Newly diagnosed with PC? – read this thread first

We have a lot of collective wisdom at this site.   Let’s make a value-added list of posts with wisdom that newcomers might not be initially aware of, and help get them off to a great start on their “patient education” journey.  When we see a newcomer joining HW/PC, we can say, "Welcome!  Be sure to visit the thread called, 'Newly diagnosed with PC? — read this thread first.' " Let’s please avoid the goofy “posts about other posts” that don’t add value but consume space…let’s add to this thread only with information valuable to the PC newcomers in mind.   Also, let’s please avoid the posts that begin with “Well, in my case…” which becomes a post "all about you," because this thread is not intended to be about what you did or what your case was.   It’s intended to be a general  reference thread of information for the PC newcomers.  There are plenty of other threads to tell everyone all about you. Further to this same point, my message to the newcomers who will benefit from this thread in the future is that you can save your “thank you” replies for other threads because these types of messages will, similarly, clog the space in the thread.   Let’s keep the all the thread entries focused on the points newcomers may not be initially know about prostate cancer.   Added later as an edit:   I’ll say “you are welcome” here to all those who have emailed me an offline “thank you” for having created this thread... This thread has the potential to live on for a long time, and be referenced by many people in the future.   Let’s put our best foot forward.   Let’s see if we can turn this into some good…   IMPORTANT (although perhaps obvious) NOTE :  this is not "medical advice," and should not be a substitute for medical advice; it is merely a collection of learnings and information about PC which often takes a while to be educated about   I’ll get this started with a post which will help to guide future posts, and then you guys can help to carry this legacy forward .   Here we go...best foot forward...     Some of the tidbits of lessons learned/wisdom which may be added to this thread following this post will be intended for only one of these risk categories, others will be generic.   If it is going to be valuable for only one of the risk categories, it will be helpful to indicate which one.   For example, just say something like, “This input is for HIGH RISK men…”   SUMMARY:   Know your “risk category” Prostate cancer is really like two, or perhaps three, very different diseases.   The recommended treatments (or non-treatment recommendations) are based largely on the NCCN Clinical Guidelines .    Step #1 for all PC newcomers is to be able to answer the question, “What is your risk category?”     The NCCN “risk categories” are listed below: ·          HIGH RECURRENCE RISK o     PSA > 20 ng/mL o     and/or Gleason 8-10 o     and/or cT3 tumor   ·          INTERMEDIATE RECURRENCE RISK o     PSA between 10-20 ng/mL o     and/or Gleason = 7 o     and/or cT2b-c tumor   ·          LOW RECURRENCE RISK o     PSA < 10 ng/mL o     and Gleason < 7 o     and cT1-T2a tumor   ·          VERY LOW RECURRENCE RISK o     PSA < 10 ng/mL o     and Gleason < 7 o     and cT1c tumor o     and PSA density <0.15 o     and <3 biopsy cores positive, <=50% cancer in any core     Newly diagnosed?  What's your risk category?       Post Edited (Casey59) : 7/12/2013 2:57:26 PM (GMT-6)

SUMMARY:   When is a bone scan or CT scan appropriate (or not) for newly diagnosed men? This bullet is intended to describe why your urologist may NOT prescribe a routine bone scan or CT scan immediately following your diagnosis…even though he/she may have prescribed a scan for another patient with a different case.   In the era when a large number of today’s urologists were being trained (figure about 15-20 years ago as typical), the initial staging of patients at the time of diagnosis of PC was frequently HIGH-RISK or INTERMEDIATE-RISK.   Many men of this era were diagnosed following a visit to their urologist to investigate symptoms which ended up being rooted in advanced PC...by the time symptoms appeared, the case was clearly “advanced.”   Bone scans and/or CT scan were, therefore, appropriately prescribed on a routine basis by urologists of that era to check the extent of metastasis, which most patients had at the time of initial presentation (checking for “mets” is the purpose of the bone/CT scans, and men diagnosed with advanced PC will be reoccurringly scheduled for scans to track & measure “met” progression).   Today, the prevalence of PSA testing has resulted in a “stage migration” downward, and the typical newly diagnosed PC patient is VERY LOW-RISK, LOW-RISK or INTERMEDIATE-RISK, and instances of mets in these cases is remote.   The habits of urologists to routinely prescribe scans has, however, lingered into the new era.   The standard-setting body of the practicing urologists in the US, the AUA, has observed that scans were still generally prescribed for all new PC patients, but that a smaller and smaller percentage of the newly diagnosed population were actually found to have mets.   Researchers at the Univ of Chicago Medical Center and Dana-Farber Cancer Institute estimated that the total annual cost of over-prescribed but unneeded testing is about $35 million every year in prostate cancer alone.   As a result, the AUA updated its “Best Practices” Guideline for urologists to follow, and divided the population of newly diagnosed PC patients into two groups—those for whom a routine scan is appropriate to prescribe, and those for whom a routine scan is not appropriate to prescribe because they are almost certain to be negative.   Summarizing the “Best Practices” Guideline: o     Routine use of a bone scan is not required for staging asymptomatic men (no symptoms) with clinically localized PC when their PSA level is equal to or less than 20 ng/mL. o     CT scans may be considered for the staging of men with high-risk clinically localized PC when the PSA is greater than 20 ng/mL or when locally advanced or when the Gleason score is greater or equal to 8.   For additional clarity, there are some individuals with case exceptions for whom staging scans may be appropriate even though they appear to not meet the descript ions above, and it is important that the urologist treat each case individually.     The “Best Practices” Guideline is available as a free PDF download from the AUA website ( HERE ), and is an excellent source if information for PC newcomers of all risk levels.           Added as an edit in July 2013…   The AUA feels so strongly about the over-prescript ion of bone scans and CT scans by practicing clinicians for LOW-RISK patients that it is listed as the #1 item in their new publication, “ Choose Wisely—Five Things Physicians and Patients Should Question .”         Post Edited (Casey59) : 7/25/2013 9:03:34 AM (GMT-6)

