Prostate Cancer Research Institute on risk level and treatment

The PCRI is publishing an initiative "What is Your Type" to determine risk levels and recommended treatments.

Hi John,
I generally agree with PCRI but this is too vague. I believe that age and family history should also be factored in. For example, I guy at age 40 Dx with G6, PSA 3.5, and 1 core positive at 20% might still be better off with treatment if he's got a brother affected and a father who died of prostate cancer. Likewise, a G7 guy who is 44 (like me) and has positive margins and SVI will most definately benefit from adjuvant therapies as opposed to monotherapy. PCRI is supposed to be changing some of these charts to reflect new findings that early treatment in younger men is more effective than it is in older men...Stay tuned on this one.

Tony

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 Age 46 (44 when Dx)

Interesting I guess this would place me in the do nothing category which was the rec of my original uro, but I have a hard time understanding at age 54 why not just get it taken care of. I really have no interest in managing cancer for several years, time consuming and expensive wait for something that will need to be done eventually. But I understand the logic, I think they need to include age as a factor. Not to be cynical but the medical profession seems to be in love with multi year maintenance programs, I will give you some pills and come back in 6 months.

As a quick introduction this seems very reasonable. The direct link to the table and its supporting material is:
www.prostate-cancer.org/education/whats_your_type/

engineer55 asks: "why not just get it taken care of?" Each person needs to ask themselves this question, but let me briefly summarize my take on the current medical thinking (which is based on lots of statistical analysis.)

Suppose that you are diagnosed at age 54 with a low risk prostate cancer and decide to do nothing. Eight years later you die from a heart attack. During this period you have lived without any effects from your PC.
Now in the same circumstance suppose that at 54 you have the cancer treated and you spend the next eight years incontinent and unable to perform because of ED (pretty much a worst case scenario.) Again, after that eight years you die of a heart attack (sorry, but this is just a hypothetical.)
In which of these two cases has your prostate cancer treatment given you a better quality of life?

Of course there is the third possibility. Diagnosed at 54 and doing nothing, your cancer spreads and in eight years you die, heavily medicated for pain, as a weakened invalid from prostate cancer. But given that you start with a low risk diagnosis this last scenario is not very likely.

None of this answers the question of what an individual should do, but as a majority of people on this board know, PC treatment can have an effect on quality of life. The question that is so difficult to assess is, given the high likelihood of diminished quality of life (even if temporary) what do you get for your treatment?

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Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.

Geezer,

I agree with you that it is a personal decision and given the same circumstances different individuals will make different decisions. I think a lot of doctors understate the side affects and complications of various treatments and judging from the posts on this and other sites there are some severe complications that greatly affect the quality of life of those experiencing them.
Age does matter as it gives a low risk PC more time to develop into a high risk. There are still a lot of men given all the facts that would choose to delay treatments of low grade PC and accept the small risk of it being caught too late vs living with some severe side effects. There are others that just can't stand the idea of having cancer in their body. I'm all about making an informed decision based on an individual's preferences and accepting the risks associated with that decision.
JT

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64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

As of April 10 and 7 weeks on Casodex and Proscar PSA has gone from 30 to 0.62 and protate from 60mm to 32mm. Very minor side affects. Doc says all this indicates tumor is not aggessive

Awaiting schedule for seed impants

 

I certainly wasn't trying to make a judgement for anyone else and I was given all the options including the car crash in 5 years, just sharing my thoughts. I think part of the problem is the early detection case has not been fully evaluated by the profession, and I am certain with PSA tests we will get an avalanche of new 3+3 under 10 in the next few years. I am a little worried that by waiting I might risk the chance of insurance companies closing the door on low risk case sugeries. Just at age 54 , 5 and 10 year survival rates don't mean much.

What will happen when the governnment begins making these decisions for us ? There are rumbligs that RP's wlll not be justified in a man over 65. Charts like this could be very dangerous in the hnds of beaurocrats and National Healthcare plans !

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Age 58

That is what seems to be missing in the national health plan explanation, nationalized health care nations limit surgeries based on need and age. I heard Sweden has a cut off at 80.

