Questions to ask about your pathology report

Nancy Ferrari

Senior editor, Harvard Health

It should be clear by now that pathology reports vary in large part because the clinical features they analyze often require some subjective interpretation. This means it’s important to question the findings and make sure you understand them before you make any decisions about treatment.

Start by studying your pathology report closely. Circle anything that doesn’t make sense to you. Let your doctor know how much you know, and ask questions until you are satisfied that you understand the report and both the pathologist’s and your physician’s thinking.

In particular, look for information about the location and extent of your cancer. If the information is not available in the report, find out why. If your report appears to be incomplete or has not been closely examined or explained, do not hesitate to get a second opinion or request a second biopsy.

Table 1 provides some suggestions about what questions to ask. Although it may feel uncomfortable at first to question your doctor, keep in mind that learning the answers will help you work with your doctor to make the best treatment decisions. After all, you are the one who has to live with the consequences.

Table 1: Questions to ask about your pathology report

Questions to ask Why you need to know
What is the Gleason score? This is one of the most important factors in determining whether the tumor is confined to the prostate and how aggressive the cancer is. See Table 1 in “Understanding your prostate pathology report” for a simple risk assessment.
How many cores were taken during my biopsy? Six cores were once standard, but concern about whether this practice missed cancers has led to changes in how biopsies are done. Controversies remain.The consensus among experts is that it’s better to take 10 to 12 cores during a standard biopsy, in order to sample more of the prostate. When a patient is considered at high risk for cancer, based on either PSA level or the results of a previous biopsy, some medical centers do saturation biopsies, sometimes involving as many as 20 or more cores.
What areas of the prostate were the cores taken from? Ideally, prostate biopsies take cores from both sides of the prostate (bilateral sampling) and from particular regions on each side of the prostate. Not only does this increase the likelihood that the biopsy will sample enough areas of the prostate to provide a definitive diagnosis, but, if cancer is found, knowing where the cores were taken from will help determine prognosis and guide treatment.
What percentage of the cores were positive (had cancer cells)?Of the positive cores, what percentage of the tissue consisted of cancerous cells? Answers to these questions can provide information about how extensive the cancer is and the likelihood that it has spread beyond the prostate. (The raw data are fed into statistical models, or nomograms, that predict the extent of cancer and the probability of progression.) This information will also help determine treatment.
What about neuroendocrine differentiation and small cell components? These may signal a more advanced cancer. Neuroendocrine differentiation may also help predict hormone refractory disease (disease that no longer responds to hormone therapy).
Were there any additional comments and what do they mean? Your pathologist may use this section to note observations such as atypical (equivocal) findings that could indicate that a repeat biopsy should be performed because cancer can’t be ruled out.
Was high-grade PIN identified? High-grade PIN is a precancerous condition that raises the likelihood of finding cancer on a future biopsy. If high-grade PIN is found, discuss with your doctor the best time frame for returning for a follow-up biopsy.
How will you use the information in the pathology report to guide my treatment? The more you understand, the more you will play an active role in determining the best course of action every step of the way.

Originally published Oct. 1, 2007; last reviewed April 27, 2011.

Comments:

  1. JJ

    Men beware!
    Read the sad truth about prostate cancer testing and treatment.
    A prostate cancer patient survival guide by a patient and a victim.
    Men, avoid the over diagnosis and unnecessary treatment of prostate cancer.
    Read about prostate cancer patient exploitation, testing and treatment dangers.
    Prostate cancer lies, exaggerations and deception.
    Revised March 12, 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, HIPAA laws or privacy issues should read this text. Prostate cancer patients are often elderly, over treated, misinformed and often exploited for profits. The testing, treatment and well documented excessive treatment 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. 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 because of 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. About 1 Million 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.

    If a surgeon is financially responsible for a building lease or a large staff or an oncologist is also responsible for a lease on multimillion dollars of 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?

    A 12, 18 or 24 core blind biopsies, holey prostate! 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 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 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. 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.

