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Examining Medicare Coverage Disparities Between States

Ruzanna Harutyunyan's picture

As part of its occasional series "The Evidence Gap," the New York Times on Wednesday examined how Medicare coverage of certain treatments varies by location because CMS leaves "many reimbursement decisions to the discretion of 15 regional contractors around the country." According to the Times, coverage disparities between states have existed since 1965 when "Congress allowed for regional autonomy in reimbursements" after some physicians and lawmakers "argued that federal meddling in medical decisions would be tantamount to 'socialized medicine.'"

Medicare routinely pays most claims, but "questions frequently arise when it comes to newer treatment and technologies," the Times reports. To date, "Medicare has resolved only about 300 such questions with blanket national coverage rulings," while "thousands of other coverage policies have been -- and continue to be -- decided region by region," according to the Times. The Times reports that "some experts argue that the regional system is more efficient than having the federal government dictate national coverage in every case." However, Steven Pearson, president of the Institute for Clinical and Economic Review, said, "Most policymakers think that, in general, we would want to do more national coverage decisions, partly because there's a concern that the evidence review in most local regions isn't very good."

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Medicare officials say regional contractors, which generally are units of private insurance companies, "have no financial motive to withhold coverage, because the companies receive the same payment from the government regardless of what treatments are covered," the Times reports. Steve Phurrough, Medicare's coverage director in Washington, D.C., said, "Our guidance to them is that if there's no evidence it works, they shouldn't pay for it."

According to the Times, "It remains to be seen" whether President-elect Barack Obama will seek changes to the system. Pearson said, "It would be consistent with your archetype of what a Democratic administration would start to consider as one of its policy options -- to someday address the inconsistency."

The article highlighted the coverage disparities between states for CyberKnife, a "new but fast-growing radiation treatment for prostate cancer" that is covered under Medicare in 33 states (Saul, New York Times, 12/17).

Reprinted with permission from kaisernetwork.org. You can view the entire Kaiser Daily Health Policy Report, search the archives, and sign up for email delivery at kaisernetwork.org/email . The Kaiser Daily Health Policy Report is published for kaisernetwork.org, a free service of The Henry J. Kaiser Family Foundation. © 2007 Advisory Board Company and Kaiser Family Foundation. All rights reserved.



Hi I was diagnosed with prostate cancer (PCa) in Aug. of 2007. My PSA was 4.0 ng/ml, a biopsy revealed a stage T1c adenocarcinoma involving the right mid to right apex with a Gleason score of 3+3; in 3 of 12 cores. I discussed all treatment options with my family doctor(referred me to local surgeon and Radiation oncologist), I referred myself to doctors at Stanford, surgeons and radiation Oncologists. I reviewed all options(Proton, IMRT various surgery options, ADT, and Cyro) with my wife. Treatment recovery time was an important consideration as a father of a nine year old son, small business owner. I selected SBRT/CyberKnife treatment(as a patient in a clinical trail at Stanford) option for prostate cancer at Stanford. My insurance company denied my treatment request. I spent 7 months researching the CyberKnife in my insurance fight. It was covered by CBS [url]http://cbs5.com/investigates/CyberKnife.blue.shield.2.716740.html[/url] I provided the state of CA hundreds of pages of literature and won the state appeal which forced the insurer to pay. The insurer added SBRT/CyberKnife coverage 2 months later including some of my studies in the rational for covering SBRT/CyberKnife for PCa. It is now almost 8 months post CyberKnife treatment. I am 110% of pre-treatment base line for all related functions. The plus 10% is from improved urinations. Before treatment I would get up 3-4 times a night now I typically get up once. My PSA at the six month follow up was 1.09 ng/ml. SBRT/CyberKnife has treated my prostate cancer and has improved my quality of life. I am an advocate for prostate cancer patients and am a founder of ZERO The Project to End Prostate cancer. HHS/CMS has failed to implement the MMA fo 2003 with Medicare coverage inequity for prostate cancer patients. The NY Times (link below) has published an article covering this very issue. I have copied my testimony given to CMS and Palmetto on Nov. 18, 2008 as well as written testimony in response to that meeting. New York Times 12-17-2008 about Medicare coverage of prostate cancer link follows: http://www.nytimes.com/2008/12/17/health/policy/17knife.html?pagewanted=1&_r=1&em “Official Testimony of Fred Kinder, Patient On SBRT Treatment of Cancer of the Prostate Palmetto