet or a good luck charm to protect against sorcery and magic (conventional prostate cancer testing and treatment) and evil medicine men and witches (profit motivated doctors, incompetent or abusive staff and loony or drug crazed nurses). [13,4]
My lack of a good treatment choice. A No-win situation: Side effects; surgery-pay now or Radiotherapy-pay later. Because castration (orchiectomy), ADT therapy (chemical castration), prostatectomy, Chemotherapy, LDR Brachytherapy and blind biopsies are what I consider quackery, butchery and Frankenstein medicine (often outdated, harmful, strange, bizarre, brutal, twisted, degrading or a perverted nightmare) I would avoid all of them. Unfortunately, I was deceived into having an 18 core blind biopsy. I do not believe other conventional treatments like radiotherapy are good or great choices either, just not as horrific. The choice I made was a 5-day SBRT radiotherapy. A 5-day SBRT also has numerous drawbacks and side effects, about the same as a 9-week EBRT radiotherapy. I also had no newer treatment options available to me. As I have stated above, If I could do it over again I would also consider either no PSA testing and treatment or traveling for newer treatments from a competent provider if practical and available. I am now sure I made the wrong choice by receiving conventional testing and treatment. Per multiple experts: Prostate cancer testing and treatment is often worse than the disease. I was also the victim of profit-motivated and substandard providers. 5 years later I now believe my prostate cancer testing and treatment greatly accelerated my aging (through the stress, testing, treatments and physically from the radiation and was also a financial burden costing me thousands of dollars. Per new EBRT studies my intermediate Gleason 7, 4+3 score is now considered "unfavorable" [7]. I now have about a 50% chance of treatment failure in 8 to 10 years. My previous long-term cure rate was originally quoted at 85% before my treatment started. I am also sure prostate cancer testing and treatment is mostly smoke and mirrors (lies). The man who invented the PSA test, Dr. Richard Ablin now calls it: the Great Prostate Mistake, Hoax and a Profit-Driven Public Health Disaster[1]. When asked: "How did you live so long?" A 99-year-old woman stated, "Stay away from doctors and don't take anything they prescribe for you". With exceptions, I now believe this advice to be often true.
The Book with no happy ending, for men: In my opinion. After I was diagnosed with prostate cancer my doctor gave me a book written by a female. It generally contained conventional prostate cancer testing and treatments. It had no reference about harm from a blind biopsy (infection, sepsis, ED, pain, bleeding, sometimes death, etc), Multiple crucial omissions, excluded and understated multiple side effects (suicide risk, depression, lower libido, chronic fatigue, over-treatment, multiple and bizarre side effects from ADT therapy, multiple forms of sexual dysfunction, etc, etc, etc). Also excluded were focal ablation treatments (new testing and treatments, etc.). If you read it with attentiveness this book seemed subjective, inept, callous, excluded essential information, it also had unnecessary demeaning and demoralizing content. I am not sure if this book was intended to devalue, frighten and misinform men to accept conventional testing and treatment without question? For an uninformed reader, this book may have seemed to be educational and reliable. Legalities and copyright infringement prevent me from giving the name of the book or any identifying details. Most prostate cancer booklets, on-line information and guides understate, underestimate or do not disclose all side effects or harm.
Always protect yourself: Conventional prostate cancer care is often hazardous. Do not let the sterile, friendly and professional environment of a doctor's office detour you from protecting yourself from any unnecessary life changing over tests and treatments. If you are concerned about misuse or privacy issues, refuse to fill out EPIC questioners and limit the information given to relevant information only. If you have a high PSA or prostate cancer, educate yourself. A patient should be extremely skeptical if exaggerated claims are made about minimal long-term side effects from conventional treatments or blind biopsies, exaggerated cure rates or the need for immediate treatment. If you are having a procedure or surgery, you may want to insist on no interns, trainees, students, observers, etc. Bring someone educated or astute with you to your consultations and appointments. Inquire about newer testing if you have prostate cancer. Avoid doctors that are mostly profit motivated. Do not submit to a prostate blind biopsy. Get a second or third opinion if you are being offered treatment with low-risk prostate cancer or have a short lifespan. Learn about all your treatment options, testing and side effects. Verify everything you are told. Under the HIPAA law, you are entitled to a copy of all your medical records and bills. Always ask the name of the person assisting you. Get a copy and keep a file of your test results, biopsy report, Gleason score, PSA, MRI report, treatment plan, bills, insurance payouts, etc. Carefully monitor your PSA. Expect a temporary increase (for weeks or months) in PSA after some procedures. Verify the accuracy of paperwork. If treatment is necessary talk to your doctor in advance about side effect management, chronic fatigue, ED, depression, etc. Doctors that provide treatments often have computer software to predict the outcome using test results and different treatment options. Ask to see your computer predicted cure rate outcome with your treatment options if available. This may give you some insight into your options, cure rate and also to avoid over-treatment. Always ask what is the "biochemical recurrence" (AKA rising PSA or treatment failure) rate for well beyond 5 years. 5 years is not a magic number. Get a 10-year cure estimate. For help contact a good prostate cancer support group without a conflict of interest. A wise man once told me: You need to learn to think like your doctors (nurses or other providers). What are the motives of your providers?
