Diagnosed last July. Newbie to forum.

I will try to get this right and be as clear and succinct as possible.

58 years old and otherwise healthy.

Regular physical felt nodule. Confirmed by urologist. Ordered a biopsy.

Went from 1.7 PSA to 5 in two year BUT both missed a year in the middle AND had my blood taken the day after my regular doc examined my prostate. Could have spiked it.

12 samples taken at biopsy and two positive.

 Both were Gleason 3-4.

Sent blocks and slides for second reading to Johns Hopkins, Dr. Epstein.

One was Gleason 3-3 and other 3-4

Went from Sacramento urologist Dr. Louis Giorgi to Dr. Peter Carroll at UCSF. He ordered the following.

1. New PSA

2. MRI using endo-rectal coil

3. Genomic Health's Oncotype DX study

4. Another Ultrasound.

I think Dr. Carroll is very good and has a great CV http://urology.ucsf.edu/people/peter-r-carroll

The results were as follows:

The PSA went back down to 2.6.

The MRI was inconclusive because I have a metal hip that blocked a good view.

The Ultrasound was "good" in the sense that I don't have an enlarged prostate and the nodule had not changed from the time it was done before my first Sacramento biopsy.

The Oncotype DX study was not what Dr. Carroll had hoped. on a scale they use called the Genomic Prostate Score (GPS) I came in at 29. If you plot this on their "very low, low and intermediate "Likelihood of Favorable Pathology, I am at 57% Likelihood of Favorable Pathology. I am on the lower end of intermediate and where Dr. Carroll wanted to see me was on the line between low and intermediate.  He thus concluded that I am not an "ideal candidate" for active surveillance. This was all around September.

He then said I could get another biopsy in a few months or have robotic surgery. He's one of the best at "active surveillance" and the best at robotic surgery I have heard. I got yet another opinion from Dr. Anthony D'Amico at Dana-Farber (Harvard) who sometimes takes a different view and has written extensively on PSA's their determining whether cancer is present or not. His counsel was that Dr. Carroll was right BUT he didn't think another biopsy would tell us anything.

I circled back that information to Dr. Carroll, asking why he wanted another biopsy. He said he just wanted to confirm that the cancer had not advanced again trying to get closer to the question of "when." He suggested instead that we do another Ultrasound and a PSA. The Ultrasound a week ago was the same as in September of last year so good.

I have also consulted with various friends and sources in the business, including Leslie Michaelson who ran the Milken Institute for Prostate Cancer for five years (confirmed my path), Dr. Robert Kessler, an uncle of a friend at Stanford's Department of Urology and a close friend David Yee that does the robotic surgery here in Sacramento.

The most recent interaction with Dr. Carroll was him suggesting another biopsy (again!), PSA and ultrasound in August. Since I am not perceived as a great candidate for active surveillance I wonder why. I completely trust everyone I am talking to say that it's time but am confused. My wife said I should ask the following three questions:

1.  Does the recommendation for another ultrasound in 6 months, instead of 3, signal a possible modest reevaluation of how much cancer he has, or how fast it might be growing?
2.  Does the risk of side effects from surgery increase as time goes on, given the potential for some growth?
3.  Are there any new treatment modalities in the pipeline such that he could benefit from them before he reaches a "drop dead" date for deciding on surgery?

That's a lot to write so I apologize. I am just trying to decide WHEN is the right time and to what extent you can carefully "play chicken" with prostate cancer, something I really don't want to do but also don't want to have surgery until I need it and it's still at the point where we can do it to save nerve bundles and maximize functionality afterwards.

Finally, NOBODY has suggested any kind of radiation treatment. Age, health and other factors must come into that but not a single person I have talked to has an axe to grind one way or the other.

 

Hi,

Generally they recommend surgery if the patient is younger (you are) and if a cure seems highly possible.

You've already been diagnosed with having Gleason grade 4 (the 3+4=7). So I do not see (through my NON-medical eyes) any reason to do another biopsy when PC has already been confirmed. Treatment should be the next step.