GBA/Medicare Open Draft LCD meeting November 18, 2008 Good morning Palmetto GBA administrators, doctors and other interested parties. Thank you for allowing me to discuss Medicare coverage of SBRT/CyberKnife for treating prostate cancer. My name is Fred Kinder and I am a small business owner. I am testifying on behalf of myself as an interested party, a prostate cancer patient treated with the CyberKnife and a prostate cancer advocate. I am also a founder of ZERO the Project to End Prostate Cancer. I was diagnosed with prostate cancer (PCa) in Aug. of 2007. My PSA was 4.0 ng/ml, a transrectal ultrasound-guided biopsy revealed a stage T1c adenocarcinoma involving the right mid to right apex with a Gleason score of 3+3; in 3 of 12 cores. I discussed all treatment options with my family doctor, doctors at Stanford, Surgeons and Radiation Oncologists. I reviewed all options with my wife. As a father of a nine year old son, Business owner, treatment recovery time was an important consideration. I have a clogged artery which made the risk of surgery higher than I was willing to consider. I selected SBRT/CyberKnife treatment option for prostate cancer at Stanford. Their clinical trial data, started Dec. 2003, was very encouraging with ZERO biological failures and minimal side effects (my research suggested the CyberKnife is at least as effective as IMRT). My CyberKnife treatment was five days of one hour sessions with no recovery time (IMRT is five days per week for eight weeks). I was advised of and understand the long term risk of radiation side effects and felt the advantages of SBRT/CyberKnife treatment far out weighted the long term risk. I completed CyberKnife treatment (May 7, 2008) by Dr. Christopher King. Fourteen days post CK treatment there were minimal side effects. I continued to work every day during and after treatment. It is now over six months post CyberKnife treatment. I am 110% of pretreatment base line for all related functions. The plus 10% is from improved urinations. Before treatment I would get up 3-4 times a night now I typically get up once. My PSA at the six month follow up was 1.09 ng/ml. SBRT/CyberKnife has treated my prostate cancer and has improved my quality of life. The key messages I hope to impart to you today are: 1. The previous Medicare contractor in California, NHIC, provided coverage for SBRT/CyberKnife treatment for prostate cancer. 2. SBRT/CyberKnife treatment for prostate cancer is consistent with the Presidents statement from his press conference announcing the MMA of 2003. With this law, we're giving older Americans better choices and more control over their health care, so they can receive the modern medical care they deserve. 3. SBRT/CyberKnife treatment for prostate cancer is consistent with Mark B. McClellan, M.D. PhD Administrator. “Our nation has made a promise, a solemn promise to America's seniors. We have pledged to help our citizens find affordable medical care in the later years of life.” 4. As outlined in the CMS Statement of Work for the Palmetto Medicare Jurisdiction (J1), and on Palmettos Website: The MAC shall select the least restrictive Local Coverage Determination (LCD) from the existing LCDs on a single topic when consolidating LCDs. CMS has identified that there may be instances where the decision to implement "no policy" would meet the definition of the "least restrictive LCD". 5. There are no prostate cancer treatment options without serious risk of permanent side effects and biological failure. 6. The patient in consultation with his doctor(s) must decide what treatments are appropriate for their unique circumstance. a. Some patients live in rural areas with limited or no local treatment centers. b. Some patients have medical conditions that make surgery a high risk. c. Some patients have limited mobility making treatment very difficult. d. Some patients continue to work full time and this trend is increasing. Making treatment recovery and time away from work an important factor. e. Some patients have limited financial resources that limit treatment options due to cost of travel, food and lodging. 7. The majority of Medicare Contractors include SBRT/CyberKnife treatment for prostate cancer. 8. Blue Shield of California the largest insurer in the state, in July of 2008, added SBRT/CyberKnife to their policy for treatment of prostate cancer. All of the above support Medicare coverage of SBRT/CyberKnife treatment for cancer of the prostate. Please consider the fundamental right of patients to make treatment decisions for themselves in consultation with their doctors and families, and for the patients well being and overall quality of life. I have no financial interest in Accuray Inc., Stanford University Medical Center or any other medical provider. Thank you for this opportunity to appear before you today.” END Additional Comments by Fred Kinder, Patient, and a Founder of ZERO, The Project to End Prostate Cancer On SBRT Treatment of Cancer of the Prostate Palmetto GBA/Medicare Open Draft LCD meeting, November 18, 2008 Deep concerns about the process Thank you for the opportunity to speak at the recent open meeting held in Los Angeles on November 18th. While