Engineer, & goodlife,
So very right both of you. Already there is a push by the insurance companies to have Medicare cease on Proton therapy for prostate cancer because the is an LCA (least cost alternative). In addition, data is coming in on the under 50 group that may altogether change how these charts are made. Treatment decisions will likely be different for a guy Dx be low 45 than even a 50 year old given all the same numbers, otherwise

My argument at the Prostate Cancer International meeting two weeks ago was that by eliminating any demographic (such as under 50 years of age) from studies is invalidating these studies. The recent conflicting NEJM releases both did that. And today we saw yet another new study that says guys in their 40's may get the best mortality results from early aggressive treatment. Of course there is a cost...

John, Thanks for this post.

Tony

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 Age 46 (44 when Dx)

Engineer,
You need to be careful about what you "hear"
www.sweden.se/eng/Home/Work-live/Society-welfare/Health-care/Facts/Swedish-health-care/
Bill

You can ration care by various means - regulate who gets a service or reduce the availability of services. Sweeden, it appears, went the way of Canada and chose the service rationing: "Waiting times for pre-planned care, such as cataract or a hip replacement surgery, have long been a weakness that has caused dissatisfaction. Despite a major increase in productivity – the number of operations in relation to population size is higher in Sweden than in other countries – there are still long waiting lists." How about waiting for an RP? Or salvage radiation? And this is after they pay 70% in taxes. No, thank you. I am a big fan of US healthcare system. It may be expensive, but you get it when you need it. Let's not fix something that ain't broken.

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Previous 5 biopsies over 4 years negative

Dx Nov 2007, age 46

PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke

6 rounds of chemo (Taxotere+Avastin)

1/8/2008	33.90
1/11/2008	29.50
1/31/2008	38.20
2/21/2008	32.00
3/13/2008	26.20
4/3/2008	26.60
4/24/2008	20.60

followed by surgery at Duke (Dr. Moul) on 6/15/2008

Gleason downgraded 4+3=7, T2b N0M0, one small positive margin

PSA undetectable for 8 months, then

2/6/2009	0.10
4/25/2009	0.17

O.K But lets assume you are in the US, unemployed and thus without health insurance and have exhausted all your savings. Now you find you need an RP...........???? Do you then "get it when you need it"? We know that in Sweden, irrespective of ability to pay you are going to get your operation. I think also that you'll find that that tax rate of 70% is a bit of a furphy as well.

en.wikipedia.org/wiki/File:Income_Taxes_By_Country.svg

Bill

Post Edited (BillyMac) : 5/27/2009 4:44:41 AM (GMT-6)

It is a fair point. I was there. Fortunately, I found another job and was covered before I was diagnosed.

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Previous 5 biopsies over 4 years negative

Dx Nov 2007, age 46

PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke

6 rounds of chemo (Taxotere+Avastin)

1/8/2008	33.90
1/11/2008	29.50
1/31/2008	38.20
2/21/2008	32.00
3/13/2008	26.20
4/3/2008	26.60
4/24/2008	20.60

followed by surgery at Duke (Dr. Moul) on 6/15/2008

Gleason downgraded 4+3=7, T2b N0M0, one small positive margin

PSA undetectable for 8 months, then

2/6/2009	0.10
4/25/2009	0.17

Bill,

We all know hospitals give a lot of care to anypne who walks in the door. I am not sure about RP, but you are probably correct. However, treatment is available, albeit it may be the least cost such as RT.

On the other hand, is it fair to say that everyone gets in the same line and waits for his RP, whether he's paying taxes or not, whether he's paying healthcare or not ? Probably not.

It seems like we can fix our present system without throwing iut the baby with the bathwater !

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Age 58

John T:  Thank you for posting the info and statistics from the Prostate Cancer Research Institute with respect to risk levels once there has been a finding of prostate cancer.

geezer99:  Excellent risk/reward analysis.

I live in SW Florida, which, because of its demographics, is a "hotbed" for prostate cancer.  I suspect that many men my age (65/66) would derive more benefit from this PCRI info and risk/reward analysis than they would from spending countless hours attempting to find "the best form of treatment" or "the best surgeon".  Not that these issues aren't important; it's just that you don't have to reach them if you determine that you are a good candidate for "active survillance" (or "watchful waiting", if you prefer).