One of the general rules of thumb for AS is that the PC not be any higher than Gleason 6 -- which would rule you out for AS. Also, remember that a standard biopsy samples only about 1/1000 of the entire prostate. Around 25-28% of the time, a biopsy MISSES a higher grade tumor within the prostate.

There are plenty of guys who have posted that their biopsy clinical report estimated their PC to be Gleason 6 or 7 -- only to further report that the post-op pathology report upgraded them to a Gleason 7, 8 or 9. This does not mean that the original tumor tissue was misread -- it usually means that the biopsy missed other tumors within the prostate and gave a false impression of a less agressive Gleason 6 or 7.

I would recommend that you schedule consults with a HIGHLY experienced radiation oncologist AND a HIGHLY experienced urologist/surgeon. You can then learn the pros & cons of both types of treatment. While I would not panic over this, I would not waste a lot of time either.

You might also purchase a copy of one of the gold standard books on PC -- Dr Pat Walsh's "The Guide to Surviving Prostate Cancer." Tons of info in there.

They say that younger patients do much better with surgical outcomes in terms of recovery. That is one reason they often look at surgery in a curable case. Another reason is that a younger patient has a longer lifespan ahead of them than older ones -- which means that you could potentially live long enough to experience a different type of cancer, caused by the radiation, 15-20 years down the road.

It is also important to note that the latter reason is based on the assumption that radiation treatments can trigger new cases of cancer -- but this may be a remnant from a more distant time when radiation equipment was not as fine tuned & sophisticated as it is now. They say that it is rare for modern radiation treatments (using newer equipment) to trigger fresh cases of cancer down the road.

I don't know if this is true or not, but it's worth mentioning here.

In any case, anything biopsied as a Gleason 7 or higher needs some type of treatment because it can be more aggressive than Gleason 6 (lower risk disease) and, with the potential inaccuracy of the biopsy, there "could" be more aggressive tumors in there that were missed by the biopsy needle.

In Dr Walsh's book, he refers to PC as being "multifocal." This means that there usually is more than one tumor within a cancerous prostate. He says the average is about three tumors and as many as 6 or 7. These tumors are all separate from each other & usually tend to all spring up about the same time.

So, whatever choice you make for treatment (if you choose treatment) should be done in the near future in case there is more to it than predicted by the biopsy.

Good luck to you!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Pathology showed Gleason 3 + 3, pT2c, N0, MX, R1
adenocarcinoma of the prostate.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, 9/9/13 PSA <0.1. PSA tests now annual.
Firm erections now briefly happening in early mornings, 2 years post-op.

Post Edited (HighlanderCFH) : 1/18/2014 1:54:02 PM (GMT-7)

Rslobe,
Given your diagnosis you will be fine regardless of the treatment you choose. Like you, I was surprised that radiation was not mentioned as an option. I realize that uro's will mention the possibility of secondary cancers after radiation for younger men but the data is lacking. I looked at a report yesterday from Vancouver that showed the risk of 2nd cancers was 4.5% for radiation and 1.8% for surgery based on an older 7 year report for men from 5-7 years after a procedure; the problem is that obviously older equipment was utilized and the radiation cohort was older so more secondary cancers could be expected. I really didn't find the report meaningful so I guess you are on your own.
There are many "seed" men on this forum and it appears to be an excellent option with minimal SE's. Since you would not have surgery unless the surgeon was a recognized expert
I see no risks there either..Horns of a dilemma..Keep us informed since your treatment may benefit others. I do wish you well.
Bill

At your age and with your stats tending away from AS, I would certainly consider surgery. Get rid of it. My stats this past September were not that much different than yours. I second Tall Allen's suggestion about Ash Tewari at Mt Sinai. He did my RALP with a very good outcome. As far as I could tell he had an extremely low Positive Surgical Margin rate. Whatever you decide to do, try to wrap your mind around it and make the decision your own. When you do that, you can then feel confident that you've made the right decision for YOU! Best of luck which ever way you go!

