Advice for the Newly Diagnosed with Prostate Cancer

[updated February 28, 2014]

This post is intended to provide pointers to the information you need if you are newly diagnosed with prostate cancer. I found that there was so much information on the net that it took a great deal of time to winnow out the more useful material and hopefully this list provides it. Its based on nearly a year of writing prostate cancer posts on this blog and scanning the net for relevant materials. In some cases it points to other sites and in some cases it points to summaries on this site.

Favorable Outlook

Before reading further note that in most cases prostate cancer is not fatal. The first person ever to have nerve sparing radical prostatectomy is still alive 25 years later and, in fact, the number one killer of most prostate cancer patients is actually the same as the rest of the population: cardiovascular disease (CVD), not prostate cancer. Statistic on CVD taken from page 5 of the booklet, Promoting Wellness for Prostate Cancer Patients, 2007, by Mark Moyad (papers). Also see this January 2009 study [PMID: 19054189] and Medical New Today summary which found that for patients with Gleason Score 7 or less (59.1% of the patients) that survival was not substantially worse than men without prostate cancer. In [this PCRI weekly article] Dr. Mark Scholtz reports on a Journal of Urology study of 127,000 prostate cancer patients where it was found that:

1. For the whole group of 127,000 men, the prostate cancer mortality rate at 15 years was 10%.
2. Men in the best risk category (i.e. with only a small nodule palpable on digital rectal exam and a Gleason score of 7 or less - termed Group I) had a 5% chance for prostate cancer mortality at 15 years.
3. For men in the worst group with seminal vesicle invasion, lymph node metastasis or Gleason scores of 8 or above had a 27% risk of prostate cancer mortality at 15 years.

Although the statistics are generally much more favorable than for other cancers, it should still be noted that according to the American Cancer Society about 30,000 men died of prostate cancer in 2010 and according to the European Cancer Observatory about 70,000 men died of prostate cancer in 2008 so in total about one man dies every 5 minutes of prostate cancer in the US or EU. Thus prostate cancer should not be neglected and appropriate medical attention should be taken to minimize any risks.

Using the d'Amico risk categories this Mortality after prostatectomy figure and this Mortality after radiation treatment figure (click on them and note that there is a typo on the horizontal axis -- 100 years should read 10 years!) show highly favorable outcomes even in the high risk group. (Material cited is from [PMID: 16985915] [full text]. d'Amico (papers) is a professor at Harvard.) When treated with conservative therapy (watchful waiting or active surveillance) or androgen withdrawl Albertsen (papers) et al presented 20 year outcomes in [PMID: 15870412] [Full Text] summarized in this Mortality after conservative therapy or androgen withdrawl figure which classifies mortality by age and Gleason Score. This Yananow article Elephant in the Room by Terry Herbert has further statistics and information on outlook.

Note that these generally favorable statistics can hide the fact that there do exist aggressive cancers that need to be treated right away so its important to get a proper diagnosis from an experienced doctor right from the start and to take action without haste if the nature of the disease is aggressive. At the other end of the spectrum it is believed that many indolent cancers are unnecessarily treated as they will never endanger the patient in his lifetime. Thus "Not every prostate carcinoma identified early must be treated, but those that require therapy must be detected early!" [PMID: 18560799]. We have devoted an entire page to the discussion of various studies on waiting time from diagnosis to treatment to further elaborate on this point.

