Newly diagnosed, should I be seeking anything else at this time?

Maybe a second opinion on the biopsy.

Jon Epstein at john Hopkins would be a great choice

Mel

You can not depend 100% that your cancer is limited to a harmless, slow-growing G-6..Yes, that's all the biopsy found, but biopsies frequently miss other, higher grade tumors..So you watch your PSA carefully and submit to a biopsy every year or so to make sure your condition is stable and under control...

If you are being treated by a Urologist now, I would consult with a Surgeon, a Medical Oncologist and a Radiation Oncologist just to hear what they have to say..Your primary care doctor can set up the referrals..

Hello RobertT and welcome to HW. As Mel said, a second opinion on your biopsy is definitely in order. You might also want to read the sticky thread at the top of our forum that is designed for newly diagnosed patients: www.healingwell.com/community/default.aspx?f=35&m=2652250

If I understand your position correctly, you are committing to Active Surveillance. That sounds reasonable to me given your stats but I would recommend much more than just getting another PSA test in six months. If AS is your choice, you should be under the care of a physician/group with expertise in that protocol. That doc would undoubtedly have you undergoing a multi-parametric-MRI or a confirming multi-core biopsy as well as laying out a plan for ongoing testing. AS is far more than our father's watchful waiting...you need to be as pro-active when following this treatment path as you would be if you chose a more aggressive treatment.

Good luck.

Jim

You may want to pick up a copy of "Invasion of the Prostate Snatchers" by Dr Mark Scholz. It's the best reference book on low risk cancer. As Peter and others have said good imaging is critical to a good AS program and a multi parametric MRI is the best currently available.

Robert,
The MP-MRI is not your father's MRI. It would be highly recommended for anyone considering AS.

You've got a very small amount of PC which is very natural with aging.  The majority of men your age are walking around with a small amount of PC and don't know it, and most will never know it and it won't bother them.  Keep that in mind.  What sets you and them apart is the very thin line that they, unlike you, did not go through the set of circumstances which led to a biopsy...that's about all.

So your decision to not rush into a potentially unnecessary and aggressive treatment appears smart.  Sure, you could treat it now...but why put yourself through that if it's not needed?  The scope of PC overtreatment right now is overwhelming...men with low-risk PC thinking fast, aggressive treatments "saved their lives" is widely recognized in the medical profession as a fallacy.   And believe me, the forever side effects are significant for a significant number of people; these pages are full of stories of men with ongoing issues.  Definitely you will find some men who were diagnosed with low-risk disease (like you) come here to express treatment regret with the hopes that others do not follow in their footsteps.

So what is life on active surveillance like?  As you noted, it will include periodic (perhaps twice a year, at first) PSA tests to monitor things.  There will also likely be a follow-up, confirmatory biopsy around 12-18 months from your first diagnosis, and then probably again in a couple years.  Looking forward from that, probably other imaging technology will replace the trans-rectal ultrasound (TRUS) biopsy, or you may continue to have it "the old fashioned way" every couple years going forward.  I agree with John T that MRIs today are alot different than in the (recent) past.  about a third of men eventually find that their follow-up biopsy results have tipped the scales to the point that they move on to treatment, while the others can continue monitoring over the long haul.  The philosophical question is: "for which low-risk patient is AS the TRUE success?  The patient who moved on to successful treatment?  Or the patient who completely avoided treatment?"

 

Some men are initially uncomfortable with the idea that they have a small, indolent tumor in their prostate, but patient education over time helps them to understand that this is normal aging and that their risk is low.  Initial fears are often overcome when they also see what their friends & colleagues suffer through as a result of the serious side effects of (over)treatment of PC. 

Lifestyle choices (diet & exercise) and stress reduction as a means to stop "feeding the cancer" are a part of all the best AS programs.  If you want to take it seriously, you will adopt these, too, and make sure your monitoring urologist is well-versed with the latest info on AS (or else find one who is!!).