I appreciated the opportunity, I would like to state for the public record that I was very disappointed with the failure to provide adequate seating for the registered attendees. Standing room only for physicians and patients who traveled hundreds of miles to provide expert testimony was unacceptable. Registration for the meeting was required[1], but unregistered representatives from drug companies, with no interest in the policies on the agenda, were allowed to sit at the conference table. By contrast, most registered attendees who came to give testimony or make clinical presentations had to stand in the conference room and adjacent rooms, where it was difficult to hear what was being discussed. No audio-visual aid was available, so we could not see charts and other evidence. Since presentations were solicited in advance, it is hard to explain this as poor planning; it was certainly a formidable deterrent to those who wanted to speak. This illustrates Palmetto’s lack of consideration and respect for Doctors and patients, and indeed for the reconsideration process that CMS has mandated. Given this lack of courtesy and the way in which I and others were treated when we attempted to ask questions during the meeting, it is hard to avoid the conclusion that Palmetto is simply going through the motions of “reconsideration”, and that its mind is already made up. I hope that events prove me wrong, but I am deeply concerned. While I also appreciate Palmetto’s stated concern “to save money” as the reason for the chosen locale, this statement seems disingenuous as the savings to Medicare for one patient to be treated with SBRT (vs. a course of IMRT treatment in the physician office), would have paid for a professional conference room and hotel rooms for all attendees. The meeting was held at PCRI, an organization whose website advertises the benefits of IMRT and is conspicuously silent on SBRT. The Palmetto Medical Director is listed as a board member of PCRI. I leave it to others better qualified than I to consider whether this raises issues of ethics or of conflict of interest. Request: Palmetto include SBRT as a treatment option for prostate cancer. Doctor Lurvey stated at this LCD meeting that he did not care what dose was delivered by IMRT, as that was up to the patients’ doctor.2 While I agree that patients and their doctors should make the treatment choice, increasing the dose of IMRT without clinical studies to verify patient safety translates into Medicare paying for investigational IMRT treatments. IMRT is considered investigational and no better than 3D-RT. As stated by the California Technology Assessment Forum (CTAF)[20]: “IMRT for prostate cancer was an agenda item at two prior CTAF meetings where discussion focused on a technology assessment that concluded IMRT for prostate cancer was investigational. The investigational status was based on the lack of evidence from controlled trials proving that IMRT provided any incremental benefit over the conventional 3D conformal radiation therapy (3D-CRT). However, advocates of IMRT pointed out that IMRT should not be considered a new form of radiation therapy subject to distinct technology assessment. Furthermore, advocates pointed out that dose planning studies of IMRT documenting reduced radiation to normal tissues were an acceptable surrogate outcome.” When a patient is treated by IMRT the treatment center submits a code for payment. The dose received by the patient defined varies from treatment center to treatment center. Based on the success of the SBRT, using the CyberKnife, and HDR Brachytherapy for treating prostate cancer with a higher dose of ionizing radiation, IMRT centers are increasing their doses. There have been no randomized trials to define what dose is the most effective and the long term risk, or side effects. For the treatment of prostate cancer, no one therapy has been proven to be more safe or effective than any other (for example, look at the government’s own agency AHRQ’s February 2008 report on prostate cancer alternatives3). Therefore, each patient in consultation with their physician should be allowed to make the choice of treatment that is best for them that weighs effectiveness and adverse events (such as sexual dysfunction, and urinary and bowel injury). Despite the lack of any definitive or conclusive evidence which demonstrates the superiority of one therapy over another, it is documented in the literature that treatment of localized cancer of the prostate by HDR Brachytherapy and SBRT have cure rates as good as or better than IMRT, 3D-RT, Proton Therapy and Surgery. At one, two, three and four years, the CyberKnife at its worst, is no worse than IMRT and Proton therapy which ASTRO advertises on their website for treating prostate cancer.4-17 Prostate cancer is the number two cancer of men. There is no doubt that millions of dollars are at stake. Unfortunately, there seems to be a misconception that providing SBRT as an option for the treatment of prostate cancer is somehow financially driven. It’s actually the other way around – IMRT18 is far more lucrative a business than SBRT. Look at the facts: 1. The doctor receives less pay for 4-5 SRS/SBRT visits vs. 40 IMRT visits. 