Created January 5,2016. Revised October 3,2017
Read the sad truth about prostate cancer testing and treatment, exploitation and dangers.
Your life or your quality of life may depend on reading this document.
Prostate cancer dirty secrets, lies, exaggerations, deceptions and elder abuse.
A prostate cancer survival guide by a patient and victim.
Men, avoid the over diagnosis and unnecessary treatment of prostate cancer.
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".
In my opinion:
Read the hard facts about prostate cancer testing and treatment that no one will tell you about, even after it's too late. This is information all men over 50 should have. Also, anyone concerned about cancer in general, dangers from clinical trials, injuries and deaths from medical mistakes, exploitation, elder abuse, HIPAA laws and privacy issues should read this document. Prostate cancer patients are often elderly, over treated, misinformed and exploited for huge profits by predatory doctors. The testing, treatment and well documented excessive over treatment for profit of prostate cancer often results in devastating and unnecessary side effects and sometimes death. At times profit vs. QOL (quality of life).
Facts per some studies:
1. Multiple studies have verified more harm and deaths caused from prostate cancer testing and treatment then from prostate cancer itself.
2. Extensively documented unnecessary testing and treatment of prostate cancer for profit or poor judgment by some doctors in the USA.
3. Medical mistakes are the third cause of deaths in the USA (over 251,000 deaths a year, over one million deaths in 4 years) more then suicide, firearms and motor vehicle accidents combined.
4. About 1 man in 6 will be diagnosed with prostate cancer in his life.
5. About 233,000 new cases per year of prostate cancer.
6. 1 million dangerous prostate blind biopsies are performed per year in the USA.
7. 6.9% hospitalization within 30 days from a prostate biopsy complication.
8. About 1.3 to 3.5 deaths per 1,000 from prostate blind biopsies.
9. .2% to 1.2% deaths as a result of prostate cancer surgery.
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).
11. Low risk Gleason 3+3=6 "cancer" lacks the hallmarks of a cancer yet it is often aggressively treated.
12. Prostate cancer patients are at an increased risk for chronic fatigue, 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.
14. 75% to 90% of oncologists would refuse chemotherapy if they had cancer.
15. The National Cancer Institute says approximately 40 to 50% of men with low to moderate grade Prostate cancer will have a recurrence after treatment.
16. 62% to 75% of bankruptcies in America are because of medical bills.
Excuse the generally accurate humor and sarcasm. Its intent is to entertain and educate while reading this possibly laborious text.
Prostate cancer patients are often elderly and exploited for profit, the treatments offered has horrible side effects, and newer treatment options are either unavailable or not offered to patients or available outside the USA. 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.
$Follow the money$: If a surgeon is financially responsible for a building lease, a large staff or an oncologist is also responsible for a lease on multimillions of dollars in radiation treatment equipment, do you think they would be more or less honest about the benefits and hazards of treatment? Do you think the profit margin would compromise some doctor's ethics? Typically, what is the purpose in over testing and treating a cancer that often will not spread and the testing and treatment frequently causes lower QOL (quality of life), ED, incontinence, depression, fatigue, suicide, 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 then good. The U.S. Advisory Panel is now recommending for prostate cancer PSA testing and screening: for men 55 to 69 “letting men decide for themselves after talking with their doctors". For men over 70, no testing at all is recommended. However this may not protect men from predatory doctors exploiting them. Patients usually follow a doctor's recommendation. Do you think any regulatory agency will stop the exploitation of elderly men with a high PSA or prostate cancer or approve new treatments at the risk of financially bankrupting thousands of treatment facilities and jeopardizing thousands more jobs? Do you think any regulatory agency will set guidelines for testing and treatment at the risk of upsetting the doctors who are profiting from over treating? Some drugs and treatments for prostate cancer and ED are kept very expensive and newer or less expensive and effective drugs and treatments are seldom approved, for maximum profit. Prostate cancer patients are often elderly and exploited for profit, the treatments offered has horrible side effects, and newer treatment options are either unavailable or not offered to patients or available outside the USA. 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.