My recommendation is to spend time learning more about AS.  For starters, Google the work of "Dr Laurence Klotz."  Spend some time learning...there appears to be no need to rush...consider yourself lucky to be one of the ones who learned more about the natural biology of prostate cancer before rushing into treatment.<!-- Edit -->

Hrpu, check the sticky thread for new patients at the top of our forum....I recall that JohnT addressed this in one of the posts on that thread.

Jim

JackH put it well in perspective, thank you.

Now that the dust has settled some, my path will be one of watchful waiting with 6 month PSA, % Free, and PSA Free testing. I'm told another biopsy might be a year or two down the road, time will tell. It was left up to me to see an oncologist or not, I see no reason to now and hope that's the right choice. An MRI was not deemed necessary necessary, and I don't know if I should pursue it or not. With that in mind, I'm moving forward on a path which I'm not 100% confident is ideal.

Was astonished that when I asked my PCP about the specific meaning and relationship of the two numbers that equal the Gleason Score he had to look it up! I have lost confidence in my PCP's expertise and feel pipelined but reasonably well cared for at the urologists. I guess that's typical.

Even though I haven't been activly posting, I have been following this and other threads and thank all for what's actually become a very good source of information.

Appreciate pointing out the difference between AS and WW, and your thoughts and comments.

I have some questions… leaving them open ended as information in my mind about some may not be factually correct:

1) How is it determined which stage cancer someone’s at (T1 etc)?

2) Are “slides” sent for a second opinion glass or digital, or something else?

3) What is involved in the procedure of an MP-MRI? A link describing procedure would be appreciated, I haven't come across one. And why would a MD simply not recommend having one?

4) How can on know if cancer is present or has spread to other areas? And along the same lines, is there any merit to the online comments blood released during a prostate biopsy can carry formative cancer cells elsewhere in the body?

As a sidenote, have made a good connection with a local support group. Interestingly, I spoke with the coordinator at length and found that more beneficial than speaking with my PCP, and a lot less rushed than speaking with the surgeon who did the biopsy. Looking forward to an upcoming meeting.

Hugging the kids has never felt so important.