As a seed man myself, I would certainly hope that before you follow any advice to 'get rid of it', you talk to a top rate oncologist. The 'get rid of it' mentality has left far too many with permanent SE's that they need not have endured.

robertC said...
You are a candidate for radiation IMO .
If you wanted to be different how about Targeted Focal Therapy?
Am thinking those options would be between AS and surgery.
The pipeline is mostly unproven stuff, none reputed to be curative.
Good luck on your decision and health.

http://www.precisionprostatecare.com/

If you qualify for TFT I urge you to consider it. It's been near 6 years now and I remain the most successfully treated individual here. My only side effect is about a 60% loss of ejaculant, never any incontinence for I still have a functioning prostate and all my valves. A true 21st century treatment.

The only problem it's only available in the land of the Denver Broncos!!

WOW. I'm impressed with all the research being discussed here!
I'm 68. Dx withs pca 11/13. Clinical gl 3+3. 3 of 10 samples positive. DRE revealed a lump. I just wanted it out! Did I do enough research? Surgery 13 days ago. Post op pathology, gl 3+2. Part of prostate that had the lump revealed MUCH MORE CANCER THAN WAS THOUGHT. Don't know if I needed to spend more time thinking and looking for opinions. Would I have missed my "window of oppurtunity"? Feeling GREAT about my decision. I wonder what would have happened had I not decided on immediate surgery as
this never would have been known. When is too much research too much! Does too much info. confuse or bog down the the decision making process? In the end, everyone has to decide what works best for them. Good luck to all that are still deciding. It must be nerve wracking.

Well...it MAY be somewhat of a "crapshoot" but there are MANY, MANY things a patient can do to improve his odds. You can start by not being rushed into treatment and taking a reasonable amount of time to consider what may well be a life-altering decision. You can get educated about our disease by reading the excellent books by Drs. Walsh and Scholz as well as the references on the sticky thread at the top of our forum. You can get your biopsy slides read by an expert pathologist like Dr. Epstein or Dr. Bostwick. You can avail yourself of the latest technology such as biomarkers, CDU and 3T MRI Guided biopsy. You can seek out multiple opinions of doctors in different disciplines...surgeons, RO's, Brachy specialists, Prostate Oncologists, etc. You can ultimately pick an experienced physician who has many hundreds of the chosen operation under his/her belt. Etc, Etc, Etc.

Of course there is such a thing as "paralysis by analysis". But...far more often on the 5+ years I have been on this forum I have seen rushed decisions and rarely has the alleged paralysis really occurred.

I think the OP appears to be off to a good start in terms of approaching this thing in a studied and thorough manner. The potential outcomes are far too ugly to do otherwise, IMHO.

Jim

P. S. to Andrew. You know I love you but there is significant difference of opinion about this "gold standard" description of surgery. Walsh thinks it is but to quote Dr. Scholz, "There was a time, now past, when surgery was considered an appropriate remedy. In fact, surgery was termed the "gold standard" of treatments. Thank God, we are off that gold standard. The tragedy is that most men don't know this."

P.S.S. to Ziggy. Great to hear from you again and of course TFT should be one of the treatments considered!

Still a newbie here but is Pat Walsh now considered a dinosaur? Surgery is no longer the gold standard? Questions I think I would ask myself, What is gained by waiting? Was I facing the possibility of missing that "drop dead date" you mentioned. How many other "experts" are needed? Am I waiting for someone to tell me somrthing I'd rather hear? Do I need to be told more than twice that I'm not a candidate for as?
My slides were read by Johns Hopkins trained po's. My surgeon teaches others (proctors) on divinci and has been doing this
procedure for yrs. (1500+). Am I better off having made the decision for surgery? I don't know. I'm happy with my decision. That is all that counts. Best of luck to everyone struggling to make the decision.

In fact, surgery was termed the "gold standard" of treatments. Thank God, we are off that gold standard. The tragedy is that most men don't know this."

This quote really hits home with me. I have believed this for a very long time, but in my five years on this forum, I have seen the same scenario play out time and time again. Regardless of the latest studies/statistics, more often than not, the surgeons are able to scare patients into surgery. Sometimes they are satisfied with their decision, but many times they are not. It truly makes me sad to read the accounts of guys who are suffering from SE's that they may not have had to endure.
I've been beaten up for my opinion in the past, so I won't be surprised when it happens this time. I am just very disappointed that with all the options now available, the alleged 'gold standard' is still the path most often chosen.