2. Medicare pays far more for IMRT in a physician office setting, which is where roughly one third of IMRT procedures are performed. Even in the hospital outpatient setting, where Medicare currently reimburses about the same for IMRT and SBRT, Medicare will pay several thousand dollars more for IMRT in 2009. 3. The patient cost of treatment (deductible/copay), transportation, food and lodging is much less for SBRT than IMRT. 4. Proton Therapy is the most expensive of all treatments “and shows no benefit over other forms of radiation”.19 5. Blue Shield of California, the largest insurer in the state of California, policy covers CyberKnife for treatment of prostate cancer (attached). In its October 31, 2008 Report titled “Final CMS Rules Look Positive For Radiation Oncology, Neutral for Others” Oppenheimer reported: Radiation Oncology. There are roughly 30 commonly used codes. Most important is that the key IMRT code (77418) will be up 18% y/y for HOPPS (and up 13% from proposed), as IGRT, which was incorrectly bundled in '08 with no adjustment, is now finally being reflected in payments. So total IMRT+IGRT goes from $403 in CY07 to $348 in CY08 to $411 in CY09. For PFS, 77418 is down 14% y/y. Most other IMRT-related codes are up double digits. By contrast, Oppenheimer reports that for Stereotactic radiosurgery (SRS), the final robotic SRS codes are generally down in line with proposed rules, with first fraction (G0339) down 3% and 2nd–5th fraction (G0340) down 10% (HOPPS). Reimbursement for Elekta's Gammaknife (77371) is down 5% (HOPPS), while other SRS codes are flat to slightly up (both from proposed and y/y). At the ASTRO 2008 Annual Meeting, ASTRO’s President-elect, Dr. Anthony Zietman, M.D. gave a presentation on proton radiation for early prostate cancer. Dr. Zietman spoke on results from a phase I/II clinical trial in which it failed to show any benefit over other forms of radiation[19]: “Proton radiation has unquestioned value for treatment of certain rare cancers, said Dr. Zietman. However, the technology has yet to demonstrate any advantages over other forms of radiation therapy for common malignancies, such as lung and prostate cancer, where proton radiation centers would recoup the capital investment. "The problem is that most patients in the United States treated with proton beam are treated for prostate cancer," he said. "It's the economic driver of the proton avalanche." Given the lack of any demonstrated superior outcomes for Proton Therapy why does Palmetto allow proton therapy to be covered for the treatment of prostate cancer and not SBRT? Before Palmetto implemented the non-coverage policy of prostate cancer for SBRT it had been covered in California under the exact same circumstances as proton beam therapy. Unlike SBRT, Palmetto continues to cover proton beam despite any evidence to support its superiority over SBRT or any other forms of radiation therapy. As a cancer patient and as a concerned citizen, I believe that my government should make available all treatment options including SBRT, not just those that are backed by vested financial interests. I feel very strongly about a patient’s right to make an informed choice for their treatment. Every treatment has risk; and from my extensive research every other option has higher risk of death, infection or biological failure. It must be the patients’ choice in consultation with our doctors to select the treatment that best meets our specific limitations or medical needs. Best Regards, Fred Kinder Prostate Cancer Patient A ZERO founder The Project to End Prostate Cancer________________________________________ References 1 The Palmetto GBA Website stated: Palmetto GBA encourages individuals interested in attending the open meeting to register early. Registration will be closed 2 business days prior to the meeting or once space limitations are reached, whichever comes first. Individuals seeking to present information at the Open Draft LCD meeting should submit a request via E-mail to [email protected] along with a copy of their presentation. 2 IMRT 81-86 Gy Http://books.google.com/books?id=4NbOoKYvrwsC&pg=PA327&lpg=PA327&dq=prostate+cancer+imrt++86+Gy&source=web&ots=NLu0ibF4j5&sig=2xsTw9NWDbiSNr_mj-i0Ay_wO3Y&hl=en&sa=X&oi=book_result&resnum=4&ct=result 3 AHRQ’s February 2008 report on prostate cancer alternatives link: http://effectivehealthcare.ahrq.gov/healthInfo.cfm?infotype=rr&ProcessID=9&DocID=79 4 http://www.joearrington.org/Prostate_article.pdf 5 http://www.medicalnewstoday.com/articles/55980.php 6 http://jnci.oxfordjournals.org/cgi/content/full/96/18/1358 7 http://www.ncbi.nlm.nih.gov/pubmed/18164858?dopt=Abstract 8 Grills IS, Martinez AA, Hollander M, Huang R, Goldman K, Chen PY, Gustafson GS. High dose rate brachytherapy as prostate cancer monotherapy7 reduces toxicity compared to low dose rate palladium seeds. J Urol. 2004 Mar;171(3):1098-104. 9 Fuller DB, Naitoh J, Lee C, Hardy S, Jin H. Virtual HDR(SM) CyberKnife Treatment for Localized Prostatic Carcinoma: Dosimetry Comparison With HDR Brachytherapy and Preliminary Clinical Observations. Int J Radiat Oncol Biol Phys. 2008 Apr 1;70(5):1588-97. http://www.ncbi.nlm.nih.gov/pubmed/18374232?dopt=AbstractPlus 10 King CR, Lehmann J, Adler JR, Hai J. CyberKnife radiotherapy for localized prostate cancer: rationale and technical feasibility. Technol Cancer Res Treat. 