  SUMMARY:   Considering surgery?   Be aware that there is a well-known “learning curve” for the complicated radical prostatectomy (RP) procedure.   How many radical prostatectomies has your surgeon performed?   Ask him (or her).   This post addresses the importance of finding a highly experienced surgeon for treatment.   This posting is primarily for INTERMEDIATE-RISK cases, although it might be applicable to some LOW-RISK cases, and also some HIGH-RISK cases, for different reasons.   Generalizing , HIGH-RISK cases are most frequently recommended to follow a multimodal RT/HT (radiation therapy/hormone therapy) treatment plan (although some cases include surgical “de-bulking” of tumors), and LOW-RISK cases are the best candidates for pursuing an Active Surveillance plan (also see Dr Walsh’s quote on surgery for LOW-RISK patients, below).   INTERMEDIATE-RISK cases, today, are typically treated with either surgery or radiation therapy. Surgery is the most common treatment mode today for INTERMEDIATE-RISK PC patients, with nearly 100,000 procedures (radical prostatectomy, or RP) performed each year in the US; approximately 75% of those RPs are minimally invasive and “robotically assisted” using the da Vinci surgical system robot. In the last decade, there has been a dramatic growth in the availability of robotic surgery.   The robotic systems were initially only available at high-volume major medical centers which attracted patients from a wide geographical radius, but today many local low-volume Community Hospitals have funded a robotic system and they are scheduling a broad range of procedures (from RPs, to heart surgery, kidney surgery, and many others).   The issue presented in this post, which may not be immediately or intuitively obvious to the newly diagnosed patient, is that multiple “learning curve” studies have been conducted with surgeons performing robotically-assisted RPs which demonstrated that a higher level of surgical proficiency and skill which is achieved over time and after performing many procedures .   Naturally, no two studies have the exact same outcome, but the lowest typically reported “learning curve” (that point at which the rate of improvement slows dramatically) is 250 procedures.   Other studies have reported higher minimums.   A relatively small number of surgeons perform a large number of procedures (only 1.8% of urologists perform 50 cases or more per year).   The typical major treatment centers in larger metropolitan areas of the US will typically have mulitple surgeons with more than 1,000 surgeries experience.  Conversely, a relatively large number of surgeons perform a small number of annual procedures (82% of urologists perform less than 10 cases per year).   At that low rate, many will never reach the plateau of learning in their surgical career. Examining outcomes of large populations of men, operations performed by surgeons during their learning process result in longer operating room time (it took longer to try to “get it right”) and less optimal outcomes (didn’t “get it right” as often, for both cancer-control and side effects). This post is NOT a promotion or recommendation for any particular method of treatment or for any particular practicitioner; but the discussion focuses on the recognition that robotic surgery is the most commonly selected treatment mode for INTERMEDIATE-RISK patients in the US.   More robotic RP surgeries were performed in the US than all modes of radiation therapy for PC combined. While the discussion has focused primarily on robotically assisted RP, which has been most widely studied, but it is acknowledged that the “ open surgery” technique has a similar learning curve.   For example, Dr Patrick Walsh, who perfected nerve-sparing open surgery techniques widely used today was quoted at the AUA 2010 Panel Discussion on LOW-RISK PC as saying, “ If you are going to have an unnecessary operation, it is important that you do it well .” Regarding RT, many have commented about the similar importance of having an experienced radiation oncologist, if radiation is the chosen treatment plan…although I am not familiar with any similar “learning curve” studies for RT.   Anecdotally, we have seen plenty of issues reported here at HW caused by something going awry with RT. All the discussion in this post is from the big picture perspective , studying large populations of outcomes.   This does not mean that any individual who selects a less experienced surgeon will always have a less optimal outcome; nor does it mean that someone who selects a more experienced surgeon will always have a more optimal outcome.   It simply means that the risk (the probability) of a more favorable outcome is better with an experienced surgeon.   There will always be anecdotal situations on both sides of the coin…but with this knowledge you can help to “ stack the odds in your favor .”   Newly diagnosed and considering surgery?  Choose an experienced practicitioner for PC treatment.  Before signing-up for surgery, ask them how many procedures they have performed.       Data taken from this interesting article from the Journal of Urology:   “Low annual caseloads of US surgeons conducting radical prostatectomy.”   LINK       Post Edited (Casey59) : 3/1/2013 2:54:52 PM (GMT-7)