A 12,18 or 24 core blind biopsy, holey prostate! One million dangerous prostate blind biopsies are performed in the USA each year and they should be banned. Men with a high PSA tests result are often sent to an urologist for a blind biopsy. Men should be told about other options: Percent free PSA test, 4Kscore test, PCA3 urine test or a MRI, 3D color-Doppler test before receiving a blind biopsy. These tests can often or always eliminate the need for a more risky and invasive blind biopsy. Insertion of 12,18 or 24 large holes through the rectum into a gland the size of a walnut, a blind Biopsy can result in (per studies) pain, prostate infections, a risk of permanent or temporary erectile dysfunction at about 24% (Biopsies cause about 240,000 cases of ED a year), urinary problems, hospitalization from infections and sometimes even death from sepsis (About 1.3 to 3.5 deaths per 1,000 from blind biopsies). There is also debate that a biopsy may spread cancer because of needle tracking. A blind biopsy can also increase PSA reading for several weeks or months, further frightening men into an unnecessary treatment. Blind biopsies are almost never performed on other organs. One very prestigious hospital biopsy information states “Notice that your semen has a red or rust-colored tint caused by a small amount of blood in your semen". Another large prestigious hospital states “Blood, either red or reddish brown, may also be in your ejaculate." These statements are often an extreme exaggeration (mostly lies). Very often after a biopsy a man's semen will 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 some benefit to a few patients. If some very prestigious hospitals are not factual about the color of semen, what other facts are not being disclosed or misrepresented? Never submit to a blind biopsy.
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 often be unnecessary in lower risk prostate cancer patients.
Low risk cancer patients or patients with advanced age are often sent for aggressive treatment by some doctors when monitoring is usually a better option. An extreme example of overtreatment is one SBRT radiation clinical trial. Prostate cancer patients (victims) where intentionally treaded (fried) 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 36.35 Gy, 5 fractions. A large percentage of prostate cancer patients in this clinical trial had low risk prostate cancer and may have not required any treatment at all.
Clinical trials may or may not be hazardous to patients. The goal of a clinical trial is to gather 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. Often drug company's get your information from medical databases and pharmacy information to lure people into clinical trials, soliciting people with letters and postcards. This is often a HIPAA violation. If you call about a clinical trial your phone conversation may be recorded “Calls may be recorded for training and quality purposes" including your medical and personal information. 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. Patients can be harmed by a clinical trial.
Your privacy and confidentiality is just an illusion: You may have little privacy and confidentiality! Under the HIPAA law all access to your records is allegedly by a “Need to know" basis only, this is another exaggeration (lie). Prostate cancer patients are asked to fill out a series of EPIC questionnaires and other standard questioners. 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 may be able to assist his doctor, nurse, office workers or database track his progress or decline. By refusing to fill out these questioners and supplying other unnecessary information one can help insure his privacy, dignity and insure he do not unknowingly become part of a study or clinical trial or other collective survey or have his information forwarded to multiple databases. He may be told these questioners and records are “strictly confidential" (as stated in some EPIC questionnaires); this statement is misleading. Most of the time a patient has no idea who has access to medical records or why the records are being looked at. Who has access to your medical records? 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). Access may include/however not limited to non-medical employees, office workers, bookkeepers, janitors, insurance companies, temporary high school or college interns, volunteers, etc. This may also include other medical facilities, programmers, hackers, researchers, etc. Usually 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. Some major databases like SEER (Surveillance, Epidemiology and End Results) are linked to Medicare records to determine “end results" for researchers, studies, drug companies, clinical trials offers, etc. Servers, both government and privet are sharing information AKA “health surveillance". Health information may be shared and downloaded by millions of entities and servers all over the USA and the world to countries that do not have any regulations for privacy. Your prescription history can also be tracked. Records may be packaged with others and offered for sale, this does often happen on “the dark web". If a doctor, patient or insurance company is involved in a criminal or civil case, medical records may become public court or law enforcement records. Your records can be acquired by insurance companies. If a patient has radiotherapy he may have a photo taken before treatment to verify identity. All patients should get a copy and read any confidentiality disclosures statements (HIPAA statements). Financial and medical Identity theft is a growing problem, often expensive and difficult to correct. Ransomware is also a growing problem. Under the HIPAA laws you are entitled to a copy of all your