Treat or Not

Paul Mathew, M.D., (papers) an assistant professor in the Department of Genitourinary Medical Oncology at M. D. Anderson, cited “a very apt aphorism” by the late Willet Whitmore, Jr., M.D., (papers) of Memorial Sloan-Kettering Cancer Center in New York: “If cure is necessary, is it feasible? And if cure is feasible, is it necessary?” Dr. Mathew said that dichotomy frames the current view of localized prostate cancer. A 50-year-old patient with an aggressive type of prostate cancer is almost certain to die of his disease unless it is cured. “It’s clearly necessary,” he said, “but is it feasible? Do we have clear evidence that radical prostatectomy offers cure in a high-grade prostate cancer? Surprisingly, this is still a controversial area.” On the other hand, in an 80-year-old patient with a low-grade cancer, “If you remove his prostate, he’d be cured. But is it really necessary?” Such a patient might well live the rest of his life without experiencing significant problems related to the cancer. Paraphrasing Paul Kienow, the resolution to Whitmore's conundrum is that for low risk cancers just about any treatment option has a high cure rate whereas none do for high risk cancers. To evaluate those options, a patient’s risk of treatment failure is assessed on the basis of his PSA level, tumor stage, and combined Gleason score. Patients with a PSA level less than 10, a tumor stage of T2a (a small, palpable tumor confined to the gland) or lower, and a Gleason score of 6 or less are in the low-risk category, with an 80% or greater chance of long-term control. Those with a PSA level higher than 20, a tumor stage of T3 (outside of the gland) or higher, and a Gleason score of 8 or higher are in the high-risk category with less than a 50% chance of long-term control. All those in between are in the intermediate-risk group.
For patients whose life expectancy and comorbidities suggest that they are likely to die of something other than prostate cancer, cure is not considered necessary, so a strategy of watchful waiting is typically chosen. The patient’s PSA level is checked every four to six months and, as long as the cancer remains minimal, treatment remains unnecessary.
For younger patients or for those with more aggressive cancers, though, treatment is necessary, and several options are available. “And because, in many patients, we can’t truly say that one option is better than the others, it comes down to the patient’s decision,” Dr. Kuban (papers) said. (paragraphs from From OncoLog, December 2004, Vol. 49, No. 12)

Resources to Review

• North Carolina Prostate Cancer ColalitionThe NCPCC in conjunction with Dr. J. Moul has put together a set of materials for the newly diagnosed available [here]. These include [Newly Diagnosed Patient Workbook] and a set of [guidelines and other documents]
• Yananow. Review the advice for the newly diagnosed at Yananow, a site run by a prostate cancer patient with excellent material. (Another page for the newly diagnosed that readers may wish to review is one by US Too, an umbrella support group for prostate cancer patients.)
• Waiting. Read this post for a discussion on how long you can delay treatment after diagnosis.
• Doctors. Review this two part article on finding and selecting a doctor.
• Community Resources. Get leads on doctors by networking with friends and various community resources which include national, local and online support groups.
• Questions. Read the questions for your doctor and try to answer as many of them yourself as you can before speaking to the doctor by reviewing materials here.
• Basics. In the links to the right read the 4 articles listed under Basics. These are brief well written summaries of the main topics you need to know. They are written by a service that normally provides summaries of medical research to doctors but also provides these patient summaries for free as a service to patients. An excellent article summarizing the various guidelines for treating prostate cancer is the February 2008 review that appeared in Canadian Family Physician which you can read online [here]. Other online sources of basic material are listed in the Free Online Materials point later.
• Calculators. Go the calculators page and plug in your test results to calculate various prognoses.
• Treatment Alternatives.
  
  
  • Different Treatments. The following summary table is a slightly expanded version of Table 2 in the 2008 Canadian Journal of Urology paper [Full text] [PMID:18700060] by Mark LaSpina (papers) and Gabriel Hass (papers).

    Treatment	Advantages	Disadvantages
    Conservative treatment - Watchingful waiting - Active surveillance	Lowers risk of treatment-related complications	Can delay aggressive treatment for potentially curable disease Repeated biopsies can induce fibrosis making eventual nerve sparing treatment impossible as per Slide 11 of [Catalona 2009 NY AUA presentation].
    Radiation - External beam radiation Brachytherapy	Minimally invasive Reduces risk of surgical complications Option for poor surgical candidates	Cystitis Proctitis Gradual erectile dysfunction Fewer salvage options (surgery not commonly done after radiation) Takes longer to detect failure making salvage less effective as per slide 5 of [Scardino 2009 NY AUA presentation]
    Radical prostatectomy - Retropubic - Robotic/laparoscopic	Removes source of disease Radiation still available as salvage option if surgery fails Standard of care	Invasive Highest risk of morbidity and mortality Urinary incontinence or retention Delayed recovery of erectile function inguinal hernia
    Hormonal treatment - Androgen ablation - Orchiectomy	Noninvasive Options for poor surgical candidates	Recurrence is common Osteoporosis Symptoms si ilar to that of low testosterone Gynecomastia
    High-intensity focused ultrasound (HIFU)	Precise Minimall invasive Can be repeated	Unknown long term data
    Cyroablation	Minimally invasive Reduces risk f surgical complications Option for poor surgical candidates	More long term data needed Erectile dysfunction