SUMMARY:   Clinical Trials—what are they? If you are a PC newcomer and have never previously dealt with a major medical issue, then you probably have no idea what a Clinical Trial is.   This posting will give you plenty of info to get you started.   Before you start any treatment, it might be worth looking into whether you are eligible to receive a higher level of care through a Clinical Trial…   This posting is appropriate for all newly diagnosed men, regardless of which risk category you are in (HIGH-RISK, INTERMEDIATE-RISK or LOW-RISK).         What is a Clinical Trial?    A clinical study involves research using human volunteers (also called participants) that is intended to add to medical knowledge. Participants receive specific interventions according to the research plan created by the investigators.   These interventions may be medical products, such as drugs or devices; procedures; or changes to participants' behavior, for example, diet. Clinical trials may compare a new medical approach to a standard one that is already available or to a placebo that contains no active ingredients or to no intervention.   The investigators try to determine the safety and efficacy of the intervention by measuring certain outcomes in the participants — their disease or condition, how they react to the treatment, and potential side effects, which will be monitored.   Who conducts Clinical Trials ?   Every clinical study is led by a principal investigator, who is often a medical doctor. Clinical studies also have a research team that may include doctors, nurses, social workers, and other health care professionals.   Clinical studies can be sponsored, or funded, by pharmaceutical companies, academic medical centers, voluntary groups, and other organizations, in addition to Federal agencies such as the National Institutes of Health, U.S. Department of Defense, and U.S. Department of Veterans Affairs. Physicians, health care providers, and other individuals can also sponsor clinical research.   Are Clinical Trials only for advanced cases?   No, definitely not, although it is true that most trials for new drugs are for advanced, HIGH-RISK cases.   A sampling of Clinical Trials which are currently recruiting for INTERMEDIATE-RISK or LOW-RISK men with PC include (but not limited to) these Trial titles (from open" rel=nofollow target=_blank> clinicaltrials.gov ): ·          Diet in Altering Disease Progression in patients with PC on ACTIVE SURVEILLANCE (AS) ·          AS for cancer of the Prostate (ASCaP) ·          AS in PC ·          Shared decision making in LOW-RISK PC ·          Study of Antioxidants on prostate tumors in men undergoing RP for PC ·          Quality of Life Study for PC patients ·          Guided biopsy for mapping PC ·          MRI in Diagnosing PC ·          Impact of F-18 PTE/CT and MR Imaging in Management of Primary PC ·          Anxiety in men with PC ·          Efficacy and safety study of TOOKAD Soluble for localized PC compared to AS ·          HIFU in treating patients with localized PC ·          Stereotactic Hypofractionated Radiosurgery for Early Stage PC   What are the benefits of participating in a Clinical Trial?   The key benefit is the opportunity to receive the latest and best treatment available.   Patients receive either the best standard treatment (control group) or an additional treatment (test group) that may be more effective (and not generally available to others).   People who enroll in these studies often get more frequent oversight & follow-up from doctors.     Tell me more about the use of placebos.   A placebo-controlled trial compares a new treatment with a placebo; people who receive a placebo are in the control group. The use of placebos in cancer clinical trials is generally rare, but is an important component of the new “targeted” drugs being developed for prostate cancer so that researchers can tell whether stabilization of the tumor growth is an effect of the treatment or just reflects the natural behavior of the tumor.   Is it easy or difficult to enter a Clinical Trial?   “Both” is probably the best answer.   80% of clinical trials fail to enroll the required number of patients on time, so many are looking for patients.   On the other hand, the medical criteria is usually very strict because a valid scientific conclusion can only be reached if all the patients have similar medical conditions/requirements.   Where can I find more information on Clinical Trials? ·          ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. ·          American Society of Clinical Oncology (ASCO) article -cancer/cancernet-feature-articles/treatments-tests-and-procedures/asco-expert-corner-placebos-cancer-clinical-trials" rel=nofollow target=_blank> “ASCO Expert Corner:   Placebos in Cancer Clinical Trials”   Post Edited (Casey59) : 3/8/2013 8:56:16 AM (GMT-7)

Casey - Hope you don't mind me adding to this excellent thread for newbies: 

A "10,000 Foot View" from the Prostate Cancer Foundation:

This section summarizes key points to consider when you’ve been diagnosed with early-stage prostate cancer. The list is by no means exhaustive, and there might be other points that you want to think about as well. The goal is to help you focus on what you need to know about each stage of disease so you can hold meaningful, regular dialogues with all members of your health care team as you find the treatment path that’s right for you.

1.The Gleason grading scale runs from 1 to 5, where 1 represents cells that are very nearly normal, and 5 represents cells that don’t look or act much like normal prostate cells at all. The Gleason score, or sum of the two most common Gleason grades (and therefore on a scale from 2 to 10), tends to predict the aggressiveness of the disease and how it will behave in your body. Tumors with higher Gleason scores, typically above 7, tend to be more aggressive.

2.The PSA level that you had before you were diagnosed with prostate cancer, known as your pre-diagnostic PSA, is often used as an indicator of how advanced your cancer was before it was detected. Usually, the higher the PSA, the more aggressive the disease. Also, the more rapidly the PSA has risen in the year prior to diagnosis and treatment, the more aggressive the disease.