medical records, however if you try to obtain a copy of extensive records as in a hospital stay you may be met with resistance. I recently went to a new optometrist for glasses and I was given a form that asked details about my heritage, including my mother's maiden name and a form for my complete medical history. Your records can also be accessed by anyone (trainees, volunteers, students, high school interns, minors and adolescent people as young as 16 years of age, etc) “for training purposes" or any other reason, all without your consent. This gives kids a chance to play doctor and nurse in a real doctor's office with real patients. A list of what a high school intern is allowed to do to patients: “learning simple medical procedures, watching surgeries, shadowing doctors (including seeing patients, possibly you), working in hospitals, interacting with patients, and more." They can also read all records about your prostate problems, your wife's hemorrhoids and your daughters yeast infections or any files for any patient, all within the HIPAA guidelines. These people do not have to be employed by the facility or have a background check. My family doctors office has summer time high school interns with full access to all records. One high school intern signed me in, took my temperature, weight, blood pressure and logged it in my file. Would you like to have a high school or college student that possibly lives in your neighborhood or attends school with your children read over your extensive family member's medical records and personal information? How much curiosity or self control does a high school or college student have? I also went to a hearing aid center in a department store to get a free hearing test and was given forms inquiring about personal information and my complete medical history. This is information I do not want filed in a department store. All patients should avoid supplying unnecessary information whenever possible. Supply relevant information only when filling out forms. In the USA identity theft is very common, growing problem and is often financial devastating. Medical forms can be a good source of information for thieves. Recently my friend with arthritis in her hips received a letter offering a clinical trial for a new medication; coincidently looking for patients with hip and knee arthritis. How did this company determine she and not her husband or other family member was a prime candidate for this new drug study without violating any HIPAA privacy laws? Numerous exceptions (loopholes) appear within the HIPAA laws regarding you privacy. Even without HIPAA privacy law violations, records can be accessed by multiple people and appear in multiple databases. Sometimes medical phone calls are recorded “Calls may be recorded for training and quality purposes". Calls about a clinical trial, calls to a large clinic toll free number, calls to drug companies and calls to insurance companies may be recorded. These conversations can include confidential or medical information. Some of the Obamacare goals sought to have everyone's medical records on servers so they could be accessed by any medical facility or doctor. HIPAA laws are deficient and often will not protect your privacy. Your privacy and confidentiality is not that secure. I believe the medical field has little regard for our privacy, especially if it is in conflict with training, research, studies, profit or other objectives. If you're a public figure, celebrity, rich or famous you may be subject to numerous people wanting to see your medical records. Also if you are known to or an acquaintance of anyone with access to your records (neighbor, co-workers spouse, etc) they would possibly (or probably) want to have a look at your medical records. On May 6,2017 Dear Abby did an article on this subject, “Snooping into medical records". You are naive if you believe otherwise or that your records are secure. The same also applies to pharmacies and your prescriptions, labs, etc.
A patient's dignity (or lack of dignity): Prostate cancer testing and treatment is stressful, degrading, demoralizing and often unnecessary. EPIC questionnaires can be counterproductive impact a patient's dignity, privacy, confidentiality, and self image. EPIC questionnaires probably have an increased potential and greater impact on patients for privacy violations because of its format, nature and personal content (potential for HIPAA privacy law violations). Patients may mistakenly believe the EPIC questionnaire is a requirement to be filled out. Also the term “strictly confidential" can be misleading and ambiguous. One patient posted he filled out and turned in his “strictly confidential" EPIC questioners only to have every female office staff member read it and ogle him. Resulting in him not filling out any more EPIC forms or any other forms and he stated that he became very uncomfortable and evasive with the entire office staff. The drawbacks of this form seem to outweigh any potential benefit for some patients. Medical tests and procedures can be degrading and embarrassing for both men and women. Many women prefer or will only see female doctors or gynecologists, about 50% to 70%. Over half of men prefer a male doctor. (Per some respected doctors: Men stay away from medical care in large numbers because of privacy and dignity. Per surveys, nurses and medical staff often laugh at and ridicule patients. Many men still avoid medical care because of embarrassment. Honest answers will often not be given if asked by a female doctor or nurse.) What percent of men will feel comfortable consulting a female doctor, nurse or office worker about his prostate problems, ED, etc or would want an invasive test or procedure performed by a female?
