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In response to Jim’s extensive post; THANK YOU! I am glad to know that I am not alone in my opinion regarding the horrible medical system when it comes to men with prostate cancer. One area that I disagree with you on is PSA testing as I don’t think excluding that test is a one size fits all decision. In my husband (Dale’s)case, his primary care doctor had not tested his PSA levels for 8 years and told him that it was no longer considered standard protocol. Being a shy man, Dale did not question his primary doctor (Ellen Kim at Providence Medical Center in Monroe, Wa.) However, since he was urinating more frequently in the middle of the night during his last yearly physical he demanded a PSA test be done with the rest of his lab work. His PSA level was 12. Retested two weeks later and it was 13.5. He was sent to a urologist for a DRE and he ended up seeing a urologist (Dr.Chen) at Swedish Hospital in Seattle. Dr. Chen did a DRE (normal) and placed him on antibiotics for 6 weeks. His PSA after antibiotics spiked to 30. Dr. Chen recommended a Fusion Biopsy and told us we needed to have an MRI done at Seattle Radiology (which she said our insurance would not cover?) and the MRI would be used along with an ultra sound to guide a 12 needle biopsy. She failed to mention that the biopsy would be done by a second doctor that we had never even heard of. At that time I had started to do some research and read about 3D MP MRIs being done to replace needle biopsies. It was at that time I first realized that doctors only inform you and support technology that they either do at their medical facility or one of their affiliates and they only tell you about options that they think your insurance might cover. Even though their could be a life saving treatment at another medical center 2 blocks away they wouldn’t mention it. When we asked Doctor Chen for a referral to Overlake Hospital in Bellevue which is one of only two medical centers in Washington State that had this MRI technology it was like pulling teeth. The referral person at Swedish told us our insurance denied payment on the MRI. So I contacted the company that does the prior authorizations for our insurance and they said they had provided an authorization code to Swedish and they didn’t know why Swedish was telling us the MRI at Overlake hospital would not be covered. That was my first dose of total incompetence from Swedish.
Prior to performing the MRI the radiologist at Overlake needed my husbands medical records from Swedish for his MRI report findings. It took myself and a person from Overlake Radiology Scheduling 7 phone calls and after many lies from various medical staff at Swedish Dale’s medical records were finally sent to Overlake Radiology. The MRI results showed nothing and said cancer was highly unlikely. I am not sure if it was a bad radiologist or what the circumstances were but due to high PSA levels we decided to go ahead with the recommended needle biopsy. However, we decided to leave Swedish Hospital as a potential cancer diagnosis is bad enough without having to deal with unnecessary lies from the medical staff at Swedish.
We choose to see a Urologist at the University of Washington due to their affiliation with the Seattle Cancer Center Alliance which is supposed to be the #5 Cancer Center in the US and the best on the west coast. After another normal DRE and PSA test of 15 we went ahead with a 12 needle biopsy with a UW Urologist. We were charged two times for the biopsy by both the doctor and the facility and even after I explained the obvious, that Dale did not walk in and have a biopsy on his first visit ever at the UW and then again two weeks later, the billing people argued with me because that was the information entered by the doctor. End of discussion. More incompetence with UW.
The biopsy results showed cancer with the presence of peri-neural invasion (PNI). Dale was diagnosed with a Gleason score of 3+7=7 with one sample showing 4+3=7. However, the overall Gleason Score according to the pathologist was 3+4=7 which I have since been told is odd as usually they use the highest score to determine the final diagnosis. “Intermediate/High Risk” (Depending on which Dr. you talk to) Thus…the reason I am pissed that Dale had not had his PSA levels tested for 8 years. At age 60, there is a possibility that he could die from PC and we have no idea how long he has had cancer. Had his PSA levels been tested earlier there is a chance it could have been detected and he would have had better treatment choices available to him. I don’t think the answer is not to test and put your head in the sand. I think the answer is to have better treatment options and available tests to determine the location and specificity of the cancer. Is it a rabbit or a tortous? Watchful Waiting options that don’t include endless needle biopsies; Less invasive treatments such as Nano Knife approved for PC and covered by insurance. Even if focal ablation treatments only stave off PC for a couple of years it would be a huge relief for men who still work to be able to avoid wearing a freaken diper. Especially, if they work outside or drive a truck. Heck..even in an office setting nobody wants to have a puffy ass and smell like PEE!