3.Nomograms are simplified charts that have been specially constructed to weigh different contributing factors and to provide a single assessment of the likelihood of remaining disease-free after treatment. They can play an important role in helping to decide whether to undergo additional treatments or whether to enroll in clinical trials assessing new therapeutic regimens or agents. One useful (there are many) nomogram webpage is found through Memorial Sloan-Kettering Cancer Center: http://www.mskcc.org/mskcc/html/10088.cfm.

4.Active surveillance might be appropriate for men who, for one reason or another, have decided not to undergo immediate surgery or radiation therapy based on his age, risk with surgery, and prostate cancer risk group. For example, immediate treatment might not make sense for men who have very slow growing or very early cancers, or in men who have a limited life expectancy (<10 years), while men who have other serious medical conditions might not be healthy enough to undergo surgery or radiation therapy.

5.During prostatectomy, the prostate and nearby seminal vesicles are removed. If performed laparoscopically or robotically, a few small incisions are made and blood loss is typically minimized. However, the procedure is technically difficult and the learning curve is steep. Surgical skill and practice with this approach is key. Ask your doctor about their surgical volume and years of experience. Currently there is little data to claim that robotic procedures offer advantages over the more traditional open radical prostatectomy, and in either case, it depends on experience.

6.If you decide on surgery, the decision on whether to attempt a nerve-sparing procedure should be yours—only you can know how important it is to maintain your erectile function. But ultimately the decision on whether to perform the nerve-sparing procedure is up to the surgeon based on his or her years of experience and expert clinical judgment. If the surgeon does not feel that he or she can cure your cancer and leave the nerves intact, the nerves will not be spared.

7.The goal of radiation therapy is to kill the prostate cancer cells where they live. To accomplish this, very high doses of x-rays are delivered to the prostate, concentrated on the small clusters of tumor cells that comprise the cancer within the prostate gland. Ask your radiation doctor about the dose of radiation, how many fractions will be given, and whether testosterone lowering therapy is needed to make the radiation work better. There are different forms of external radiation, including intensity modulated radiation therapy (IMRT) and proton beam therapy. Currently there is little data to suggest that proton beam therapy offers a real advantage over more traditional radiation. Technology is improving constantly, with the addition of special markers to track the prostate in real time during the radiation therapy, 3-dimensional CT scan planning to guide the radiation dose, and hormonal therapies which can increase the chances for some men that radiation will cure them. The decision to use hormonal therapy with radiation is based on your overall health and prostate cancer risk. Some men will get 6 months of testosterone lowering therapy, and some men will get several years of this additional therapy. Typically hormonal therapies are started before radiation, continued during radiation, and completed after radiation.

8.The most common type of radiation therapy is external beam radiotherapy. Radiation oncologists and technicians use CT scans and MRIs to map out the location of the tumor cells, and x-rays are targeted to those areas. With brachytherapy, tiny metal pellets containing radioactive iodine or palladium are inserted into the prostate. Over the course of several months, the seeds give off radiation to the immediate surrounding area, killing the prostate cancer cells.

9.A number of studies have shown that the use of neoadjuvant (before and during radiation) hormone therapy can shrink larger tumors, thereby making it easier for oncologists to localize the radiation needed to kill the tumor cells, and significantly improving outcomes. This approach is now used in many institutions for men with high-grade or bulky cancers and you should ask your doctor if this is indicated for you (see above).

10.The three most significant clinical factors used to determine which initial therapy might be best are the extent of your tumor, your overall health, and your age. Psychological factors can also play an important role: only you can know how you want to deal with your disease and whether the potential side effects of one treatment outweigh those of another.

11.Technique plays an important role in determining whether urinary control and function will be maintained after surgery, and sparing the urinary sphincter is key. But pre-surgical urinary function can play an important role as well. If you’ve already experienced some hesitation and/or lack of bladder control, it will be harder for you to regain full control and function.

12.During prostatectomy, damage to the rectum is rare, and the bowel changes seen in the first few weeks following surgery are more likely the result of the body adjusting to the increased abdominal space with the loss of the prostate. Radiation therapy, however, can cause significant damage to the rectum, resulting in diarrhea or frequent stools; fecal incontinence or the inability to control bowel movements; and/or rectal bleeding. Much depends on practitioner skill, so be sure to select a doctor who possesses the experience and skill to spare the rectal tissue as much as possible.

13.Regardless of whether the nerves were spared during surgery or whether the most precise dose planning was used during radiation therapy, nearly all men will experience some erectile dysfunction for the first few months after treatment. However, within one to two years after treatment, nearly all men with intact nerves will see a substantial improvement. However, some men never quite recover the sexual function that they had prior to surgery or radiation, and require assistance with pills, shots, or implants for successful sexual intercourse.

14.Despite the best efforts of surgeons and radiation oncologists, it is nearly impossible for a man to retain his ability to father children through sexual intercourse after undergoing localized treatment for prostate cancer. For men who wish to father children after surgery or radiation therapy, the best chance for fertility is sperm banking; after thawing the frozen semen, up to 50% of sperm will regenerate and can be used for artificial insemination.

15.Dietary and lifestyle changes should be an important part of every man’s battle with prostate cancer, complementing any drug therapy, surgery, and/or radiation treatment that you might undergo. Eating healthier foods, avoiding smoking, prevention of obesity, and exercising more will help keep your body strong to help fight off your disease.