    There is also a comparison of treatments [here]. Articles discussing the various treatment alternatives are as follows (and are also listed on the Treatments line under Links in the right margin): [Adj RT][AIPC] [Cryo] [Focal] [HIFU] [IMRT] [LND] [Particle] [RP] [RT] [Seeds] [WW] (table)
  • Common Practice Referring to the d'Amico risk categories discussed earlier on this page, Scott L. Sailer summarizes a common approach to treatment alternatives as follows:

    Radiation is a curative treatment for prostate cancer that is most appropriate for the older patient or the patient with significant co-morbidities. Younger patients with a greater than ten-year survival are probably best treated with surgery unless the disease is high risk. For all patients, high-risk disease is best treated with hormones and radiation. The long-term superiority of surgery over radiation, however, has not been demonstrated in randomized or retrospective studies, and the recommendation for surgery in the younger, healthy patient with favorable local disease is largely based on theoretical considerations. If chosen for appropriate indications and delivered with appropriate techniques, radiation can be delivered using external beam or brachytherapy with equal efficacy. The choice of radiation treatment is based on tumor characteristics and patient preference. Radiation can be used after prostatectomy to cure patients who are not cured with surgery. Watchful waiting may be appropriate for patients with low-risk disease. SL Sailer, NC Med J March/April 2006, 67(2) p. 152

    Dr. Cary Presant makes similar remarks and a set of videos by Dr. Gerald Chodak at Prostate Videos also take a similar approach. See this localized prostate cancer video, this locally advanced cancer video and this metastatic disease video and other videos at the site. The site author also has recently published the second edition of Winning the Battle Against Prostate Cancer.
  • AHRQ Report. A 187 page AHRQ (part of US government) report performed a systematic review of the medical research literature to compare the various treatment options. The reports itself, a short summary, an audio interview with investigator, a longer summary and a 2008 paper published Annals of Internal Medicine summarizing it are here (and are also in the Treatment Comparison line of the Links section in the right margin): [AHRQ Study] (short) (audio) (summary) (paper). Unfortunately the AHRQ report has few real conclusions and there is truly no objective way of making the important treatment decisions -- many boil down to personal preference -- nevertheless, it is the most authoritative source of treatment comparison information and we recommend that every reader interested in this topic review the cited links. (A February 26, 2008 article in the New York Times mentioned the inability to get patients to enroll in clinical trials and lack of success of prostate cancer advocacy as reasons for the insufficient data. Another problem is the significant delay in initiating a trial. See editorial in the December 2008 issue of Nature Clinical Practice Oncology [link].) Dr. Gerald Chodak discusses the type of evidence that is required to really be confident that one treatment is better than another in this [video].
  • Merglen 2007 Study. Merglen et al [PMID: 17923593] reviewed "all 844 patients having a diagnosis of localized prostate cancer between January 1, 1989, and December 31, 1998, in Geneva, Switzerland" and found that "ten-year specific survival was 83% (95% confidence interval [CI], 73%-93%), 75% (95% CI, 67%-83%), and 72% (95% CI, 66%-80%) for patients who underwent surgery, radiotherapy, and watchful waiting, respectively (P < .001)." However, since this was an observational rather than randomized study its possible that the surgery patients were healthier (as healthier patients are more likely to be streamed toward surgery) and the better results among the surgery patients may have been due to their superior health status or other selection bias rather than the treatment itself. Also there have been significant advancements in both surgery and radiation in the last 10 years which might invalidate such comparisons. Also there could be problems related to attribution of cause of death since death certificates are known to be unreliable. [PMID: 18574097] [extract]. Additional possible limitations appear in [PMID: 18775078] [Full Text]. Thus again we cannot really say with any certainty that on the basis of this study that one treatment is truly better than the other even though it might have, on the surface, seemed to favor surgery.
  • 2014 Swedish Study. An observational study of 34,515 men over 15 years (from 1996 to 2010) found that for men with metastatic prostate cancer survival was similar among the surgery and radiation groups; however, for men with non-metastatic prostate cancer survival was better among patients who had surgery relative to those who had had radiation (particularly among younger and healthier men). This is summarized in Fig. 2. [PMID: 24574496] [Full free text] Summary from 2 Minute Medicine
  • Side Effects. With respect to side effects Dr. Tanya B. Dorff (papers) says in a February 8, 2006 interview:

