My PSA has risen to 4.4 as of my most recent test, roughly 10% above the test over a year ago. Anything over 4 is officially considered high for my age group. My PSA has been rising almost 10% a year on average for almost 9 years. Best I can tell, this simply means that my prostate has been growing almost 10% a year, most likely due to a common benign condition known as BPH. A sudden increase on PSA or detection of lumps on a DRE by a physician would likely lead to additional testing.
PSA testing is still controversial, with new studies and policies recommending against routine testing. There are also experts who still think it is a valuable tool, highlighted by Ben Stiller’s recent comments.
http://www.livescience.com/56371-ben-stiller-prostate-cancer-psa.html
One problem with the PSA test is that it often suggests that men have prostate cancer when they do not have cancer, according to the USPSTF. About 75 percent of men with abnormally high levels of PSA do not have cancer. These so-called false positive results can lead to anxiety and unnecessary follow-up tests, the USPSTF says.
Men beware!
In my opinion: Read the hard facts about prostate cancer testing and treatment what no one will tell you about, even after it’s too late. This is information all men over 40 should have. Also anyone concerned about cancer in general or privacy issues should read this warning. Prostate cancer patients are often elderly, over treated and exploited for profits, AKA elderly abuse.
The overtreatment of prostate cancer for profit must stop! The treatment and well documented overtreatment of prostate cancer often results in devastating and unnecessary side effects and sometimes death. Profit vs. QOL (quality of life).
Per some studies:
1 man in 6 will be diagnosed with prostate cancer in his life.
About 233,000 new cases per year of prostate cancer.
About 1 Million blind biopsy’s performed per year in the USA.
6.9% hospitalization within 30 days from a biopsy complication.
About 1.3 to 3.5 deaths per 1,000 from prostate blind biopsies.
.2% deaths as a result of prostate cancer surgery.
60% had a prescription filled for an infection after a Biopsy.
Medical mistakes are the third cause of deaths in the USA.
Prostate cancer patients are at an increased risk for fatigue, depression, suicide, heart attacks and accidental death.
Prostate cancer patients are often elderly and exploited for profit, the treatments offered almost always have horrible side effects, and newer treatment options are ether unavailable or not offered to patients or available outside the USA. Also men are often over treated for profit. Prostate cancer is often slow growing and of low risk and can just be monitored. Often no treatment is the best treatment.
If a surgeon is financially responsible for a building lease or a large staff or an oncologist is also responsible for a lease on 5 million dollars of radiation treatment equipment, do you think they would be more or less upfront about the benefits and hazards of treatment? Do you think the profit margin would compromise some doctor’s ethics?
Men with a high PSA tests result are usually sent to an urologist for a blind biopsy. Men should be told about other options: Percent free PSA test, PCA3 urine test or a MRI test before receiving a blind biopsy. These tests can often eliminate the need for a more risky and invasive blind biopsy. Insertion of 12 to 18 large holes through the rectum into a gland the size of a walnut, a blind Biopsy can result in prostate infections, a risk of permanent or temporary Erectile Dysfunction, urinary problems and sometimes even death from sepsis (About 1.3 to 3.5 deaths per 1,000 from Blind biopsies). A blind biopsy can also increase PSA reading for weeks or months. 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.” This statement is an extreme exaggeration. Very often a mans semen will turn into a thick jet black goo. This could be an unpleasant surprise for a man and especially for his partner. However if a biopsy is performed before Halloween or April fools day this may be of some use to a few patients. If a very prestigious hospital did not publish the truth about the color of semen, what other information is not being disclosed?
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 are usually 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 radiation clinical trial. Prostate cancer patients where intentionally treaded with a huge dose of radiation resulting in disastrous long term side effect for some of these men. A large percentage of prostate cancer patients in this study had low risk prostate cancer.
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.
Prostate cancer patients are asked to fill out a series of EPIC questioners and other questioners. The EPIC questioners ask intimate details about patient’s sex life, urinary and bowl function. By a prostate cancer patient completing a EPIC questioner, he may be able to assist his doctor, nurse or other office workers track his progress or decline. By refusing to fill out these questioners one can help insure his privacy and insure he do not unknowingly become part of a study or clinical trial or other collective survey. He may be told these questioners and records are confidential; this statement may be an exaggeration. If you have radiotherapy patients may have a picture taken before treatment to verify identity. One sample of abuse concerning a patient; A distraught prostate cancer patient was told the EPIC questionnaire was strictly confidential and a requirement to fill out, after filled it out and turning it in he had 4 of the female office staff stood shoulder to shoulder, read his questionnaire, whispering, pointing and ogled intently at him. This patient left the office, never returned and discontinued all future cancer testing, treatment or PSA monitoring. 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? Records can be vulnerable. 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 collage interns, etc.. This may 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 (SEER) are linked to Medicare records to determine “the final outcome” for researchers and studies. Records may be packaged and offered for sale, this does happen. If a doctor or a patient or insurance company is involved in a criminal or civil case, medical records may become public court or law enforcement records. All patients should get a copy and read any confidentiality disclosures statements (HIPAA statements). Patients can also become the victims of 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 a hospital stay you may sometimes be met with resistance. All patients should avoid supplying unnecessary information whenever possible, supply relevant information only.