 

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55 yrs old, excellent health - DX'd with PCa July '12
PSA 5.8
Biopsy 6/27/12
9 of 12 Gleason: 3+3 <5%, 3+3 <5%, 3+3 <5%, 3+3 <5%, 3+4 5-10%, 3+4 <5%, 3+4 5-10%, 3+4 30-40%, 3+4 15-20% (All neg perineural invasion)
Negative DRE’s / NO / MO / T1C / Gland size 40gm / Vol. 22gm
Volume Study 8/14/12
Casodex 50mg daily, 5 wks prior, 2 wks post BT
LDR BT on 9/21/12 – no issues
3 mo PSA 12/20 0.48!

Many newly diagnosed men come to HealingWell looking for information.   This thread contains information from solid resources which helps men get off to a great start on their “patient education” journey.   Back in Dec 2011 ( HERE ), an outstanding list of links (with an accompanying brief, helpful explanation of each) was published here at HW/PC and was very well received by forum members.   Site limitations prevented all the links from being added to the HW Welcome Page, so they have been updated and pasted here.   The links provided here range from some being relevant only to high-risk men, to others being relevant only to low-risk men, and to others being relevant to all newly diagnosed men with PC…let the brief, helpful explanation be your guide.  ------------------------------------------------------------------------------ Important PC resources: 1.     National Cancer Institute (NCI)-designated Cancer Centers – Best-in-class cancer care.   List of the 67 leading US cancer treatment facilities which demonstrate depth of scientific leadership, resources and capabilities in laboratory and clinical sciences, with a transdisciplinary research approach.   Of the 67 NCI-designated cancer centers, 41 are “Comprehensive Cancer Centers” which also carry out professional and public education programs…the CCC’s are where the experts went to learn.   2.     NCCN Prostate Cancer Clinical Practice Guidelines in Oncology – consensus comprehensive “roadmap” of currently accepted approaches to PC treatment, published by the N ational C omprehensive C ancer N etwork, in free downloadable pdf format; updated 2010.   Also, see the patient-centric NCCN Guidelines for (Prostate Cancer) Patients , free, downloadable in a reader, and printable; updated 2013.   3.     AUA’s Prostate-Specific Antigen Best Practice Statement – resource for physicians & patients describing PSA and PSA test results published by A merican U rological A ssociation, in free downloadable pdf format; now available in the 2013 Revision.   4.     PCRI’s “Diet, Vitamins & Exercise for Prostate Cancer” – high-level brochure published by the P rostate C ancer R esearch I nstitute promoting lifestyle changes for PC patients which “ don’t feed the cancer ,” in free downloadable pdf format.   5.     “ Nutrition & Prostate Cancer ” – detailed treatise by nutritionist specializing in PC addressing the scientific evidence, and resultant recommendations, that differences in diet and lifestyle may account in large part for the variability in PC, published by Helen Diller Family Comprehensive Cancer Center at UCSF, in free downloadable pdf format; revised 2009.   6.     PCF’s “Nutrition, Exercise and Prostate Cancer” – information for men based on studies that lifestyle (especially nutrition & exercise) has a significant influence on PC prevention & treatment published by the P rostate C ancer F oundation, in free downloadable pdf format; published 2009.     7.     Free online patient education material on Active Surveillance from several leading institutions: a.      “Active Surveillance for Prostate Cancer,” published by Univ of California at San Francisco b.     “Active Surveillance for Prostate Cancer:   What a man needs to know before deciding on treatment,” published by the James Buchanan Brady Urological Institute at Johns Hopkins   8.     PubMed – millions of searchable citations for biomedical literature available free, online and provided at taxpayer expense by the US National Library of Medicine, National Institutes of Health.   9.     clinicaltrials.gov – searchable free, online registry and results database of federally and privately supported clinical trials conducted in the US and around the world, administered as a service of the US National Institutes of Health.   10.   Nomograms – free online outcome prediction of risk based on individually variable case characteristics: a.      Memorial Sloan-Kettering Cancer Center Prostate Cancer Nomograms (includes PSADT calculator) b.     Cleveland Clinic Risk Calculators   11.   Hormone-Refractory Prostate Cancer Association, Inc. patient web site – www.hrpca.org   12.   AUA’s “The Management of Localized Prostate Cancer Patient Guide” – overview and recommendations from the Prostate Cancer Clinical Guideline Panel of the A merican U rological A ssociation about how to make a treatment decision, includes four individual factors (my cancer’s characteristics, my overall health, my life expectancy/age, my personal values), in free downloadable pdf format.   13.   PCI's "I Have Prostate Cancer, Now What?" — P rostate C ancer I nstitute website article with actionable first "next steps" for newly diagnosed men with PC.  Includes recommendations on 2nd opinion, maintaining medical records, making immediate lifestyle changes to maximize protection and other suggestions on how to be an informed patient.   14.   National Proactive Surveillance Network website.  Site created in collaboration with the Prostate Cancer Foundation for the active management of Prostate Cancer in patients who qualify for this non-intervening management program.  Launched 2011.   15.   “Ask Dr. Myers” video library — Dr Charles “Snuffy” Myers is one of the world’s leading medical oncologists, specializing in treating advanced prostate cancer.   On a nearly weekly basis, Dr Myers publishes a free online video segment of interest to men with PC titled “Ask Dr. Myers.”     16.   The “NEW” Prostate Cancer InfoLink — An almost-daily posting of the latest-and-greatest (and not so great) news across the spectrum of PC issues.   Outstanding layperson’s review and analysis of important journal postings.   Fantastic “Search” function.      Note :  links come-and-go...best efforts will be made to keep these links current Post Edited (Casey59) : 8/30/2013 7:47:11 AM (GMT-6)

My "What do to ask your Brachy/LAPR doc" lists might not warrant membership on Casey's list, but I think they are valuable to new folks. So, I'm posting this reply so anyone who needs them can find them in my signature below.