Dale was referred to a Urologist/Surgeon with the UW who f course recommended surgery. When I asked the surgeon what PNI meant, he said funny you should ask. I was just in a meeting with my colleagues and we are all in agreement that the pathologist shouldn’t include those PNI findings on the report. I have now come to understand this is because regardless of the PNI findings a surgeon (at least at SCCA)would continue to do surgery to remove the prostate regardless that the PC may have spread. Again..after doing more research I find out that with PNI there is a higher risk for the cancer to spread outside the prostate. So…why wouldn’t the surgeon want to ensure that the PC was localized prior to doing surgery. After all, if it spread to lymph nodes nearby, maybe they could be removed with the prostate. Apparently, this surgeon was not concerned. Although he did say that he would not be able to do nerve sparing surgery and he would take a biopsy of the lymph nodes on the side with the PNI to check for cancer after the surgery. Hmmm…this made my attenas really stand up. Next appointment – UW Medical Oncologist.
The visit with the Med. Oncologist at the UW was a complete waste of time. Other than by this time I had come to realize how the driving force behind treatment and care for PC is MONEY! It has nothing to do with the well being of the men whose lives are severely impacted by medical doctors and or board of directors at these medical centers who provide medical advice based on the need to pay for their robotic surgical and/or radiation equipment. The Medical Oncologist did admit to me that it is true that doctors only advise treatment done at the medical centers they are affiliated with and that they assume your insurance will cover…Insurance coverage or not, shouldn’t it be our decision if we want to pay out of pocket???
I asked the Medical Oncologist about some PET/CT Scans that we had heard about from a friend of a friend that will identify PC anywhere in the body. She of course only new of one such scan (Axumin) which she didn’t mention was done at the UW. She said that it sometimes had false positives although if it showed nothing outside of the prostate it was fairly reliable. However, she said it was not reliable for initial PC treatment although it was totally appropriate to determine treatment for recurring PC. (WTF…I DON’T GET IT)
I now understand that their is a great desire in the Medical community to reserve the best technology whether it is diagnosis or treatment for recurring PC after a man has already undergone surgery and/or radiation. Could it be that the surgeons want their money, the radiologist want their money and the medical facilities want to pay for their equipment??
Next appointment was with a Medical Oncologist from Seattle Alternative Cancer Treatment Center. This doctor seemed to tell Dale exactly what he thought he wanted to hear. Watchful waiting, yes it was an option, that is along with Hormone therapy (which he totally down played as far as side affects) I asked if watchful waiting was really an option especially with the presence of PNI. He didn’t really respond to me and I felt as though he wasn’t thrilled with all my questions. However, he was open to referring Dale for an Auxumin scan at Swedish Hospital. Our insurance approved the scan and Dale was ready to go when we received a call from Swedish that they would not perform the scan for him because Auxumin only approves the scan for (you guessed it) recurring PC. During our next visit with this Med. Oncologist again…Dale mentioned watchful waiting. I think he is hoping the PC will magically disappear (I hope he is right) However, the doctor once again says yes to watchful waiting along with hormone therapy and then casually mentions followed by radiation and hormone therapy. Again, I question the advice of watchful waiting with the presence of PNI. This time the Dr. looks at me and says “I don’t know what PNI is” and starts to google it. I was speechless at the time and even at this time…I have no words.
Next appointment was with a radiologist from SCCA again, nothing new at that appointment other than when I asked him if it would be helpful to him as a radiologist if he knew for certain that the PC was localized and he admitted that yes it would. I then asked WHY aren’t there any scans available to determine the location of PC prior to initial PC treatment. He said that because statistically only 5-10% of men in Dale’s situation have metastasized PC scans are not necessary. I said if a person is part of the 5-10% it would certainly make a difference. He did not disagree and he said that he had also never had a patient who had had been diagnosed with PC via a PSA test say that they wish they had never had the PSA test.
Tomorrow we have an appointment with Seattle Proton Therapy. One more opinion even though the thought of any radiation makes me want to throw up.
In one week my husband is traveling to UCLA to have a PSMA Pet/CT scan and also has appointments with two doctors to review the results of the scan and get their opinion on treatment options. The scan will cost $2700 out of pocket and including airfare and hotel the total cost will be $6500-$7000. Ouch.