Nobody scared me into choosing surgery. I received input from many sources including some very astute members of the HW Prostate community. AS was suggested by a number of people based on my "metrics". In retrospect, AS would probably have been a bad choice. Yes, I know that I probably would not have died of Pca if I had waited, but I suspect my life would have been a bit less comfortable in the years ahead. Since you only need 51% of the participants in a study to claim a "majority", what about the other 49%. Same thing goes if the percentage is 80% and you wind up in the 20%.

We are all individuals and the metrics are simply a guide, not gospel. I had a number of "wildcards going into this. My natural total testosterone level is about 1250. My father died of prostate cancer. My PSA was only 1.6. and my prostate size was only 34-38. In addition, I was already having problems with BPH such as a slower stream and urgency problems which I understood might get a great deal worse after radiation of any type.

I don't buy the contention that SEs are only a problem with surgery. Radiation certainly can have its issues and complicate fture resolutions. Sure, not everyone has the result tht they hoped for with any approach but does that mean that they made the wrong decision? I don't think so. Am I only satisfied with the decision I made because it seems to have turned out so well? I hope not.

I strongly believe that when I made the choice I made, I was willing to accept the outcome: win, lose or draw. I had so wrapped my head around it that I knew that I would never second guess myself if the results did not hit the mark. I still believe that now and still see myself as a very lucky guy.

We can only control so much. I don't want anyone to make a choice and still be harboring doubts.
Whatever one chooses, I hope they can really be at peace with that choice and move forward.

Tall Allen,

I was explicitly not asking them what to do. I was asking them, given all they'd heard from me, what option they would pick and WHY. One surgeon and one RO absolutely refused to answer that question. All of them gave me lots of information. But, it's often information that's hard to distill and use. And, for the record, I run the software department of a company that does healthcare IT and I'm a mathematician/statistician who is used to reading published medical research studies. So, math is not a challenge to me. The medicine is not a risk to me. But, when it comes to the idea of doing IMRT as a first choice, and then wanting to know if salvage surgery might be an option (and how successful is it, who does it, why or why wouldn't you do it), I felt like the docs fell short.

I think your car analogy gets partway there, but ultimately falls short. But, it fails to address the true life or death or QOL issues that we are all most interested in. A red Tesla or silver Prius is likely to get me to work. One might be more fun than the other, and one might be safer than the other and one might be more economical. Those aren't the same as the decisions we are getting to make.

I understand your point and I understand why you might not want the doc to offer anything other than risks and benefits for various treatments. But for me, these guys are the experts. In the end, I want to know what they think is best, based on what I've told them about my priorities.

If I failed to do that in my day job, I'd be fired.

I agree with Tall Allen. My first urologist who did my first biopsy answered me with a straight face how much time I had if I did nothing told me I'd be dead in 7 years.. Looking at my stats below indicated that initial doctor was either an idiot or a liar. I 'll say the latter for he must've thought I'd be one of those screaming "get it out of me stat!!!" and jump on an operating table asap. I don't panic, sorry Doc. I believe the gold standard although true back around the turn of the century is well tarnished now. BTW the most often reason for those choosing surgery is because they can have radiation if surgery fails. I won't comment on the veracity of that comment but the fact is after failed surgery SRT only has a success rate of 30%. It's odd though how people here only a few months become experts after their choice is made and done. Please take into account many of these people are still trying to convince themselves they have no regrets. But most of the SE complaints here by far come from those who chose surgery. Through my last 6+ years dealing with PCa and watching guys come and go here all I can say is take your time in making a decision. For those who can do AS I would sure consider it for treatments like mine and new drugs are coming down the pike true gold standards for the 21st century. Do you want to miss them? The biggest regret to have is those who choose out of panic or a doctors scaring them. Remember I personally when through that nonsense. Thus I tell all take your time educating yourself. I swear many guys take more time deciding what car to buy rather than studying a treatment that may have major lower quality of life side effects. Be patient, thoghtful reflect and then decide.