-Gedman

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41y. Wife + 5 young kids.
DX 1/28/13: PSA 9, BX G3+4 (5 of 12 cores)
RALP 4/3/13 w/ Dr. Tewari
Nerves spared, T2c, N0, G4+3, tumor 10%, organ confined, -margins, -EPE, -SVI, +PNI
Full continence
Using pump+pills+bimix for ED rehab
about me: Intro / Plan / Surgery Recap / Pathology Report / PSA History

I recommend these links for anyone newly diagnosed with PCa:
NCCN Prostate Cancer online book (PDF download version)
Questions to ask a Robotic PCa surgeon
Questions to ask a Brachytherapy radiation seeds specialist

Excellent addition to this thread, Tud. I agree 100% on all 6 of your points. Couldn't imagine anyone not feeling that all six would help their odds, or as Casey says often, "stacking the odds in your favor", or something like that.

AS should begin to look like a very sensible alternative to any of the invasive treatments, especially to anyone with a low-grade "entry level" cancer.

Our combined histories here at HW PC are chocked full of negative stories from side effects, complications, set-back, etc, from those of us that underwent invasive primary and/or secondary treatments.

If there is any way for a man to sensibly avoid going through that, in my opinion, it should be on the top of their list for consideration.

david

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Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

If you fit the criteria for AS, you owe it to yourself to try to calm down over the initial shock of a cancer diagnosis and take the necessary time to thoroughly explore your options. I would say that it takes a year to both calm down and properly inform yourself - there is no big rush for low-risk patients. Read every book you can on the subject, research the studies and check out the resources and websites listed on this site. Then after that time, go with the option that suits you best, whether that be more conventional treatment or AS.

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B-year: 1959 PSA ~7.4
-1Biopsy: 2011; 2/12 positive, G6(3+3), both 30% T1c
-2012 Tesla 3 MRI - no nodules or progression outside prostate.
-2nd biopsy 2 /10 positive, G6, 40 & 70%
-3rd Biopsy July 2013 3/13 positive, G6, 1%, 5%, 40%
Active surveillance; following Ornish/Michael Milken-style diet

Post Edited (Dreamerboy) : 8/1/2013 4:27:34 PM (GMT-6)

I will delete this message shortly so that Casey can maintain the flow of this thread.

In all my years here at HW this is probably the best effort I have seen to proved useful information for the newly diagnosed.

Casey, thank you so much for your effort here. Peter has responded a request to make this the introductory thread for our well known Prostate Cancer forum by making it a sticky that will always remain on top of this great website..

Nice Effort!

Tony

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Advanced Prostate Cancer Survivor
Patient Advocate and Support Group Leader

Not a medical professional!!!

Our friend Gedman has several very useful links in his signature that provide excellent info for newly diagnosed patients:

1. NCCN Guidelnes for PCa Patients. www.nccn.org/patients/guidelines/prostate/index.html

2. Questions to Ask Your Surgeon. www.healingwell.com/community/default.aspx?f=35&m=2637622#m2647572

3. Questions to Ask Your Brachytherapist. www.healingwell.com/community/default.aspx?f=35&m=2637621#m2638860

Thanks to Gedman for these excellent resources.

Jim

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Forum Moderator-Prostate Cancer. Age 62 (66 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally as of 7/13/13. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4 yr: .2. My docs are "delighted"! My journey:
https://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1

Gedman posted this valuable information on another thread. It's definitely worth including in this sticky:

What you should know about Peryonie's Disease

Peyronie's Disease is an unexplained scar formation in the penis, which typically causes unusual curvature and shrinkage. This condition occurs in 3% (some research indicates as much at 9%) of the healthy male population. However, Peyronie's occurs in 15% of men who have had prostate surgery.

This condition can make erections painful and intercourse nearly impossible (depending on the amount of curvature). As you can imagine, this can take a toll on a man's ego and lead to emotional stress.

It is unknown what causes Peyronie's or why men who have undergone prostate surgery are more likely to develop this condition. Note that Dr. Mulhall feels strongly that erection injections (such as bimix/trimix) do not cause Peyronie's.

Treatment options vary. In December 2013, the FDA announced approval of Xiaflex injections to treat Peyronie's in men with curvature of 30 degrees or more. Dr. Levine and Dr. Mulhall also use traction/stretching therapy to correct curvature and shrinkage, based on Dr. Levine's published research. (Other research on traction therapy here.) Other treatment options are also available to address the curvature/shrinkage, but there is no known cure at this time.