If Dale is a candidate he would really like to pursue the Nano Knife procedure which was invented by Dr. Gary Onik who practices in Florida. We have spoken twice to Dr. Onik over the phone (very nice man). He doesn’t take insurance for his cost which is $21,500. This procedure would require two trips to Florida, one for a 3D Mapping Biopsy and a second trip for the procedure. I am told that the cost associated with both medical facilities involved are billable to insurance. However, I don’t even know the names of the facilities at this time or if they are covered by our insurance, especially since they are out of state. So…although, I will totally support my husband on his choices going forward, I am very nervous as if Nano Knife is an option it is going to be a very costly treatment with an uncertain outcome at a price that will definitely impact our retirement plans.
After all the research and doctor appointments the loudest message that has come across loud and clear to us is that you must be your own advocate or have a loved one act as your advocate because even though you may think the main stream medical community cares about you…bottom line is they don’t! It is clearly 100% all about the money! The good news is that I have no problem telling these poor excuses for human beings who are so full of themselves how horribly pathetic they are to their face and even though my husband is mortified most of the time and I know these egotistical doctors could care less about my opinion, it makes me feel better.
If there is anyone out there with any experience and or advice related to the Nano Knife procedure or any other ablation type treatment options for PC please respond to my posted comment.
Created January 5, 2016. Revised July 26, 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 lies, exaggerations, deceptions, elder abuse and dirty secrets.
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 dangers 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.
11. Black men are at an increased risk of prostate cancer.
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 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?
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. 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. 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 40 to 100 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. The videos of this procedure seem to be disturbing and bizarre. A catheter will also be required for a short time. However, allegedly LDR Brachytherapy seems to have less sexual side effects than some of the other treatments available.
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, 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. 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, brachytherapy, a 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 12 nurses and other medical staff that I would consider dangerous: incompetent, dishonest, lazy, abusive, mentally disturbed, drug abusers that work in doctor’s offices and hospitals. Most of there 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: 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, Boron Neutron capture therapy, PARP Inhibitors, Platinum, focal Ablation (only treating the cancer and not the entire prostate) and orphan drugs should be approved and used when appropriate. Biopsies should be limited to selective MRI guided samples only; blind biopsies should never be performed.
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. ED rates estimated at 35% to 75% or higher, 93% at 15 years. Sometimes radiation can also cause bowel and urinary problems. Per some studies radiotherapy causes moderate-to-severe gastrointestinal effects in 17%. 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, CT scan and MRI 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.
Prostate radiotherapy (EBRT) can result in a 5% to 30% temporary or permanent drop in testosterone levels, excluding hormone therapy. This drop is determined by the testicular radiation dose (treatment equipment and planning). A below normal drop in testosterone can result in fatigue, depression, sexual dysfunction and other symptoms. Always ask for a printout of testicle dose and constraints before and after prostate EBRT to insure your testicles are not over radiated, also dose include the CT scan exposures.
It seems all of the best treatments for prostate cancer have not been approved and most are only available outside the USA. Treatment options outside the country or under development are HIFU, Laser, Hyperthermia, Boron Neutron capture therapy and orphan drugs, just to name some. Focal Laser Ablation is a good option with fewer side effects however it is not widely available in the USA and sometimes not practical.
Chemotherapy can be extremely toxic and sometimes deadly: Any cancer patient (man or woman) who are being offered chemotherapy should be particularly cautious. Without genomic testing or proof of the effectiveness of the specific drug being used on the exact cancer type being treated, chemotherapy can often be more toxic to the patient then 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 quantity 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 drug. What is the motive for some doctors to perform Genomic testing and giving a patient a different and more effective treatment at an unknown or no profit versus a guaranteed profit with a probable worthless or harmful treatment? This is a well documented and common practice. 75% to 90% of oncologists would refuse chemotherapy if they had cancer. Chemotherapy fails upwards of 93 and 98% percent of the time depending on which study you look at. 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). Many or most chemo drugs are considered a biohazard.
Often few good choices exist for treatment. 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. Patients can sometimes be mislead about the expected side effects and results of the treatment being offered. The risk of chronic fatigue and depression is often not disclosed.
Long term care consists of regular PSA testing for years. Long term care for side effects is often lacking or exploitive or ineffective. Often complaints of side effects are disregarded by nurses, doctors and sometimes referred out to other doctors. The patient is sometimes left to figure out what to do about his side effects with the resources available to him. Long term side effects often consist of fatigue, bowel or urinary problems, sexual dysfunction, depression and other symptoms. Patients with complaints of chronic fatigue are often told to exercise, get plenty of sleep, pace your self 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. Prostate cancer treatment often results in fatigue, depression, isolation and sometimes suicide. Billions of dollars are profited from ED drug and other ED products, catheters, pads and diapers, drugs for depression or pain or insomnia or incontinence, additional treatments and surgeries for side effects. Also treatments for the multiple and bizarre side effects from hormone ADT therapy (chemical castration) is sometimes required.