No national guidelines: A prostate cancer patient "bill of rights" is needed. Strict guidelines need to be created and enforced because of the extensive and documented abuses of prostate cancer patients: 1. Blind biopsies should be banned. 2. Strict guidelines for testing and treatment need to be created. 3. Full mandatory industry standard disclosure needs to be created for tests and treatment to include realistic risk factors and all side effects listed. 4. Newer testing and treatments need to be created and approved. 5. Dignity, privacy and confidentiality need to be standardized and enforced in addition to the deficient HIPAA laws. 6. Mandatory aftercare needs to be available, standardized and regulated. Screening for fatigue and depression need to be mandatory. 7. The cost of drugs needs to be regulated to end financial exploitation by drug companies. 8. Medical workers should be identifiable and be required to wear legible name tags with first, last names and job title. 9. A new standard "Ethical Code of Conduct" needs to be created and enforced to end patient exploitation and abuse. 10. Mandatory drug testing for employees with access to control substances. 11. A truthful and accurate standardized educational book or PDF needs to be created and distributed to all high PSA and prostate cancer patients. 12. Ban for-profit ADT therapy and the "chemotherapy concession". 13. A database needs to be created to track and ban dangerous or incompetent health care workers to break the cycle of abuse. 14. All health care workers need to be screened (for crime, drug abuse and mental illness) and no adolescent under 18 years old should have contact with patients or records. 15. Explicit consent needs to be given for all testes, exams and procedures for patients who are under anesthesia. 16. Strict guidelines need to created before a Foley catheter can be used because of infections, extensive abuse and over use. 17. It should be mandatory to correct significant errors in medical records, it is currently forbidden to make corrections in medical records in most states. 18. The random release of all records should be banned. Including de-identified records should be banned because records can be easily Re-identified. 19. Test results should be given to patients as soon as they are available. It is unlikely any of the above recommendations will be implemented unless prostate cancer affected a larger percent of the population or enough prominent people are affected. Patients must protect themselves as the only alternative!
Clarification: This document has angered and upset some people for various reasons. Per my experiences; some prostate cancer support group members, advocates and others are trying to spread the truth and others are attempting to suppress the truth. If you do not have a short lifespan and have metastatic, advanced, intermediate or high-risk prostate cancer you may need treatment. The intent of this document is not to imply all doctors are dishonest or to condemn all medical providers. The intent is to educate men of the consequences and dangers that may await them so they can take appropriate action and to inform patients of real-world, typical or worst-case scenarios. Also to obtain the best testing and treatments available. I created this document after I was extensively abused, exploited, lied to, provided substandard care and had my privacy and confidentiality violated. However some men are vary satisfied with the treatment they received and others are angry, depressed or suicidal. I have tried to include most scenarios a prostate cancer patient should be cautious of. Would some health care providers harm a patient for profit or by accident or some other reason? Yes, absolutely! Shockingly, for me it was well over 40% (probably 50% to 60%) that intended to do me some form of harm or provided substandard care as explained in my story. Are some other doctors and nurses exceptional? Yes! I have also had excellent doctors and nurses, however this may not protect you or me from the incompetent ones.
I have been extensively misquoted, harassed and criticized by some for creating this document and its blunt content. To ensure my privacy, confidentiality and avoid any potential reprisals, further abuse or exploitation, I will remain Anonymous.
Jim
References:
1. Hardcover book, The Great Prostate Hoax: How Big Medicine Hijacked the PSA Test and Caused a Public Health Disaster. by Richard Ablin (Inventor of the PSA test).
2. https://urologyweb.com/prostate-cancer-treatment-the-disturbing-facts/
3. World J Mens Health. 2017 Apr; 35(1): 1-13. Published 2017 Apr 26. Orgasmic Dysfunction after Radical Prostatectomy. Paolo Capogrosso.
4. Addressing Chemically Dependent Colleagues. Kathy Bettinardi-Angres, Stephanie Bologeorges. J Nurs Regulation. 2011;2(2):10-17.
5. Medscape Urology WebMD: Mortality Risk With Prostate Biopsy Raises Concern - Medscape - Jun 17, 2013.
6. British Journal of Cancer (2006) 94, 1093 - 1098 & 2006 Cancer Research UK. Anxiety and depression after prostate cancer diagnosis and treatment: 5-year follow-up.
7. Alan Katz. Original research published: 08 July 2016. Predicting Biochemical Disease-Free survival after Prostate stereotactic Body radiotherapy: risk-stratification and Patterns of Failure.
8. C. KING. doi:10.1016/j.ijrobp.2009.07.1748. SEXUAL FUNCTION AFTER STEREOTACTIC BODY RADIOTHERAPY FOR PROSTATE CANCER: RESULTS OF A PROSPECTIVE CLINICAL TRIAL.
9. L. Klotz. Curr Opin Endocrinol Diabetes Obes. 2013 Jun;20(3):204-9. Prostate cancer overdiagnosis and overtreatment.
10. Loeb, S. Eur Urol. 2014 Jun; 65(6): 1046-1055. Overdiagnosis and Overtreatment of Prostate Cancer.
11. Loeb, S. J Urol. 2013 Mar; 189(3): 867-870. Is Repeat Prostate Biopsy Associated with a Greater Risk of Hospitalization? Data from SEER-Medicare.
12. The new England journal of medicine. October 13, 2016 vol. 375 no. 15. 10-Year Outcomes after Monitoring, Surgery, or Radiotherapy for Localized Prostate Cancer.
13. BMJ 2016; 353 doi: (Published 03 May 2016) Cite this as: BMJ 2016;353:i2139. Medical error