    Privacy and confidentiality may be just an illusion: 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 the records or why the records are being looked at. Who has access to medical records? Probably everyone that works in a medical office or building has access to the records. This may include/however not limited to non-medical employees, office workers, bookkeepers, janitors, insurance companies, temporary high school or college interns, etc. This may also include other medical facilities, programmers, hackers, researchers, etc. Often records are placed on a health information exchange (HIE), dozens, sometimes even hundreds or thousands of people may have access to the records. Some major databases like SEER are linked to Medicare records to determine “the final outcome” for researchers, studies, drug companies, etc. SEER is an appropriate name for this database! Your drug prescription history can also be tracked. Records may be packaged and offered for sale, this does happen. Your medical records can be downloaded to 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. 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 entailed 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. Under the HIPAA law all access to your records is allegedly by a “Need to know” basis only, this is another exaggeration. 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. My family doctors office hires summer time high school interns with full access to all records. 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. 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? Even without HIPAA privacy law violations, office records can be accessed by multiple people and appear in multiple databases. Your privacy and confidentiality is probably not that secure!

    A patient’s dignity: Prostate cancer treatment is often degrading and demoralizing. 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 testes 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. 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, etc is about the same as conventional surgery, ED rates my possibly be a little better. 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 depression 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. 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. What are the main reasons nurses get fired: 1. Prescription drug abuse. 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 and sexual dysfunction. 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.

    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. 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 radiotherapy 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.

    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?

    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 be sometimes misled 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 and ageing: 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!

    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%. 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 if it occurs 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 intestinally 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.

    The numbers game: 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 2 years for a patient under 65 years old and with an ED drug treatment option. For a patient at 3 years, over 65 and no ED drugs the ED rate may be about 75% 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, 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. 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. I have read and have been given some extremely exaggerated claims 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 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 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.

    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 medical assistant seemed to have a mental defect exhibiting arrogant, rude and abusive behavior and was intent on inflicting psychological harm to me. Shortly after my Dr. “A” visits ended, his medical assistant was no longer employed at his office and no person in that office would refer to her employment or her existence. 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 medical assistants 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 treatment with Dr. “K”, he seemed honest and 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. Dr. “K” and his staff seemed competent and 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 and some other short term side effects. At this time I am doing well, 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 probably 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 medical assistant. 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. At least 40% (probably substantially more) of the health care workers I came into contact with did or attempted to do some form of harm to me: 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; 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 increased physical, psychological, financial harm and to be of questionable benefit.

    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 LDR 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 or a perverted nightmare) I avoid all of them. Unfortunately I was deceived and misguided into having a blind biopsy. I do not believe other 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 no PSA testing and treatment or traveling for advanced treatments from a competent provider if practical and available. 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.

    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 blind biopsy if other options are available. Get a second or third opinion if you are being offered treatment with low risk 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 more support contact a good prostate cancer support group without a conflict of interest.

    One more time: Multiple studies have verified more deaths caused from prostate cancer testing and treatment then from prostate cancer itself. 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.

    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 and 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 testing should be required before any patient is sent for treatment, to avoid overtreatment and insure the correct treatment.

    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. 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.

    Disclaimer: I have no conflict of interest. I have no affiliation with 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 or distribute this document without changing or modifying it or its content.

    “The thing about the truth is, not a lot of people can handle it” Conor McGregor.
    I have been extensively criticized for creating this document. In order to insure my privacy and avoid any potential reprisals, further abuse or exploitation, I will remain Anonymous.

  2. Prof.G.D.GOKAK

    Sir,
    I have undergone a blood test using SERUM sample. and Various tests have been conducted.
    Would you tel me which particular test/parameter would indicate that whether sample contains TOBACCO .
    Thank you

  3. Aldi

    We are praying for you anskig God to give you HIS peace and understanding through this time. You have to cling to HIM right now & know that so many people are praying for you.Much love, Katie

Commenting has been closed for this post.