Hi RobertT, Hugging the kids IS important, and you've had a wake-up call (we all have) which makes that importance more clear than ever.  The "big-'C'" can be a huge wake-up call, but thankfully, prostate cancer is really a spectrum of diseases and you are way on one end of the spectrum.  There's been a lot of discussion in the medical societies about not even calling low-risk PC by the name "cancer" because it generates a disproportionate response (over-reaction) on the part of many (not all) newly diagnosed men, leading to over-treatment.  But that, my friend, is a topic for discussion on another day...   Today, you asked a few questions: Q1) How is it determined which stage cancer someone’s at (T1 etc)? A)  You can find this online lots of different places, but what you need to know is that "T1c" means that tumor was found based on a needle biopsy done because of a suspiciously high PSA level...I believe this is what applies to you.   Q2) Are “slides” sent for a second opinion glass or digital, or something else? A)  The prostate samples taken during your biopsy procedure were mounted by the pathologist onto microscope slides for viewing (low-power, btw).  The uniquely identified and permanently mounted slides are esentially the "property" of the original pathologist, but they may be sent around for second opinions, with the agreement that they are returned to the original "owner."  They do second opinions all the time.     Q3) What is involved in the procedure of an MP-MRI? A link describing procedure would be appreciated, I haven't come across one. And why would a MD simply not recommend having one? A)  Historically, prostate imaging with CT, ultrasound or MRI has been too inaccurate for diagnosing PC.  Random needle biopsy (or ultrasonically guided biopsy) has been the mainstay of accurate diagnosis.  However, after a number of false starts, advanced have recently brought multiparametric MRI (MP-MRI) into wider acceptance, even surpassing the accuracy of random biopsy.  You might think that new technological advances would immediately revolutionize prostate cancer management. Not necessarily. Many doctors simply don’t know what’s now available. Those that are aware are often unacquainted with the full extent of its capabilities. And finally, even the fully informed doctors may be reluctant to venture outside their comfort zone and embrace MP-MRI as a substitute for doing a random biopsy.   I don’t intend to “bash” the doctors, but biopsy has frankly become a very big business, performed in urologist’s offices to more than a million men annually.   It is financially lucrative, paying thousands of dollars to providers for each procedure. MP-MRI detects high-grade disease accurately and, thankfully, overlooks low grade disease.   With the near-ubiquity of prostate cancer among men as they age, this fully supports the notion that today’s biopsies are NOT to look for the presence of PC (because it will likely be there), but rather it is intended to look for high-grade disease which requires treatment.   Any suspicious lessions that are detected by MP-MRI can be further investigated with a targeted biopsy. Very few imaging centers can do prostate imaging at a high level of quality. There are essentially three components required to achieve reliable results:   State-of-the-art, three-Tesla hardware; technicians who are precisely trained in how to perform prostate imaging; and physicians carefully trained specifically in the interpretation of prostate imaging. Imaging technology is developing so rapidly that even some board-certified radiologists remain unaware of what the latest technology can achieve.    If you are interested, I would recommend contacting the PCRI helpline for more information on where MP-MRIs are available.   http://prostate-cancer.org/helpline/    Sorry for the long-winded answer, but I thought this would be informative.   Q4) How can one know if cancer is present or has spread to other areas? And along the same lines, is there any merit to the online comments blood released during a prostate biopsy can carry formative cancer cells elsewhere in the body? A)          In advanced PC cases, spread (or metastisis) starts showing up on images, and that's when they know with high certainty.  Before that point, and for what appears to be low-grade cancer, you frankly don’t know with 100.0% certainty.   There is a very infrequently occurring strain of prostate cancer which gives off indications that it is low-grade but is really a high-grade variant in disguise.   The problem for those very few men who have it is that it has already spread.   This is why there is a small percentage of men initially diagnosed with low-grade disease who DO eventually die from PC once it progresses.   But here’s the really important fact for men who are considering AS to keep in mind…that very small rate is the same for those low-risk men who sought immediate treatment as it is for those who initially went into an AS program.   It does not matter for those men… Regarding your question on cancer spread from biopsy needles, that is considered an “old wife’s tale” and there is no scientific merit to that notion.     Also, I'm not surprised to hear you about your feelings of "support" when talking with other men with PC compared to your PCP discussions.  Please do keep in mind that I'm not a doctor, nor are others here or in your support group meeting, and all of us laypersons have varying degrees of knowledge, but it is not uncommon to hear PCPs or urologists to be amazed at the knowledge of some of their patients.  Take all inputs, but then consider the source.  At the same time, remember doctors are business-people, too. Post Edited (JackH) : 7/7/2014 12:50:01 PM (GMT-6)

RobertT, I know what you're going through. I'm wrestling with the same dilemma. I was scheduled to begin proton therapy at UFPTI beginning July 21. My 2nd opinion arrived from JH yesterday and my Gleason was downgraded from 3+4 to 3+3. This gives me confidence to delay treatment for at least a few months while I do more research and maybe have a mpMRI. I came across this paper on Gleason 6 which may be of interest to you. I don't know how to provide the link, so Google search this:

Gleason Score 6 Adenocarcinoma: Should It Be Labeled As Cancer? It should take you to a paper by these esteemed doctors:

H. Ballentine Carter⇓,
Alan W. Partin,
Patrick C. Walsh,
Bruce J. Trock,
Robert W. Veltri,
William G. Nelson,
Donald S. Coffey,
Eric A. Singer and
Jonathan I. Epstein

I edited the post to include a link to this paper: jco.ascopubs.org/content/early/2012/10/01/JCO.2012.44.0586.full.pdf
FYI, this topic has been discussed a number of times on HW with predictable passion.
Jim

Post Edited By Moderator (Tudpock18) : 7/11/2014 10:48:13 AM (GMT-6)