Men, ageing, exploitation and elder abuse: If any man lives long enough it is very likely he will have a prostate problem, low testosterones or some form of sexual dysfunction. In my opinion modern medicine often has 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 dose not seems to be of great concern! As defined by some or all state laws, exploitation of elderly men by overprescribing treatment for profit is a crime or an offence of various guidelines and regulations. It is extremely unlikely any doctor will ever be prosecuted or have a medical license suspended for this common and extensively documented abuse or crime. It is well documented that all forms abuse do occur to the elderly and disabled in nursing homes and other facilities including, neglect, theft, starvation, torture, harassment, sexual assault, etc. 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 personally 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) repeatedly stolen and replaced by her family including the sheets off of her bed, even after the sheets where marked with her name using a larger permanent marker pen.
Depression in prostate cancer patients is common, about 22% at 5 years (per some studies) and for advanced prostate cancer patient’s depression is even higher. Prostate cancer patients are at an increased risk of suicide.
ED risk, no bathtub included: Almost all prostate cancer treatments usually result a high percentage of erectile dysfunction. Loss of libido estimated at about 45%. Excluding hormone therapy, lower libido is almost never disclosed as a treatment side effect and sometimes it is completely denied as a problem. Blind biopsies can often cause temporary or permanent ED. Often claims of prompt effective treatment for ED or other side effects if they occur after treatment are often misleading. Statistics for ED percentages from treatment are usually quoted after treatment with Viagra, Muse or other ED treatments, therefore most statistics are very misleading. ED rated at 5 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 $10 to $45 per 1 pill or dose. At these prices Lilly could consider including a free bathtub featured in its advertisements for Cialis. The cost of a 30 day supply of Cialis is usually well over $320 and the cost of an inexpensive bathtub is about $200. Generic PDE5I ED drugs in Canada and other parts of the world sell for about $0.50 to $2 a pill. Many insurance companies will not pay for ED drugs or treatment. Less expensive generic drugs are usually unavailable in the US. Viagra should have already become available in a generic (in the USA) form for about $1 a pill. This is further exploitation by the drug companies of men in general. Men are also exploited by counterfeit mail order ED drug sales. ED drugs are not always effective and may have side effects. ED treatments can also be embarrassing, not offered, not practical, painful, expensive/not covered by insurance. Men will often not seek treatment because or these reasons.
The numbers game, you loose. More exaggerations and lies. 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 3 years, over 65 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. Obviously, a man is more likely to refuse treatment at a 75% ED rate verses a 35% ED rate. Some side effects may not be disclosed at all. If side effects (low libido, chronic fatigue, depression, increased suicide risk, etc) are not disclosed, no percentages will usually need to be quoted. Results are often worse for a surgery option, the main difference in ED results between surgery and radiotherapy is; with surgery ED will start out bad and may or may not get better with time, however with radiotherapy ED will get worse over time. With both treatments together or with ADT hormones also you’re in real trouble with ED percentages. Cure rates are often quoted at the 5 years mark for most treatments. 5 years is not a magic number, anyone can have a treatment failure before or after 5 years. A cure rate for a treatment at 5 years may be quoted at 85%; however the cure rate at 7 to 10 years may be only 70% and 50%. The 85% at 5 year rate was quoted to me. I was never told about my 50% at 10 year cure rate. 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 radiation oncologist for a 10-year cure Rate. If the physician is unable to provide one, consider finding another doctor. Studies and clinical trials results, 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. ED rates for radiotherapy are usually quoted at under 1 or 2 years and for surgery over 1 or 2 year to give the appearance of a more positive result. I have read and have been given some extremely exaggerated claims (mostly lies) concerning cure rated, side effects, etc.
In conclusion: Prostate cancer patients are sometimes elderly and exploited for profit (per documented studies). A blind biopsy is unsafe and newer test methods should be used. The treatments offered have horrible side effects. Some doctors are treating patients with low risk cancer or advanced age when monitoring is often a better option. Patients with low risk cancer or advanced age should often be offered “watchful waiting” or “active surveillance” instead of treatment. Aftercare for long term side effects is frequently ineffective, expensive, not offered, degrading or nonexistent. Prostate cancer patients are seldom told about chronic fatigue and the true risk of side effects are usually understated. Modern medicine often fails and victimizes prostate cancer patients.