2003 Feb;2(1):25-30 http://www.ncbi.nlm.nih.gov/pubmed/12625751 11 Hara W, Patel D, Pawlicki T, Cotrutz C, Presti J, King C. Hypofractionated stereotactic radiotherapy for prostate cancer: early results. Int J Radiat Oncol Biol Phys. 66(3)(supplement):S324-325, 2006. 12 King CR, Brooks J, Gill H, Cotrutz C, Pawlicki T, Presti JC. Stereotactic Body Radiosurgery for Localized Prostate Cancer: PSA results and Toxicity of a Phase II Clinical Trial. Int J Radiat Oncol Biol Phys. 2008 in press. 13 Madsen BL, Hsi RA, Pham HT, Fowler JF, Esagui L, Corman J. Stereotactic hypofractionated accurate radiotherapy of the prostate (SHARP), 33.5 Gy in five fractions for localized disease: first clinical trial results. Int J Radiat Oncol Biol Phys. 67(4):1099-105. Mar 15 2007 14 Fuller DB, Lee C, Hardy S, Jin H. Virtual HDR(SM) CyberKnife Radiosurgery: Technical Evolution and Clinical Results One Year Following Introduction. CyberKnife Society Annual Meeting. January 2008, Scottsdale AZ. 15 Bill-Axelson A, Holmberg L, Ruutu M, Häggman M, Andersson SO, Bratell S, Spångberg A, Busch C, Nordling S, Garmo H, Palmgren J, Adami HO, Norlén BJ, Johansson JE; Scandinavian Prostate Cancer Group Study No. 4. Radical prostatectomy versus watchful waiting in early prostate cancer. N Engl J Med. 2005 May 12;352(19):1977-84. 16 Fuller, DB, Lee, C., et al. Prospective Evaluation of CyberKnife® Radiosurgery of Low and Intermediate Risk Prostate Cancer: Emulating HDR Brachytherapy Dosimetry. http://www.accuray.com/Clinical-Development/Clinical-Studies.aspx 17 Meier, R., Cotrutz, C., et al. Prospective Evaluation of CyberKnife® Stereotactic Radiosurgery of Low and Intermediate Risk Prostate Cancer: Homogenous Dose Distribution. http://www.accuray.com/Clinical-Development/Clinicalstudies. Aspx 18 N.Y. Times IMRT Article http://www.nytimes.com/2006/12/01/business/01beam.html?_r=1&ei=5070&em=&en=b2cbba99f87b9209&ex=1165122000&adxnnl=1&pagewanted=all&adxnnlx=1228563777-s9lnjfHy/nh4vi/sySQKGw 19 Proton Therapy link: http://www.medpagetoday.com/MeetingCoverage/ASTRO/11076http://www.medpagetoday.com/MeetingCoverage/ASTRO/11076 20 CTAF link to meeting: http://www.ctaf.org/content/general/detail/700
Men beware! Read the sad truth about prostate cancer testing and treatment. Prostate cancer lies, exaggerations, deception and elder abuse. A prostate cancer survival guide by a patient and victim. Men, avoid the over diagnosis and unnecessary treatment of prostate cancer. Read about prostate cancer patient exploitation, testing and treatment dangers. If you don’t want to read this entire document, just read the bold print. One day your life or your quality of life may depend on it. Revised May 9, 2017 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, clinical trials, medical mistakes, exploitation, elder abuse, HIPAA laws or privacy issues should read this document. Prostate cancer patients are often elderly, over treated, misinformed and often exploited for 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). Per some studies: 1. Multiple studies have verified more 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. 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 biopsy’s performed per year in the USA. 7. 6.9% hospitalization within 30 days from a 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. 60% had a prescription filled for an infection after a Biopsy. 11. Black men are at an increased risk of prostate cancer. 12. Prostate cancer patients are at an increased risk for fatigue, depression, suicide and heart attacks. 13. Depression in prostate cancer patients is about 27% at 5 years, for advanced prostate cancer patient’s depression is even higher. 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. The medical field is now 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. This may only shift the accountability to the victims, patients are not doctors. 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 over treating? 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. A 12, 18 or 24 core blind biopsy, holey prostate! Prostate blind biopsies are dangerous. 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 (most of the time) through the rectum into a gland the size of a walnut, a blind Biopsy can result in (per studies) prostate infections, a risk of permanent or temporary erectile dysfunction, 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 controversy that a biopsy may or may not 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 information is 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. 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 in the mail. This is often a HIPAA violation. If you call about a clinical trial your phone conversation will probably 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. Your privacy and confidentiality may be 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. 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). 