In hindsight, I would have benefited greatly had I seen and analyzed the PCRI info and statistical evidence prior to settling upon da Vinci surgery.  And I thought that I had done a lot of research   -  my fault.  Now, at 24 months post-op, with total incontinence and complete ED, I spend more time and effort (and with considerably much less joy) trying to correct the incontinence and ED than I would be spending on "active surveillance".

RHC Jr.

Dear RHC:

You make an excellent point and, hopefully, more men will take the time to do what you suggest.  We see some men who visit this site supposedly asking for advice but with their mind pretty much made up that they must "get it out".  Your 24 month post-op story should give pause to anyone who doesn't consider quality of life issues along with treatment options. 

By the way, I spend winters in Naples and am well aware of Dr. Figlesthaler.  He is highly thought of and I believe he is one of the best and most experienced robotic guys around.  However, my limited experience with his practice would indicate that they push the patients hard to have robotic surgery.  I visited one of the other docs there just so I could have a urologist in SW Florida in case something went wrong after my brachytherapy (which I had done in VA).  The doc didn't even mention other treatment options when he found out I had PCa...rather, he just tried to sign me up for a robotic surgery ASAP.  I don't know if this is because he was so devoted to this treatment or he wanted to amortize the expensive equipment.  I suspected it was a little of both.  Anyway, I mention this only because I hope you don't beat yourself up too much for your choice.  A hard charging and aggressive doctor can have a great influence on a patient's choices...

Re your continuing problems - there are tons of guys on this forum who have continence and/or ED issues and, hopefully, some of their advice will be helpful to you in the future.

Good luck and continue to enjoy beautiful SW Florida,

Tudpock

 

My surgeon said if it was him with a gleason 9, he would have it removed. My radiation oncologist said if it were him, he would have it radiated. What else did I expect them to say ?

In the end, it was my decision as informed or uninformed as it was. Life is full of second guesses. If we wait long enough, there will probably be a better option. It's the waiting that is the catch. I wasn't waiting for mine to start moving out of the prostate.

Wearing pads is no picnic. ED is certainly a nasty side effect. ( gotta love those pumps, and blue pills.)

But in the end, life is better now than being wracked with pain, wishing I would die because I didn't take action. Bone cancer is no picnic either. I am choosing to live life, be it 10 years or 15. I am going to deal with problems as they come, and play with my grandkids now.

We must look forward, not backwards.

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Age 58

RHC,
Knowing what I know now I would gladly accept a 5% chance of the cancer spreading with watchful waiting than undergo a major surgery with almost certain lifechanging side affects and still no guarantee of a cure.
I was originally DXed with a Gleason 6 and was scheduling surgery until I got a 2nd opinion. The oncologist's 2nd opinion said he would never treat the small amount of PC that showed up on my original path report.
Again it's all about individual risk/reward.
JT

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64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DX BPH and continue to get biopsies yearly. Positive Biopsy in 10-08, 2 cores of 25, G6 less than 5%. Scheduled Surgery as recommended.

2nd Opinion from Dr Sholtz, an Oncologist said DX wrong, path shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G 4+3 approx 2.5cm diameter.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and burining urination. Daily activities resumed day after implants.

Scheduled for 5 weeks IMRT in July

JohnT

From what I know, goodlife,
The chance of pT3a G9 prostate cancer spreading is near 100% if not treated correctly... You made the right call with surgery according to all the newest reports. You might also want to ask an oncologist if adding adjuvant therapies of RT and a stint on HT is wise. It was for me according to the AUA, RTOG, and the Stanford/Harvard University studies. Kicking the disease while it is down is better that treating it with salvage therapies.

Tony

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 Age 46 (44 when Dx)

I think Geezer got it right, but my two cents are along these lines. This is really an easy question (not that the answer is easy, mind you!). The question is:

What's the lead wolf?

Suppose three guys, Shadrak, Meshak, and Abednego, walk out of their doctors' offices on the same day with identical PCa diagnoses and stats (age, Gleason, doubling time, whatever you like).

Ten years later, if untreated, Shadrak would be asymptomatic and die of a heart attack, Meshak would die of his PCa, and Abednego--he would have another 20 asymptomatic years ahead of him.