The most common treatment options for men with prostate cancer are radiation, Brachytherapy, surgery, cryotherapy and hormones (ADT). Sometimes chemotherapy, immunotherapy and castration (orchiectomy) are used. A combination of treatments is often used. Most or all of these treatments have long term or short term side effects. Often men are not told about all of the true risks and side effects or they are downplayed for both a blind biopsy and treatments.
LDR Brachytherapy is permanent radioactive seed implant. This treatment procedure implants about 60 to 120 radioactive seeds in the prostate, sometimes resulting in urinary problems. The patient will literally become radioactive for months and up to 2 years. The patient may set off radiation alarm at airports. He will also be required to use a condom, have no close contact with pregnant women, infants, children and young animals or pets for months or longer. Occasionally he may even eject radioactive seeds during sexual activity or urination. The patient will become like a walking Chernobyl, having radioactive scrap metal and emit radiation from his crotch. He will also be required to carry a card in his wallet stating he is radioactive. If he dies he can not be cremated for one year after treatment The videos of this procedure seem to be disturbing and bizarre. A catheter will also be required for a short time.
ADT Hormone therapy, big profit$, devastating side effects: Lupron injections is one of the most common. Men are also prescribed hormone therapy (ADT therapy), AKA chemical castration as an additional or only treatment. Hormone (ADT) therapy is sometimes over prescribed for profit, per some studies. Hormone therapy is often very expensive (Profitable for doctors if provided at the doctors office and not a pharmacy) and can have horrible, strange and devastating side effects, feminization, hot flashes, fatigue, weight gain, ED, depression, etc. His penis could shrink and his testicles can completely disappear, he may grow breasts. This treatment can have so many mind and body altering side effects that doctors will often not inform patients about all of them. One man stated that ADT therapy turned him into a menopausal woman. Men are sometimes castrated (orchiectomy) as a cancer treatment to reduce testosterone. Amnesty International calls chemical castration “inhuman". ADT therapy is often used in sex reassignment surgery, male-to-female transsexuals. 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 patients being prescribed ADT therapy! Per Wikipedia: “in patients with localized prostate cancer, confined to the prostate, ADT has demonstrated no survival advantage, and significant harm, such as impotence, diabetes and bone loss. Even so, 80% of American doctors provide ADT to patients with localized prostate cancer." Overtreatment with ADT is extremely profitable, unfortunate and avoidable.
Nerve sparing Robotic-assisted DaVinci surgery is touted as being a better treatment and having fewer side effects, this is usually an exaggeration. The nerves can not always be spared. Robotic surgery can result in a faster initial recovery. Long term risk of incontinence, fatigue, ED, depression, some men will ejaculate urine, shorter penis, etc is about the same as conventional surgery. Patients undergoing surgery are at a very small risk of developing post traumatic stress disorder (PTSD) and about a 22% chance of long term or permanent fatigue. A catheter will be required. Also .2% to 1.2% risk of deaths as a result of prostate cancer surgery or medical mistakes. Patients can have unrealistic expectations about the results and regret the surgery or any treatment option. The ED rates and other side effects are often understated to patients.