If a patient has intermediate or high risk prostate cancer and dose not have advanced age he may need treatment. He should consider genomic testing and look into other advanced 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. If laser or other advanced treatments are not available a 5 day SBRT radiation treatment may be considered (In my opinion SBRT could be the least worst of the bad choices, still a poor option). SBRT seems to be fast, least invasive or traumatic. ED and fatigue is still a high long term risk. Radiation with hormone therapy has a higher risk of ED and long term fatigue. However, I now believe conventional prostate cancer testing and treatment is a mistake in most men.
The short version of my story: I was referred to an urologist by my family doctor after a high PSA test. 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 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 high because of drug abuse being common among nurses (the easy access to drugs). I was diagnosed with prostate cancer by Dr. “A”. I refused his surgery and hormone therapy recommendation because of the eminent side effects and his unprofessional 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 a full payment. When I arrived in his office the waiting room was empty. He also had a large staff. Dr. “T” used older conventional technology, offered me overtreatment, hormone therapy, unnecessary procedures and testes. One week after my consultation with Dr. “T” I received an $850 bill for the consultation, in conflict with what was agreed upon with his office manager. After a recommendation from a friend, I called clinic “O” and met with the nurse. She offered me treatments with a verbal guarantee of “no side effects from the radiation”. However this nurse could not answer any of my basic questions, lacked any credibility and sounded like an unscrupulous used car salesmen. Most of these office visits caused me multiple problems with offices 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, PSA, biopsy report, etc. Having no advance 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 2 hours to complete my MRI. 2 days later after receiving a copy of my MRI report, I examined the MRI report; it had my name and some other patient history information. I wasted 2 more days verifying it was the correct MRI of me and not some other prostate patient MRI before my treatment could start. 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 mothers later and some other short term side effects. At this time I am doing okay, however 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 then a science. I have wasted hundreds of hours and thousands of dollars. I feel modern medicine has 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. I was never offered Genomic testing. I also believe I should have had no PSA testing or treatment. If I could do it over again, I would also consider no PSA testing and treatment or traveling for advanced treatments from a competent provider if practical and available. I believe if I did take the two doctors recommendations and received unnecessary hormone therapy in addition to the radiotherapy my quality of life (QOL) would have been severely impacted for years or permanently and could possibly have resulting in my early death. I did seem to have a lot of bad luck in picking providers or is this just the new standard in medical care?
“Do no harm”, unless you can make a lot of money and get away with it: I was harmed physically and verbally by Dr. “A” 18 core blind biopsy and verbally abused by his 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 “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. A few of the 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 health care 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 health care workers not acting in an ethical manner. To me, it seems that this prostate cancer nightmare maze was intended for maximum physical, psychological, financial harm and to be of questionable benefit and maximum profit for doctors. My prostate cancer experience has been one of the worst events that has happened to me in my lifetime. Also seeking testing and treatment is one of the biggest mistakes I have ever made. I specifically blame modern medicine for not protecting patients from predatory doctors, substandard technology and a lack of regulations that would protect patients. I would have been much 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 and privacy, and probably received better advice. I could have received a nice amulet or a good luck charm to protect against sorcery or magic (PSA testing, blind biopsies and treatment) and evil medicine men (predatory doctors).
My treatment choice: In my opinion, I feel LDR Brachytherapy and hormone therapy (AKA chemical castration) seemed to be completely degrading, disturbing and bizarre. Hormone therapy would not have been an effective treatment for me. Surgery and Brachytherapy are to invasive. Surgery has an imminent danger of incontinence and ED. 9 week EBRT radiotherapy was just too long and laborious. Because castration (orchiectomy), ADT hormone therapy (chemical castration), Chemotherapy, LDR Brachytherapy and blind biopsies are what I consider “Frankenstein medicine” (Harmful, strange, bizarre, brutal, twisted, degrading or a perverted nightmare) I would avoid all of them. Unfortunately, I was deceived and misguided into having a 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 advanced 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 advanced treatments from a competent provider if practical and available. I am now sure I made the wrong choice by receiving conventional testing and treatment. With prostate cancer, the testing or treatment is often worse then the disease. I am not implying anyone should make the same choices as I did. I am only giving the motives for my decisions. I was also the victim of profit motivated and substandard providers. 3 years later I now believe my prostate cancer testing and treatment greatly accelerated my ageing (through the stress, testing, treatments and physically from the radiation and was also a financial burden). Per a new SBRT studies my 4+3 Gleason score is considered “unfavorable”. I now have about a 50% chance of a 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”. 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 some exceptions, I now believe this advice to be mostly true.