So whom do we treat?--all of them!, of course, because we can't tell which is which (same stats, remember?).

Each of us has a pack of wolves chasing us, back there in the mist: heart disease, cancer (maybe more than one), etc. The first one to catch us will kill us. It doesn't make any sense to go firing away at the wolves that are in the back of the pack: it wastes money and can have nasty side effects to no point. But today, because we can't tell which is the lead wolf, we shoot at whichever ones we can see.

This is not just a PCa question. Even if we could say with confidence that Meshak's cancer would kill him in 10 years, we don't know whether PCa is the lead wolf unless we also know the state of his arteries, etc., etc.

Since medical science can't tell us which wolf is the lead wolf, we pop away at any wolf we see, with the attendant wasted money and quality-of-life issues. I think this is the origin of the "over treated" line in the press. I'm reading that the same "over treated" argument could apply to breast cancer.

This is all separate from the problem of having an effective treatment for each of the different flavors of our disease.

So this is only accidentally a question of money or politics or rationing. The point (I think) of the original article, back when, was that we need better tests, so we know whom to treat for what. Since our tests aren't able to tell us what we need, we wind up in the mess we're in.

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Larry Shick
Personal homepage incl. PCa story: www.sv-moira.com.
01/09: Diagnosed (age 60) biopsy PSA 4.4, free PSA 9%, T2c stage, Gleason 7 (3+4), 7 of 14 cores; 6'2", 200 lbs.
03/09: Robotic surgery (Dr. Kawachi, City of Hope) 47 gms, 10% involved, staging/Gleason unchanged (pT2cNXMX), margins clear, no ECE/sem ves involvement, fully continent from day 1, some success w/Viagra 50mg/day.
Followup: 05/09 0.006

Larry,
We do have good tests for determining which PC is agressive and which is not. Most doctors are uninformed about using them.
For example, a G6, low % cores: if PAP is normal, PCA3 is low, psa doubling time is greater than three years and color doppler and MRIS show no or very little tumor volume then your chances of dying from PC are practically zero without any treatment.
It is estimated that 50% of all men over 50 have these indolant, clinically insignificant cancer cells in their prostate and if biopsied enough you will find them. Most doctors recommend treatment, except if you are 75 or older.
Also bone and CT scans are routinely ordered for most PC patients, even though we know that unless your psa is over 20 or have a high Gleason these tests will always be negative.
I think this is the value of going to a good prostate oncologist as he has the skill to accurately stage your PC and determine it's agressiveness and appropriate treatment. Most urologists and surgeons will say, it's PC we have to cut it out. My 1st three urologists didn't know anything about these tests. When I asked my surgeon about them, he stammered then said they were inaccurrate and unnecessary (and a major surgery was, without having any information about the volume, location and agressiveness of the tumor??) The light went on as I realized that the only thing these guys knew about was cutting, and their knowledge of dianostics and staging was woefully inadequate.
Even their knowledge on biopsies is limited. After 12 biopsies I went to Dr Bahn, who is a radiologist that has done over 14,000 biopsies. He explained
why many biopsies are inaccurrate, I clearly saw the needle tracks of my last 25 core biopsy not even close to the tumor. He hit it 3 out of 3 times.
There are a few doctors that really understand PC and are worth searching out. Many more are clueless and recommend treatments using very little information to back up their recommendations. Being an excellent surgeon doesn't automaticaly make one a good dianostician. These are two separate skill sets and both are needed in order to achieve the most favorable outcome.
JohnT

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64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DX BPH and continue to get biopsies yearly. Positive Biopsy in 10-08, 2 cores of 25, G6 less than 5%. Scheduled Surgery as recommended.

2nd Opinion from Dr Sholtz, an Oncologist said DX wrong, path shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G 4+3 approx 2.5cm diameter.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and burining urination. Daily activities resumed day after implants.

Scheduled for 5 weeks IMRT in July

JohnT

JohnT:

Your last post, IMHO, is one of the best and most helpful I have seen on this forum.  This is a critical post for all new patients to see...especially early stage folks.

Thanks!

Tudpock

Tony and goodlife,