Men beware!


Editorial note: The following is an anonymous commentary that has been posted twice to this web site in recent days. Parts of it are factually accurate. Some of it is certainly factually inaccurate. Most of it appears to refer to the situation here in America. And a lot of it is personal opinion (as the author states).

Opinion is fine. However, the one place where we agree 100 percent with the author is at the end, where he (or she) writes: “If you need treatment or medical advice, consult a competent and trustworthy medical doctor.”

We wish to be extremely clear that The “New” Prostate Cancer InfoLink thinks there are several, serious factual inaccuracies in some of the material below. It seems apparent to us that the author is unaware of how often we tell our readers that simple monitoring of some type is an entirely appropriate method for managing low-risk forms of prostate cancer. Higher-risk and metastatic forms of prostate cancer are a whole other matter. It also seems apparent to us that the author is not well informed about the problems associated with all sorts of newer categories of treatment. We have no idea why he or she is of the opinion that “orphan drugs” are an appropriate solution to the treatment of any form of prostate cancer. Your sitemaster has significant experience in the field of orphan drug therapy, and he is unaware of any orphan drug that has been shown to be effective and safe in the long-term treatment of any subset of prostate cancer patients as of this time.

Finally, the text below has been lightly edited to remove errors in spelling, terminology, punctuation, and other matters but is otherwise reproduced pretty much as submitted to us. The author, who is anonymous and unknown to us, provided this e-mail address, at which we assume he or she can be contacted should anyone wish to do so.

—–

Read the hard facts about prostate cancer testing and treatment which 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, a.k.a. elder abuse.

The over-treatment of prostate cancer for profit must stop! The treatment and well-documented over-treatment 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 of prostate cancer are diagnosed each year.
  • About 1 million blind biopsies are performed per year.
  • 6.9 percent of patients will require hospitalization within 30 days from a biopsy complication.
  • About 1.3 to 3.5 deaths per 1,000 from prostate blind biopsies.
  • 0.2% 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?

The risks and percentages for side effects from a blind biopsy and prostate cancer treatments are usually understated to patients and some side effects are not disclosed at all.

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 your PSA reading for weeks or months.

Prostate cancer patients are often sent for a bone scan. A bone scan has about a 13 percent 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 prostate cancer patients or patients of advanced age are often sent for aggressive treatment by some doctors when monitoring is usually a better option. An extreme example of over-treatment is one SBRT (a 5 day radiation treatment) clinical trial. Prostate cancer patients were intentionally treated with a huge dose (50 Gy) of radiation resulting in disastrous long-term side effects 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 and other questionnaires. The EPIC questionnaires ask intimate details about the patient’s sex life, urinary, and bowel function. By a prostate cancer patient completing an EPIC questionnaire, he may be able to assist his doctor, nurse, or other office workers track his progress or decline. By refusing to fill out these questionnaires he can help insure his privacy and insure he does not unknowingly become part of a study or clinical trial or other collective survey. He may be told these questionnaires and records are confidential; this statement is an exaggeration. 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 are vulnerable. Probably everyone that works in a medical office or building has access to records. This may include 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, drug companies, etc. Often records are placed on a health information exchanges (HIEs), dozens, sometimes even hundreds or thousands of people may have access to the records. Some information can even be placed on databases in China or all over the world. Some major databases (SEER) are linked to Medicare records to determine “final outcomes” for researchers, college student, and studies. Allegedly sometimes identities are anonymous; however, how can patient records be updated and tracked without a name or some other identity? 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 disclosure statements (HIPAA statements). HIPAA laws will only partially protect patients. Patients can also become the victims of medical identity theft. Patient privacy is under attack. 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 doctors’ notes or a hospital stay you will probably be met with resistance. All patients should avoid supplying unnecessary information whenever possibl;, 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 alarms 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, a.k.a. 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 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 cannot always be spared. Robotic surgery can result in a faster initial recovery. However, the 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, be incompetent, make mistakes, be apathetic. In some cases harm can be done or not prevented with intent.