Most Urologists have little experience (or none at all) diagnosing and treating Peyronie's. It is very important that anyone experiencing penile curvature after prostate surgery get treatment from a doctor who knows how to diagnose and treat this condition. The two of the best Peyronie's doctors in the world are Dr. John Mulhall in New York City and Dr. Laurence Levine in Chicago. If you can't see one of them, then should should see a doctor recommended by the Peyronie's Association. (Dr. Mulhall and Dr. Levine are on the board of the Peyronie's Association and are involved in the creation of that list.)

For more information:

• Visit the Peyronie's Association website for lots of useful information, and a forum.
  
• Read Dr. Levine's book Understanding Peyronie's Disease. It is the only book written for patients to understand the disease and treatment options.
  
• Read Dr. Mulhall's book Saving Your Sex Life A Guide for Men with Prostate Cancer. Peyronie's disease is covered in Chapter 8, Section IV.

-Gedman
I recommend these links for anyone newly diagnosed with PCa:
- NCCN Prostate Cancer online book (PDF download version)
- Questions to ask a Robotic PCa surgeon and/or a Brachytherapy radiation seeds specialist
- Dr. John Mulhall's excellent book and YouTube videos (I, II, III) on ED due to PCa
- What you should know about Peyronie's Disease
Post Edited (gedman) : 2/26/2014 7:16:11 AM (GMT-7)

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Forum Moderator-Prostate Cancer. Age 62 (66 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally as of 7/13/13. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4 yr: .2. My docs are "delighted"! My journey:
https://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1

Post Edited (Tudpock18) : 2/27/2014 10:27:06 AM (GMT-7)

Tall Allen has compiled some excellent questions for patients to ask if they are consulting with doctors about HDR Brachytherapy, LDR Brachytherapy and SBRT. These questions are presented below. Thank you Allen! (just added the other questions that Allen prepared)

Jim

SBRT doctor questions

1. How many have you performed?
2. How has your practice of SBRT changed over the years?
3. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?
4. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
5. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
6. What is the margin you will treat around the prostate? Is it less on the rectal side?
7. What is the prescribed dose to the planned target volume?
8. Do you work off a fused MRI/CT scan?
9. What machine do you use (e.g., VMAT, CyberKnife, step-and-shoot, Tomotherapy, etc.)?
• If CyberKnife: Do you use the IRIS or a new multileaf collimator?
• Do you set a limit on “hot spots”?
10. Do you use fiducials or Calypso transponders? Do you do transperineal placement of them?
o What system do you use for inter-fractional tracking?
o What system do you use for intra-fractional tracking?
11. In my treatment plan, what do you identify as “organs at risk” and what dose constraints do you put on them?
o What dose will my penile bulb receive?
12. How long does each treatment take?
13. How will I be immobilized during each treatment?
14. Are there any bowel prep or dietary requirements?
15. Should I avoid taking antioxidant supplements during treatment?
16. In your practice, among men who were fully potent, what percent remained fully potent 3-5 years later?
o Have any men retained some ability to produce semen?
o What is your opinion of taking Viagra preventatively?
17. Do you monitor side effects with the EPIC questionnaire?
o In your practice, what percent of men experience acute urinary side effects?
o In your practice, what percent of men experience acute rectal side effects?
o In your practice, what percent of men experience late term urinary side effects?
o In your practice, what percent of men experience late term rectal side effects?
18. What kind of PSA pattern should I expect following treatment?
19. What is the median PSA nadir you are seeing in your practice, and how long does it take to reach that, on the average?
20. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local SBRT failure, and was that focal or whole gland?
21. Are you open to email communications between us?

HDR Brachy monotherapies doctor questions

1. I assume we are talking about monotherapy only, without external beam radiation or hormone therapy – is that correct for my case?
2. How many monotherapies have you performed? How many combined with external beam?
3. How has your practice of HDR brachy changed over the years?
4. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?
5. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
6. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
7. What is the margin you will treat around the prostate? Is it less on the rectal side?
8. What is the prescribed dose to the planned target volume?
9. What is your treatment protocol? Number of insertions? Number of fractions? Dose per fraction? Can we vary those for convenience?
10. What kind of imaging do you use for planning? MRI? CT? US?
11. Do you increase dwell times in areas of known cancer?
12. Do you use fiducials or Calypso transponders?
13. In my treatment plan, what do you identify as “organs at risk” and what dose constraints do you put on them?
o What dose will my penile bulb receive?
o How do you limit urethral dose? (e.g., catheter)
14. How long does each treatment take?
15. How will I be immobilized/anesthetized during each treatment? What kind of analgesia is used?
16. Are there any bowel prep or dietary requirements?
17. Should I avoid taking antioxidant supplements?
18. In your practice, among men who were fully potent, what percent remained fully potent 3-5 years later?
o Have any men retained some ability to produce semen?
o What is your opinion of taking Viagra preventatively?
19. Do you monitor side effects with the EPIC questionnaire?
o In your practice, what percent of men experience acute urinary side effects?
o In your practice, what percent of men experience acute rectal side effects?
o In your practice, what percent of men experience late term urinary side effects?
o In your practice, what percent of men experience late term rectal side effects?
20. What kind of PSA pattern should I expect following treatment?
21. What is the median PSA nadir you are seeing in your practice, and how long does it take to reach that, on the average?
22. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local HDR brachy failure, and was that focal or whole gland?
23. Are you open to email communications between us?