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. Very often records are placed on a Health Information Exchange (HIE) or server, dozens, sometimes even hundreds or thousands of people may have access to medical records. Some major databases like SEER are linked to Medicare records to determine “the final outcome” for researchers, studies, drug companies-often for clinical trials offers, etc. SEER is an appropriate name for this database! Your drug prescription history can also be tracked by insurance companies and others. Records may be packaged with others and offered for sale, this does often happen. Your medical records can be downloaded to multiple servers all over the world to countries that do not have any regulations for privacy. 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 you apply for disability. 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). Patients can also become the victims of financial or medical Identity theft. 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, 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 chart. 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 “for quality purposes”. 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 and 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 pharmacy workers and your prescriptions, labs, etc. A patient’s dignity: Prostate cancer testing and treatment is often 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 blogger 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 old 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 50 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 and also possibly metal detectors 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. Men are sometimes 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 (may be profitable for doctors if provided at the doctors office and not a pharmacy) and can have horrible, strange and devastating side effects, feminization, fatigue, weight gain, 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. Men are sometimes castrated (orchiectomy) as a cancer treatment to reduce testosterone. 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 25% 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 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 cares. I personally know of at least 5 medical staff that I would consider incompetent, abusive, mentally disturbed or drug abusers that work in doctors offices and hospitals and I now understand why medical mistakes are the third leading cause of deaths in the USA. TV and sometimes the public seem to idolize doctors, nurses and caregivers; however health care workers seem to have 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 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 may 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 to 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. The prostate may have unknown or undocumented functions. The removal or destruction of the prostate often results in chronic fatigue, loss of libido and depression that often can not be accounted for. In my opinion: Castration, ADT hormone therapy (chemical castration), LDR Brachytherapy (radiation seed implant), radiotherapy, surgery 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, 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 seldom or never be performed. Approved advances in prostate cancer treatment mostly consisting of newer 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. QOL (quality of life) issues have not been adequately addressed. Profit sometimes 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. 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. Often 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 increased fatigue, depression, sexual dysfunction and other symptoms. 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. Any cancer patient (man or woman) who are being offered chemotherapy should be particularly cautious. Chemotherapy can be extremely toxic and sometimes deadly. 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, sometimes for profit. A doctor may purchase a quantity of chemo drugs for $10,000 and charge a patient (insurance) $20,000. What is the motive for some doctors to perform Genomic testing and giving a patient a different and more effective treatment at an unknown profit versus a guaranteed $10,000 profit with a probable worthless and harmful treatment? This is a well documented and common practice. When a doctor, rich, famous or influential person becomes ill often the testing and treatment are more thorough, advanced and beneficial. If you are an average or uninformed patient you may be a prime candidate for predatory doctor offering prostate cancer testing and treatment. Often few good choices often 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 never 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 yours 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 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. 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. It is well documented that all forms abuse do occur to the aged and disabled in nursing homes and other facilities including, neglect, theft, starvation, torture, harassment, sexual assault, etc. 