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 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 percent. 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-style medicine) are primitive and almost beyond belief in today’s world of advanced technology. Newer treatments like hyperthermia, boron neutron capture therapy, focal ablation, and orphan drugs should be approved and used when appropriate. Biopsies should be limited to selective, image-guided samples only; no blind biopsies should be performed.

Advances in prostate cancer treatment mostly consist 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 issues.

Some oncologists are using radiotherapy (EBRT — external beam radiation treatment) for cancer treatment. New technology consists of: IMRT, SBRT, IGRT, VMAT, TrueBeam, Cyberknife, etc. This newer, faster, more accurate and easier to set up 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.

Radiotherapy can result in a 5 to 30 percent 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 a 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 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 is 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 is also extremely expensive, profitable for doctors, and often misused or overused.

Do you think the AMA, FDA, or 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 their sex life, incontinence, or other personal problems, making them a more vulnerable victim.

Most of the time few good choices exist for treatment. A prostate cancer patient’s 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, urologists, and oncologists 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 almost always told to exercise, get plenty of sleep, “pace yourself” 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 drugs 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).

Depression in prostate cancer patients is common, about 27 percent at 5 years (per some studies), and for advanced prostate cancer patients depression rates are 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 percent. Often claims of prompt, effective treatment for ED, if it occurs after treatment, are 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 percent or higher for most treatments. ED rated at 15 years may be as high as 90 percent or higher for most treatments. For cryotherapy ED rates are about 100 percent. The cost for ED drugs like Levitra, Cialis, Viagra, and Muse are kept very expensive by drug companies, about $9 to $45 per 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. This is further exploitation by the drug companies of men in general. These 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 does 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, less invasive, and less traumatic. ED and fatigue is still a 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 detur you from protecting yourself from over-treatment or any unnecessary life-changing tests and treatments. If you are concerned about misuse or privacy issues, refuse to fill out EPIC questionnaires 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 for low-risk cancer or advanced age. Learn about all your treatment options, testing, and side effects. Verify everything you are told. Under the HIPAA law you are entitled 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 many procedures. If treatment is necessary, talk to your doctor about side effect management, chronic fatigue, ED, etc. Contact a good prostate cancer support group … or a local support group without a conflict of interest.

Disclaimer: I have no conflict of interest. I have no affiliation with any support group or other organization. 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.

18 Responses

  1. Sitemaster:

    I have two questions:

    (1) Why post something that you know to have factual inaccuracies?

    (2) If you want to post it to demonstrate all the factual inaccuracies one sees on the internet, why do you not respond to each one?

    You gave this less scrutiny and more “airplay” (by re-posting in its entirety) than you do with the peer-reviewed journal articles you normally comment upon.

  2. Horrible! This person could probably find work in the new administration. Anti-everything. I will stick to the science!

  3. Men beware!

    And yet when the USPSTF effectively says “Men beware!” (discourage the use of this service) you say the USPSTF should give it a higher grade. You are nothing if not hypocritical.

  4. What part is not accurate?

  5. This is an alarmist screed, which could have the effect of discouraging some men, who may already be fearful, from getting involved with the nasty “for profit” medical system. I went through it all: regular PSA tests, digital exams, visits to my urologist, and getting the diagnosis plus a confirming second opinion. I did not get a “blind” biopsy; it was done with guidance from an ultrasound probe. It turned out to be a Gleason 9 cancer, fortunately detected before any metastasis.

    I received external radiation (IMRT) plus hormonal therapy. My PSA dropped from 5.1 to approx. 0.2 and has stayed there ever since. That was well over 12 years ago and I feel fine!

    I had side effects of fatigue and some rectal bleeding. Both of those cleared up when the treatments ended and have not returned. I cannot comment about ED because I already had that from unrelated circulation problems. But since I am 87 years old now, I don’t care.

  6. There are plenty of facts I would dispute in the above, but what strikes me more than that is that the writer seems intent on casting so many of these facts in the most negative light possible. If I were a new patient reading this without other sources of information, I think I might feel quite demoralized. Caution is indeed warranted before undertaking any treatment. But I would advise patients to become informed and take charge of their treatment to the extent possible. A good prostate cancer support group can make a huge difference — both in buoying one’s spirits and in pointing the way to options one didn’t know existed.