    the side effects discussion ... really comes down to a tradeoff between bowel toxicity - slightly more prevalent with radiation - and urinary toxicity, somewhat more likely with surgery. Impotence isn't part of the equation because that risk isn't decisively different between modalities. And of course, "I tell patients that most of them will not end up with these consequences, and their risk is minimised by going to a high-volume urologist and radiation oncologist."

    Note that when she refers to no consequences she intends to convey that most men will not be left incontinent or unable to have sex from surgery nor suffer permanent serious bowel problems; however, there are permanent lesser consequences in most cases such as slight leakages that did not occur before surgery but are generally controllable and do not necessitate a pad because the volume of leakage is very small and infrequent and there will likely be a need to use Viagra, Cialis, etc. to have sex after surgery. Also there will be a recovery time before continence and potency return. This 2012 paper: [PMID: 22358375] presents results consist with those discussed by Dorff.
  • Concurrent medical conditions. It is also worthwhile to consider other concurrent conditions that may exist. It has been estimated that about 20% of men have overt or subclinical hernias and surgery can repair these at the same time. Urinary obstruction, particularly common among men with large prostates, also tends to be cleared up by surgery according to a 2008 NEJM paper by Sanda et al. An August 2008 paper found that obesity was associated with PSA failure after surgery and external radiation but not after brachytherapy (seeds) suggesting that brachytherapy may be more advantageous for the obese. See [PMID: 18262732]. Patients with microvessel diseases such as diabetes are less tolerant of radiation. See separate post on Radiation Risks.
  • Others' Experiences. Aside from reading material on the treatments themselves reviewing the experience of other patients may help you make a decision. Particularly insightful discussions of why particular individuals chose specific treatment alternatives include this one by John V who chose surgery, this one by several doctors [PMID: 16902521][Full Text] whose patient chose surgery, this one by Andy Grove who chose radiation and Terry Herbert who has a web site on active surveillance/watchful waiting where this page summarizes why he chose it. A 2006 paper in the journal, Cancer, investigated the influence of emotion, misconception, and anecdote in making treatment decisions. See Figure 1 and 2 for patient quotes and Table 3 for patient misconceptions. [PMID: 16802287] [Full Text]
  • What are Others Choosing. In terms of what other people are choosing, according to Dr. Nelson Stone in this March 2008 Washington Post article "more than 60,000 prostate surgeries are performed in the U.S. each year and some 50,000 men receive implanted radiation. About 30,000 men will also undergo external radiation for prostate cancer".
• Deciding. Be aware that according to [2010 Archives of Internal Medicine paper] [sciencecentric article] [PMID: 20212180] "specialist visits relate strongly to prostate cancer treatment choices."` Those who visited a radiologist tend to choose radiation and those who visited a urologist tended to choose surgery, hormones or watchful waiting. The paper concludes that "in light of these findings, prior evidence that specialists prefer the modality they themselves deliver and the lack of conclusive comparative studies demonstrating superiority of one modality over another, it is essential to ensure that men have access to balanced information before choosing a particular therapy for prostate cancer." Thus you should visit doctors of each specialty to make a decision rather than rely on the advice of one from a single specialist.
• Free Online Materials. Go to the free downloads and free brochures pages and download and read a selection of excellent free information.
• Radiation Risks. Radiation risks from diagnostic imaging and radiation treatment are discussed on a separate page: Radiation Risks Associated with Prostate Cancer
• Books. The US Too support group sells A Primer on Prostate Cancer by Stephen B. Strum (papers) and Donna Pogliano and includes many extras all for less than the normal price of the book alone. The Primer began as a brief introductory article by Donna Pogliano and evolved into the present book which is widely regarded as the most in depth and best patient-oriented book among patient groups. Much of the information in the Primer can also be found in these PCRI papers. Patrick Walsh (papers) and Peter Scardino (papers) are two well known surgeons who have each written excellent inexpensive patient-oriented books focusing on prostate cancer surgery. Charles Myers is a medical oncologist who himself has prostate cancer and has written two books for patients on prostate cancer from the medical oncologist viewpoint. John Mulhall of Sloan Kettering has written a book specifically