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) stolen and replaced by her family several times 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 27% 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. 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 sometimes or 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. At these prices Lilly could consider including the bathtubs featured in its advertisements for Cialis. The cost of a 30 day supply of Cialis is usually well over $300 and the cost of an inexpensive bathtub is about $200. Many insurance companies will not pay for ED drugs or treatment. The patent for Viagra should have already expired in the USA. 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 to $2 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 (more exaggerations)-: A doctor (and literature) may state 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 fewer than 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, you 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%. Always ask what is the “biochemical recurrence” (AKA rising PSA or treatment failure) rate for well beyond 5 years with your computer software simulation. 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. Patience 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 have genomic testing and look into other advanced treatments if available and genomic testing. 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, it could be the best of the bad choices). 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 often prostate cancer testing and treatment could be 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 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 conventional treatments with a verbal guarantee of “no long term side effects”. However this nurse could not answer any of my basic questions, lacked any credibility and sounded like a 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 Therapy) 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 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 completely noninvasive treatment (SBRT), resulting in 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 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. It seems that this prostate cancer nightmare maze was intended for maximum physical, psychological, financial harm and to be of questionable benefit. My prostate cancer experience has been one of the worst events that have happened to me in my lifetime and I specifically blame modern medicine for not protecting patients from predatory doctors, substandard technology and a lack of regulations that would protect patients. 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. A 9 week EBRT radiotherapy was just to long and laborious. Because castration (orchiectomy), ADT hormone therapy (chemical castration), LDR Brachytherapy and blind biopsies are what I consider Frankenstein medicine (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 bad and acceptable at that time for me. 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 a conventional 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 accelerated my ageing (through the stress, testing, treatments and physically from the radiation). Per the new SBRT studies and my 4+3 Gleason score, 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 now sure prostate cancer testing and treatment is all smoke and mirrors (lies). 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 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 standard in medical care now 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. Bring someone educated or astute with you to your consultations and appointments. Insist on Genomic testing if you have prostate cancer. Avoid doctors that are mostly profit motivated. Do not submit to a prostate blind biopsy if other options are available. 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. 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, over one million deaths in 4 years) more then suicide, firearms and motor vehicle accidents combined. These statistics do not include people that have had there lives destroyed by modern medicine or a reduction in QOL (quality of life). Strict guidelines for prostate 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 standardized education book or PDF document needs to be created and distributed to all high PSA and prostate cancer patients. 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: The above 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 and prostate cancer patients 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. I have also had excellent doctors and nurses, however this may not protect you or I from the bad ones. Are some other doctors and nurses exceptional? Yes! 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, blogs, studies, articles, etc. Recommended reading: The Great Prostate Hoax by Richard J. Ablin Invasion of the Prostate Snatchers by Mark Scholz M.D. 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 above 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 this 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.