Questions for LDR brachytherapists

1. How many have you performed?
2. How has your practice of brachytherapy changed over the years?
3. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local?
4. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
5. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
6. For how long should I refrain from sex with a partner?
7. For how long should I refrain from close contact with people and pets?
8. Among men who are previously potent, what percent of your patients return to baseline?
9. Do you recommend ED meds as protective?
10. What kind of dose with which isotope do you use? Would adjuvant IMRT be given with that? Would hormone therapy be given with that?
11. How do you prevent seed migration?
12. Do you use “intra-operative planning” or some other technique to guide placement and assure adequate seed distribution? Do you use a template with ultrasound guidance, cone-beam CT or some other method?
13. What do you set as dose limits for organs at risk? How do you assure that urinary sphincters, the urethra, and the rectum are spared?
14. Do you do a follow-up CT or MRI after a month? How often do you find you have to go in again to treat cold spots?
15. How will we monitor PSA? What kind of PSA pattern can I expect?
16. What kind of aftercare (including sexual rehab) will you provide, and how will we monitor side effects, and for how long? Will you regularly monitor my urinary and erectile recovery progress with validated questionnaires like EPIC and IPSS?
17. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local LDR brachy failure, and was that focal or whole gland?
18. Are you open to email communications between us?

Questions for surgeons

1. How many of that technique (whether robotic, laparoscopic or open) have you performed? (1000+ would be a good answer)
2. In the last year, what was your positive surgical margin rate? (Should be close to 10% in total, less among men with stage pT2)
3. What is your "trifecta" rate? (tricky because you don't want cherry-picked patients)
4. What is your estimate of my risk for lasting incontinence; i.e., a pad or more after a year?
5. What about lasting stress incontinence? climacturia? penile shrinkage? inguinal hernia?
6. What kind of anastomosis technique do you use? (total - not just anterior)
7. Will the bladder neck be spared? How will you maximize the urethral sparing?
8. Will you take frozen sections and have a pathologist standing by to determine margins and how much of neurovascular bundles can be spared?
9. What measures will you take to assure the integrity of the neurovascular bundles?
10. What kind of penile rehab do you suggest?
11. Will you sample lymph nodes (PLND) or take extended lymph nodes (ePLND), or does it seem unnecessary for my risk level? If so, how will you find them (fluorescent dye)? How will you minimize risk of lymphocele and lymphedema?
12. What kind of aftercare (including sexual rehab) will you provide, and how will we monitor side effects, and for how long? Will you regularly monitor my urinary and erectile recovery progress with validated questionnaires like EPIC and IPSS.


Questions for a Salvage Radiation Interview.

1. What is the probability that I need salvage treatment? Do you calculate that from a nomogram?
2. Do you think I should get a Decipher test to find my probability of metastasis in the next 5 years? Do you know if my insurance covers it?
3. How large a dose do you propose for the prostate bed? (should be near 70 Gy)
4. Do I need concurrent or adjuvant ADT?
a. Why?
b. What's the evidence that it's useful?
5. How do you decide whether to treat the pelvic lymph nodes?
a. If so, at what dose? (50 Gy)
b. How do you plan to prevent bowel toxicity?
c. How will you account for the separate movement of that area and the prostate bed?
6. What do you think of doing this in fewer treatments (hypofractionation)?
7. What kind of machine do you use? (e.g., RapidArc, Tomotherapy, Vero, etc.) Why do you prefer that one?
8. What is the actual treatment time for each treatment? (faster is better)
9. What kind of image guidance do you propose? fiducials in the prostate bed? Using the fixed bones only?
10. How will inter- and intra-fractional motion be compensated for?
11. What measures do you propose to spare the bladder and rectum?
12. What side effects can I reasonably expect?
13. What probability of a cure can I reasonably expect, given my stats? Is there a nomogram you use to come up with that?
14. How will we monitor my progress afterwards, both oncological and quality of life?
15. What's the best way for us to communicate if I have a question or issue?


Questions for yourself

• Do I need to see a pathology report to tell me how contained it was?
• If I choose radiation, can I live with the fact that PSA goes down over a number of years, with bounces along the way, and never becomes undetectable?
• If the pathology is adverse and PSA does not become undetectable, am I prepared to undergo adjuvant radiation with all the potential side effects that entails? (Your doctor has hopefully run a nomogram showing the probability of this happening)
• If the radiation doesn't work, am I prepared to have a biopsy and possible focal brachy re-treatment?
• Which bothers me more - the potential for incontinence and ED after surgery or the potential for retention and irritative effects after radiation? (given the probabilities of those side effects)
• Do I understand the other possible side effects of surgery? (e.g., infection, hernia, climacturia, penile shrinkage, stress incontinence, etc.) Am I prepared to take on penile rehab?
• Do I understand the other possible side effects of radiation? (e.g., fatigue, proctitis, hemorrhoids, frequency, urgency, burning while peeing, ED).
• Am I prepared to undergo 8 weeks of radiation (5 weeks with combo therapy)?
• Am I prepared to undergo surgery and its recovery?

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Forum Moderator-Prostate Cancer. Age 62 (69 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6 yr: .1, 7 yr: .1. My docs are "delighted"! My journey:
https://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1

Post Edited (Tudpock18) : 1/6/2016 12:42:29 PM (GMT-7)