on ED and prostate cancer. Rudi Giuliani, former Mayor of New York City, has a chapter on how he decided to select radiation treatment in his book on Leadership. The books by Centeno, Onik (papers) and Kusler and another book by Onik [find reference] are the only ones we are aware of for patients written by a cryoablation specialist. Note that the background of the writer of a book may heavily influence the book so if you are considering different treatment options do not just read a book by a practitioner of one of those options. The book entitled Vigorobic by urologist Frank Sommer (papers) is the only book we are aware of that is devoted to ED exercises. Some of Sommer's information is online here. The second edition of Winning the Battle Against Prostate Cancer by Dr. Gerald Chodak (I have not read it) is also out. These books are not expensive ($10 - $25 each) but you may be able to save even that with a visit to the public library. Google for the library near you and then check its collection online so you know what is there before you go.
• Tests. Be sure to keep copies of all your tests including imaging so you can take them with you whenever you visit a doctor. Keep a diary of your PSA and other test results and medical meetings. To get an unbiased view you need to speak with a urologist (urologists do surgery), a radiation oncologist and medical oncologist (a medical oncologist treats cancer using drugs). Each specialty can have a bias toward its own methods so its best to arrange to get advice from all three. Having the test results will be essential for such visits. Here is a checklist of questions you may wish to ask about lab tests from the Canadian Society of Medical Laboratory Science. Also Lab Tests Online has useful information about many lab tests.
• Recovery. Read the articles on urinary incontinence (also progression) and ED. There are some additional statistics on recovery progression in the abstract of this paper: [PMID: 17919694].
• Surgery. If you decide to have surgery note that surgery can consist of up to three operations done at the same time: (1) the radical prostatectomy (4 part article) itself, (2) a Lymph Node Dissection to detect whether or not disease is confined and (3) a hernia repair to forestall hernia 1-2 years later due to pre-existing subclinical hernia or weakening of the tissues from the primary operation. Also be sure to read the Joe Price surgery checklist and the [surgical safety checklist]. One important recovery issue that is sometimes overlooked is that ED problems can not only arise from the surgery itself but some potential damage actually occurs in the weeks after the surgery rather than during it. This later damage, due to lack of oxygenation, may be preventable so prior to the surgery pre-arrange for a treatment session with an ED specialist within a few weeks after the surgery. There should not be too much delay on this if you want to prevent irreversible damage. See this two part article on ED after prostatectomy. Although many urologists do offer ED treatment or refer you to an ED specialist you cannot assume either of these steps will happen so pre-arrange for it prior to surgery. [PMID: 18042217]
• Nutrition. Read the nutrition downloads at the free downloads page. This 102 page free downloadable book: Challenging Prostrate Cancer written by a team of experts at Princess Margaret Hospital is one of the best single patient-oriented resources. Also see: Preventing Prostate Cancer, this UCSF Summary and this summary of the authoritative WCRF/AICR report. Also read the nutrition posts on this site.
• More. Read the web sites listed under Mega Sites to the right, explore the link collections to the right and read all the posts on this blog.
• Finding Information. Try to get your information from authoritative sources as would be found in the Medical Research point (next in this list) or the HON search engine which restricts sites found to those satisfying critera which increase the chance of the information being reliable. For example, consider this March 9, 2008 news item from the Herald Sun in Australia:

  ''the professor, has decided that I need to be operated on as soon as possible. It's gone past being able to have radiotherapy or chemo''.

  The idea that surgery can address more advanced cases than radiation and chemo is completely wrong. Why was he rushed into surgery without due consideration of the other medical alternatives? Why was this printed in the news media without checking the facts? Another example of misleading information is discussed in this article. US non-profit medical centers are not regulated as to what they can say in ads to the extent of drug companies and will make statements based on "data" that the FTC would never have allowed drug companies to make. For example, in a December 2009 NY Times article Natasha Singer writes:

  A print advertisement for prostate cancer surgery at Mount Sinai Medical Center in Manhattan is typical of the way many elite research and teaching hospitals sell hope to the public.
  