  7. Allen:

    I posted this because it is one of the best examples I have ever seen of the thinking that many men go through when they consider treatment for prostate cancer (some before treatment and some afterwards). You and I may both find this to be bizarre, but it is important for us all to understand that this is the reality of how many men react to their disorder.

  8. Dear Chris:

    Like the author of the above, you are entirely entitled to your opinions. However, I have never suggested that the USPSTF should give PSA testing a “higher grade”.

    What I have consistently stated is that the value of PSA testing is a judgment call for each individual and that it is wrong to state absolutely that either “no one” or “everyone” should be screened. I agree with the USPSTF that there is no definitive proof that mass screening “saves lives” or increases life expectancy for all men on average.

  9. Dear Woolly:

    I very deliberately did not go through this piece and point out all the things that I believe to be inaccurate. I believe that sometimes the reader needs to think for him- or herself. I have heard many of the statements in this piece before, but rarely have I seen them all lumped together in one place like this … and perhaps some other people would like to point out where they see inaccuracies. I carefully pointed out one.

  10. I really enjoy the New Prostate Cancer Infolink. It is a place to go to get science based information at the level of patient. A piece like this that comes in anonymously(why??), is just what I hear from many uninformed people who have a suggestion or opinion about my cancer. They also shop health food stores and have rarely read a peer-reviewed article.

    This was largely an anti-physician, anti-medicine piece and I take some personal offense. Just yesterday I was seen by two medical providers who “worked me in” on a day after a holiday and graciously gave me some much needed care for a problem.

    Proud to have been a physician for a career and happy to trust my current health care team who all practice evidence-based medicine.

  11. Like Allen, I see no value to in re-posting and thereby publicizing anything that is fraught with serious inaccuracies or falsehoods without annotation to both identify and correct those assertions. Just sayin’…

  12. When you post without pointing out every inaccuracy and mistake in drawing his conclusions, you are de facto giving it your imprimatur. It smells like the “fake news” we are increasingly seeing. I think you have a certain responsibility as editor to filter this kind of thing.

    If you wanted to post an article about the missteps in thinking that a patient may go through, why not just post a list of them (they are common enough) and your response to each?

  13. I have lived with prostate cancer for 11 years without any allopathic treatment and have done a great deal of reading about such treatments, their benefits and their consequences. In all this time, I have found no scientific evidence that there are any any net benefits to the standard treatments. The author of this submission obviously knows a great deal of what is really going on in the treatment business. His submission has a ring of truth to it whether he has made some mistakes in typing, spelling, grammar, facts or deviations from industry opinion. I think that he present an exceptional view of reality and I do not expect to see this comment published.

    Please establish some credibility by proving me wrong.

  14. Dear John:

    So I have done what you asked to “establish some credibility”. And there are actually very few posts to this web site that don’t get approved (which is, in part, why we published the article above). We can disagree with people while still respecting their right to have an opinion.

    Many, many men will live for years, if not decades, with low-risk forms of prostate cancer. No one on this web site is arguing against the benefits of careful monitoring (as opposed to immediate treatment) and lifestyle improvements for such men with low-risk prostate cancer. We have advocated for such forms of care in the appropriate categories of patient for most of the past 25 years. At nearly 70 years of age, I would need to be diagnosed with a very aggressive form of prostate cancer before I would seek immediate treatment — even though I probably have an additional, reasonable life expectancy of another 20+ years (based on genetics and the lifespans of most males in my family going back 200 or so years).

    However, where the author of the above submission is mistaken is in his (or her) failure to appreciate (a) that it can be extraordinarily difficult to establish exactly which men have the type of low-risk disease that can be monitored in this way using techniques like multiparametric MRI scanning and other tests (as opposed to annual biopsies) and (b) just how difficult it is for most men to “live with” the knowledge that they have any type of cancer.

    I know of numerous cases of men who have been strongly advised by their urologists and other specialists that treatment, for them, came with more risk than any risk presented by the cancer itself, but those men still insisted on getting early treatment. And at the other end of the scale, I know of many urologists who still believe — sincerely, if incorrectly — that the best way to manage any prostate cancer is to remove it. Our problem is twofold: continuing education of all concerned about advances in understanding about the differing management opportunities, and expanded awareness among society in general that “cancer” in general (and prostate cancer in particular) is far from being the inevitable death sentence that many of us grew up believing when most cancers were only being diagnosed after metastasis had occurred.