Always protect yourself: It should not be up to a patient to protect himself or herself from harm from doctors, however the new or common standard in medical care seems to be substandard. Do not let the sterile, friendly and professional environment of a doctor’s office detour you from protecting yourself from overtreatment or any unnecessary life changing 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. Also exaggerated cure rates or the need for immediate treatment. Bring someone educated or astute with you to your consultations and appointments. Insist on Genomic or advanced 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. Learn about all your treatment options, testing and side effects. Verify everything you are told. Under the HIPAA law you are entitle to a copy of all your medical records and bills. Always ask the name of the person assisting you. If they refuse the request for a name leave immediately (you may or may not be in extreme danger). Be very cautious if you are ever refused a copy of your records; demand a copy of your records and a reason for any denial and seek other advice. 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, 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 to your options, cure rate and also to avoid overtreatment. 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. 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 and nurses (or other providers)”. What are the motives of your providers, place them in order that you observe at your doctors office: to profit, to cure, to get high on the backroom drug supply, to do less work, to take an extra long lunch or get off work early, to help people, to cover up their incompetents, etc? This exercise may give you some insight into the care you may receive.
A medical holocaust: Multiple studies have verified more deaths caused from prostate cancer testing and treatment then from prostate cancer itself. Medical mistakes are the third leading cause of deaths in the USA, over 251,000 deaths a year or over one million four thousand (1,004,000) deaths in 4 years. More then suicide, firearms and motor vehicle accidents combined. These statistics do not include many more people that have had their lives destroyed or shortened by modern medicine or a reduction in QOL (quality of life). Per the FDA, 100,000 deaths per year (one million people in 10 years) from prescription drugs.
Strict guidelines for cancer testing and treatment 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 standards and gridlines for testing and treatment need to be created. 3. Full mandatory industry standard disclosure forms need to be created for tests and treatment to include realistic risk factor disclosure. 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 HIPAA laws. 6. Aftercare needs to be available, standardized and regulated. 7. The cost for drugs needs to be regulated to end financial exploitation by drug companies. 8. Medical workers should be identifiable and be required to wear 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. Genomic or genetic testing should be required before any patient is sent for treatment, to avoid overtreatment and insure the correct treatment. 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 “chemotherapy concession”. 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. Prostate cancer patients must protect themselves as the only alternative!
Clarification: This text may probably anger and upset some people for various reasons. 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. I have also 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! We just don’t know who or what percent would. Shockingly, for me it was will 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 I from the bad ones. Differences in opinion, variations in semantics do not invalidate this document or its intent. The information in this document is a sum of my experience, other patient’s experiences and hundreds of videos, documents, books, conversations, clinical trial, peer reviews, blogs, studies, articles, etc.
Recommended reading. Investigate for yourself:
1. Hardcover book, The Great Prostate Hoax: How Big Medicine Hijacked the PSA Test and Caused a Public Health Disaster. by Richard J. Ablin (Inventor of the PSA test).
2. Internet search or Google: prostate cancer overtreatment or scam or hoax, useless PSA, Prostate biopsy sepsis or dangers. Medical mistakes, etc.
Often prostate cancer testing and treatment is harmful and a big scam for profit! The evidence is overwhelming.
Disclaimer: I have no conflict of interest. I do not represent any support group or other 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.
Anyone may copy, email or distribute parts of or this entire document without changing or modifying it.
I have been extensively criticized by some for creating this document and its blunt content. In order to insure my privacy and avoid any potential reprisals, further abuse or exploitation, I will remain Anonymous.
I recently had a few high PSA scores of 9, 11, 10…although historically over the last 20 years my scores have been around 5-7….I never had scores below 3…I had 2 biopsies in the early and mid 90s….
I got an endorectal MRI two weeks ago which came back normal…..so I’m now trying to figure out what’s next? Do I need a biopsy? Change my diet? wait 6 months for more PSA tests?
I was diagnosed with prostate cancer in july 2014 and really just beginning this journey myself. Gleason score 6 (3+3)I am scheduled for a PET scan this next week. I am young at just 46 with relatively low PSA levels at 4.35 but they cont to rise. I have had a number of symptoms including reduced flow, urgency, and some pain. Thanks for your comments on your journey
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