  "Our newest prostate specialist, ..., has pioneered a minimally invasive approach that allows him to retain the highest cancer cure rates with the lowest risk of side effects," says the ad.
  
  Highest cure rates. Lowest risk. What evidence does the medical center have to back up such superlatives?

  This doctor may be an excellent doctor, e.g. see [testimonial], but as the New York Times article goes on to say the claims in the ad are based on antecdotal remarks by patients. This represents a level of evidence that the FTC would never allow drug companies to use. On the other hand, non-profit medical centers can get away with claiming "highest cure rates" with virtually no evidence comparing the cure rate there and elsewhere.
  
  If you get your information from the news media and advertising you will be more likely to have to deal with misconceptions, misinformation and deceptive, misleading or wrong information. Any information you get from the news media and advertising should not be trusted and you should double check with authoritative sources. It may be based on ignorance, miscommunication or purposeful attempt to mislead in order to generate business for particular therapies, medical equipment or medical or pseudo-medical practitioners. News releases from major medical centers routinely neglect to include relevant items such as sample size The FDA attempts to regulate health care advertising but its a very difficult task. Unfortunately even papers in leading medical journals can be misleading. The abstract of a paper [PMID: 18801517] in the Journal of Urology (one of the top urology journals indicated that the relative risk of developing bladder cancer among those with external radiation for prostate cancer was 1.42 times that of the rest of the population, i.e. 42% higher; however, the risk of bladder cancer in the population is low so the absolute risk may only be a few percentage points. By only citing relative risks a very misleading impression is given even though the data presented may be accurate. See Radiation risks associated with Prostate Cancer for a better presentation. In PC Infolink the writer point out that the authors of the study were from a urology department (where surgery, not radiation, would be done) and wonders: "if a similar study carried out by members of a department of radiation oncology might have reached a different conclusion that emphasized the occurrence of erectile dysfunction and incontinence! Caveat emptor." Major medical centers routinely circulate news releases on highly limited human studies (uncontrolled interventions, small samples [< 30], surrogate primary outcomes or unpublished data) yet in a study of 40 such releases "58% lacked the relevant cautions". [PMID: 19414840] [Full Text]. Journalists then uncritically report on them.
• Medical Research. If you are interested in reading the medical literature directly rather than getting your information second hand note that abstracts of all medical research papers are freely available on pubmed and much is also available on Google Scholar. Read the post on pubmed front ends. It is important to distinguish among the different types of study. Randomized controlled trials are the best for application to patient situations whereas epidemiological studies are best used to generate hypotheses (rather than generate evidence) which randomized controlled studies can then attempt to verify in order to generate scientific evidence. A set of videos addressing the conventional wisdom of evidence-based medicine can be found on ProstateVideos; however, the situation is not actually so clear cut and as discussed in [PMID: 15717036] [Full Text] the value of randomized controlled trials may be over rated. In particular, the absence of randomized trials should not be confused or equated with the absence of evidence (something that presentations which attempt to "simplify" the situation often do). As the authors of one critique write:

  We are saying that a systematic review purporting to give an "evidence-based review" of the cardiovascular effects of n–3 fatty acids should not conflate an absence of well-controlled trials examining cardiovascular effects of ALA with an absence of evidence that ALA has any benefits for the cardiovascular system.[link]

  The Bradford Hill criteria are frequently applied in assessing research and will significantly help you distinguish useful from less useful research. This three part article discusses biases and why studies can and do come to wrong conclusions at times: [link]. A non-technical discussion of interpreting survival curves and medical statistics is available at [CancerGuide statistics] and other information on do-it-yourself research is also available at that site. Urology Times and Uro Today are two sites intended for urologists that you can read to get the latest in the field. The Webcasts listed to the right have full length lectures on various urology topics mostly intended for urologists. The Guidelines listed to the right are protocols or summaries intended for treating prostate cancer also aimed at practicing urologists. The book Statistical Evidence in Medical Trials by Stephen Simon has excellent non-technical coverage of how to understand medical research. It is intended for doctors to help them assess which advances to incorporate into their practice but its very easy to read by anyone. Simon's articles in the Journal of Andrology illustrate a portion of the material.