Patients should not be naive: Medical mistakes are the third cause of deaths in the USA (over one million deaths in 4 years). Medical mistakes cause more deaths then suicide, firearms and motor vehicle accidents combined. Countless other patients have been harmed by medical mistakes. If you are having surgery, biopsy or a procedure take precautions if possible. Have someone qualified or knowledgeable monitor you and your medications, etc. Doctors, nurses and technicians can be profit motivated, use obsolete procedures, be lazy, incompetent, make mistakes and be apathetic or rushed. Occasionally harm can be done or not prevented with intent. Drug abuse is often a problem with some medical workers because of easy access. Doctor's offices and clinics can see many patients in a relatively short amount of time. This may be a disadvantage to patients, empathy and quality of care can sometimes be compromised. Sometimes a nurse, medical assistant or an office staff member may be the person that overseeing much of a patient's care. I personally know of or have had contact with at least 14 nurses and other medical staff that I would consider dangerous: incompetent, dishonest, lazy, abusive, mentally disturbed, sadistic, drug abusers that work in doctor's offices, labs and hospitals. Most of these people did not have a name tag and supplied me with a first name only when asked for a name. I am now sure modern medicine protects the blameworthy and incompetent, also 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 or intentional. TV and sometimes the public seem to idolize doctors, nurses and caregivers; however the health care 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 you from the bad ones. What are the main reasons nurses get fired: 1. Prescription drug abuse (because of easy access to drugs). 2. Too many mistakes. 3. Code of conduct and privacy violations. 3. Bad attitude. 4. No proper licenses 5. Abuse of patients. 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.
A blind biopsy or treatments are often worse then the disease: Testing and treatment often resulting in Chronic/permanent fatigue, incontinence, depression, sexual dysfunction and sometimes death. Hormone therapy does have an extensive list of side effects that can be devastating for men. Biopsies and treatment are degrading, stressful and often unnecessary. Many men may not be prepared or have unrealistic expectations about the outcome, physical and psychological impact of testing and treatment.
The risk of long term chronic and permanent fatigue (that can result in depression) is almost always understated if mentioned at all too many patients. Per some studies and depending on your treatment; the risk of long term or permanent fatigue is about 25% to 60%. Radiation with Hormone therapy has a high risk of fatigue. Long term fatigue also increases the risk of clinical depression and suicide.
In my opinion: Castration, ADT hormone therapy (chemical castration), LDR Brachytherapy (radiation seed implant), radiotherapy, surgery, chemotherapy and blind biopsies are often psychically and emotionally brutal, traumatic and disturbing. These types of treatments are primitive and almost beyond belief in today's world of advanced technology. Newer treatments like, HIFU, hyperthermia, Conexus, Boron Neutron capture therapy, Gold Nanoparticles, PARP Inhibitors, Platinum, focal Ablation (only treating the cancer and not the entire prostate) and orphan drugs (dichloroacetate, etc.) should be approved and used when appropriate. Biopsies should be limited to selective MRI guided samples only; blind biopsies should never be performed. Per some studies vitamin D3 May help control PSA and prevent prostate cancer from becoming aggressive.
Lipstick on a pig: Approved advances in prostate cancer treatment mostly consisting of newer, faster and more accurate radiation treatments, robotic surgery and new drugs. These advances sound like greater strides have been made. However most of these approved advances are of limited benefit to prostate cancer patients and still have about the same amount of long term side effects. Compared to other technologies, computers, communications, electronics, aviation, etc, cancer treatment approved advances have been dismal. The National Cancer Institute wastes about 3 billion dollars a year on PSA screening that can be used for research and true cures. QOL (quality of life) issues have not been adequately addressed. Profit often outweighs QOL.
Prostate Radiotherapy (EBRT-external beam radiation therapy) for cancer treatment. New technology consists of: IMRT, SBRT, IGRT, VMAT, TrueBeam, Cyberknife, etc. This newer, faster, more accurate and easer to setup radiation equipment is of much benefit for doctors, staff and a good selling point to patient's. However as far as reducing long term side effects, only small gains have been made with the newer radiotherapy equipment. A patient should be skeptical if exaggerated claims are made about reduced long term side effects, especially fatigue and ED rates. About 25% of radiotherapy patients can expect an alarming temporary “bounce" (spike) in the PSA value after treatment. 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, 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 a be required. Radiotherapy can also occasionally result in secondary cancers and damage to “organs at risk" (organs close to the prostate). Radiation has high probability of sexual dysfunction and fatigue, just as high and sometimes higher with the newer equipment. ED rates estimated at 35% to 75% or higher, 93% at 15 years. Somet
Iowa City, Iowa