    Confusing the need for appropriate care and treatment for the individuals who need treatment with the idea that the majority of physicians are only interested in how much money they can make from their patients also doesn’t help to clarify a complex situation. Are there highly financially motivated physicians who I wouldn’t go near with a bargepole? Sure there are. But that isn’t true of all physicians. We live in a society that mistakenly believes it has “the best medical care in the world”. We quite certainly don’t. We have a healthcare system which is adversely impacted by its financial structure. And that quite certainly should motivate every patient to take greater care than many of us do in who we select as our clinical advisors.

    And if one gets diagnosed with higher-risk and metastatic forms of prostate cancer one needs the care that is available if one wants to have a chance at living out an extended life with good quality.

    The only sensible way to look at all of this is when we all start to realize that care must be individualized to the meet the needs of individual patients and their individual situations as opposed to trying to find black and white answers that can be applied to all patients (or all doctors). The latter is a futile game.

  15. Sitemaster,

    Bravo!! Clearly and succinctly addresses the controversy we all face in prostate cancer treatment (or not).

    Thanks for articulating and for pointing out the broken medical care system which impacts all of us.

  16. Thank you for posting this factually flawed letter (or rant) to a hypothetical elderly man with recently diagnosed prostate cancer outlining potential pitfalls in diagnosis and treatment.

    One possible good thing about the letter is that it might cause someone to stop and say to himself, “This prostate cancer subject sounds pretty complicated; maybe I need to get some more help deciding what is best for me and not immediately accept the first diagnosis and treatment recommendation without a lot of further study and reflection.”

    This site is to be congratulated for its recent awards and help for patients trying to get up to speed on prostate cancer which we know has a very steep learning curve and a lot of still unanswered questions.

    Thank for your continued effort to educate us via reviews of recent publications. Hopefully the New Year will bring some good news to this troublesome problem.

  17. I waited a couple days to respond this as the piece did make my blood boil a bit. For a lot of reasons. It reminded me of earlier this year when I had to experience this type of thinking first hand at the Mets and Cubs game in Las Vegas just before the season began.

    I was manning the “Ed Randall’s Fans for the Cure” table before the 1st pitch opportunity when a man approached me in full attack mode. “Why was I there?” “How much was I being paid?” His attitude was that I was part of a vast conspiracy with the FDA preventing cancer cures for profit. That all cancer was very curable already but curing cancer was not good business. He was shouting at me full volume when others stepped in and tried to help me. Finally the Metro police department stepped in to make him move on and go watch the game.

    I was just a volunteer trying to help promote prostate cancer awareness. I’ve done this now for 8 years with Ed’s group. No one at the FDA coerced me in any way. I was there to help a friend and fellow survivor get the word out.

    This article, in my opinion, embodies that level of stupidity. It was written by someone at least educated enough to look convincing that they know what most don’t know. He/she spent a lot of time concocting conclusions that are very opinionated and even dangerous to men that can be cured with treatment. I think the warning label for this piece needs to be a bit stronger. It reminds me of a goofball who regularly rants against the FDA and who runs a supplements company. For profit, of course.

  18. I read all of the comments on this article with a lot of interest, and perhaps like the whole dialogue on prostate cancer, find that I agree a bit with them all. It is true that there are many inaccuracies in the article; equally true that there were many truths. On balance, I am pleased that the Sitemaster choose to give this man a place to speak his truth — his taking the risk to comment on the incredibly complex issue of prostate cancer I think encourages others to also speak out. He risked being wrong and he said his piece anyway. His piece is at least as helpful to men dealing with prostate cancer as scholarly articles that many will find difficult to understand. I believe it is helpful for men and providers to hear lay points of view.

    Scholarly articles have limitations. So does this article. As a consumer of information on prostate cancer, I appreciate receiving a patients view as well as researchers and practitioners.

    Both are helpful in making my choices.

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