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. 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.
Brachytherapy is radiation seed implant. This treatment procedure implants 50 to 100 radioactive seeds in the prostate, commonly resulting in urinary problems. The patient will literally become radioactive for about a year. The patient can set off radiation alarm and metal detectors at airport. His semen will become radioactive. The patient will become like a walking Chernobyl, having radioactive scrap metal in his crotch. He will also be required to carry a card in his wallet stating he is radioactive. The videos of this procedure seem disturbing and bizarre. However 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 therapy is often very expensive (profitable for doctors) and has horrible, strange and devastating side effects, feminization, fatigue, etc.. Hormone (ADT) therapy is sometimes over prescribed for profit. This treatment has so many temporary and permanent mind and body altering side effects that doctors will not inform patients about all of them. Men are sometimes actually castrated (orchiectomy) as a cancer treatment to reduce testosterone.
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. Patients are often not told about the high risk of a shorter penis after surgery due to the shortening of the urethra. Long term risk of sexual dysfunction, incontinence, fatigue, etc. is about the same as conventional surgery. Patients undergoing surgery are at a small risk of developing post traumatic stress disorder (PTSD) and a 25% chance of long term or permanent fatigue. Also .2% risk of deaths as a result of prostate cancer surgery or medical mistakes.
Patients should not be naive. Medical mistakes are the third cause of deaths in the USA. 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, be apathetic or rushed. In some cases harm can be done or not prevented with intent. Doctors offices and clinics see hundreds or more patients in a relatively short amount of time. This is often a disadvantage to patients, empathy and quality of care can be compromised. Sometimes a medical assistant or an office staff member may be the person that overseeing much of a patients care. Patients should be aware that often QOL (quality of life) may be secondary or an absent goals in treatment. Overtreatment for profit or to prevent an unlikely death or metastization from low risk cancer may be the primary or 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 has an extensive list of side effects that can be devastating for men. Biopsies and treatment are degrading, stressful and often unnecessary.
The risk of long term chronic and permanent fatigue (that can result in depression) is almost always understated if mentioned at all to patients. 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, hormone therapy (chemical castration), Brachytherapy (radiation seed implant), surgery and blind biopsies are often psychically and emotionally brutal, traumatic and disturbing. These types of treatments (Frankenstein stile medicine) are primitive and almost beyond belief in today’s world of advanced technology. Newer treatments like 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, no blind biopsies should be performed.
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 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 often outweighs QOL.
Some oncologists are using 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 patients. However as far as reducing long term side effects, only very small gains have been made with the newer radiotherapy equipment. A patient should be extremely skeptical if exaggerated claims are made about reduced long term side effects, especially fatigue and ED rates.
Radiotherapy can result in a 5% to 30% temporary or permanent drop in testosterone levels. This drop is determined by the testicular radiation dose (treatment equipment and planning). A significant drop in testosterone can result in increased fatigue, depression and sexual dysfunction.
Radiation 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. 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.
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 a few. 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. Most Chemotherapy is 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 is often more toxic to the patient then to the cancer. Chemotherapy may be extremely expensive, profitable for doctors and often misused or overused.
Do you think any other 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 treatment and monitoring at the risk of upsetting the doctors who are over treating? Most elderly men are not willing to openly discus there sex life, incontinence or other personal problem making them a more vulnerable victim.
Most of the time 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 are often misled about the expected side effects and results of the treatment being offered. The risk of chronic fatigue is almost 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 required.
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 in erectile dysfunction. Loss of libido occurs at about 45%. Often claims of prompt effective treatment for ED if it occurs after treatment are often misleading. Statistics for ED percentages from treatment are quoted after treatment with Viagra, muse or other ED treatments, therefore the 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 about 100%. The cost for ED drugs like Levitra, Cialis, Viagra and Muse are kept very expensive by drug companies, about $9 to $45 per 1 pill. Most insurance companies will not pay for ED drugs or treatment. Less expensive generic drugs are usually unavailable. Viagra should have already become available in a generic form for about $1 to $2 a pill. The patent for Viagra should have already expired. This is further exploitation by the drug companies of men in general. Men are further 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.
In conclusion: Prostate cancer patients are often elderly and exploited for profit. 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 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. Also he should try and avoid Hormone therapy if possible because of the multiple side effects. 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 and traumatic. ED and fatigue is still a high long term risk. Radiation with Hormone therapy has a high risk of long term fatigue.
Protect yourself: Do not let the sterile, friendly and professional environment of a doctor’s office denture 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. 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 or have advanced age. 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. 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. If treatment is necessary talk to your doctor in advance about side effect management, chronic fatigue, ED, Etc.. Contact a good prostate cancer support without a conflict of interest.
Clarification: The intent of this document is not to imply all doctors are dishonest or to condemn medical providers. The intent is to educate uninformed prostate cancer patients of the consequences and dangers that may await them so they can take appropriate action and to inform patiants of real world, typical or worst case scenarios. Spelling errors, differences in opinion, errors in semantics do not invalidate this document or its intent.
Disclaimer: I have no confect 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.
Anonymous