Dr. Bert Vorstman skeptical of any Pc treatment. What do you think?

Dr. Bert Vorstman‘s advice is based on somebody having a Low Gleason score and no metastasis outside the prostate. For somebody with metastasis outside the prostate and a high Gleason score doing nothing would be suicidal.

This comment of his is absolute nonsense
“the claims about the benefits of prostate cancer screening and treatment are untrue”
We are seeing more and more people come in with advanced cases of prostate cancer that had not been detected because 13 years ago doctors decided not to test people’s PSA. This has been disastrous for a huge number of people. I attend nine advanced prostate cancer meetings every month and find people with new extensive prostate cancer cases coming in constantly.

That doctor’s opinions were based on people being over treated when they had a Gleason 3+3 or maybe a 3+4 with A low percentage of four. There’s a big difference between “don’t do anything” and make sure you aren’t coming down with an advanced case of this disease.

Another real questionable comment
“ there’s no scientific evidence that the Prostate Cancer Awareness and Active Surveillance programs save significant numbers of lives”
50% of the people on active surveillance end up with a active case of prostate cancer within 5 to 10 years. Some of those cases are quite aggressive and came on quickly. My brother was on AS for six years and then the biopsy found Gleason 4+3 in multiple spots. At 77 should he do nothing? My father died of prostate cancer at 88 and it was extremely painful. He was on so much morphine he couldn’t communicate for the last three weeks.. This is a man who had his teeth ground down and crowned without Novacaine because he had such a high pain tolerance. His father lived to 98 with a huge prostate. Should my brother have waited, Hard to make it to 98 If you let a medium case of prostate cancer that came on pretty quickly be left untreated. Especially when it’s been so aggressive in your brother and your father.

I should’ve commented on your particular case.

With that high A decipher score You need to be careful.

One 3+3 and one 3+4 is not a major case yet. What percentage of Tumor was found in the 3+4 and what percentage of it was a 4?

That’s pretty critical to find out whether or not you have to do something immediately. If it’s only five or 10% of four, then you might be able to do active surveillance for a little while.

I’m not sure you’ve seen these videos. They discusses who is a good case for AS.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.

@quaddick - You're right to be skeptical of health advice from random YouTube videos.

So many people have been diagnosed with de-novo advanced prostate cancer in recent years because of bad information like this, and unfortunately, not all of that is coming from YouTube quacks. 😢

Get to a reputable cancer centre and listen to their advice. If you don't feel confident, get a second (or third) opinion from other oncologists.

No one can diagnose you and design a treatment plan through a generic YouTube video or online forum, even if they have "Dr." before their name, and no credible/ethical oncologist would even try.

I'm not a medical professional nor do I claim any elevated knowledge level in prostate cancer. Prostate cancer is the 2nd leading cancer death in the usa for males. It's estimated 36,000 men will die this year in the usa. With appropriate screening and appropriately timed intervention, I believe that number could be greatly reduced. Best wishes.

Some of his comments contain some truths, but his conclusions are questionable:

(1) Of all cancers in men, prostate cancer has one of the lowest mortality rates (< 12%). (Pancreatic cancer has the highest at almost 80%.) 15-year outcomes for prostate cancer after active surveillance, surgery, or radiotherapy are nearly the same:
> https://www.nbcnews.com/news/amp/rcna74512

> https://www.nejm.org/doi/full/10.1056/NEJMoa2214122

So, the question isn’t whether active surveillance (AS) programs are saving lives. The question is just the opposite, why are so many guys getting radical treatment when it isn’t medically necessary?

(2) His comment that “countless men are injured in the process of prostate cancer testing and treatment without benefit” is without merit. Most guys don’t understand that a PSA test is not a cancer test. (In fact, prostate-specific antigen is not even prostate specific.) The PSA number is similar to a “check engine” light in a car; it indicates that something may be wrong, and further checks should be made “under the hood.” Might be as simple as a UTI; might be BPH; might be more serious, such as prostate cancer. Just need to have further checks. So, guys panic and make the wrong decision that they have to “do something” when they get an elevated PSA result when the right thing to do is to do nothing - just get further tests. That’s not the fault of the PSA test. That’s the fault of guys doing the wrong thing with the information.

(3) I’m not sure what is meant by “the prostate cancer narrative exploits false hope and false promises by recycling misinformation” or “the claims about the benefits of prostate cancer screening and treatment are untrue,” but if it’s anything like the first two, I wouldn’t put much in it.

So, screening (starting at 40y-45y) simply provides information, active surveillance should always be the goto option, and active treatment should be reserved for those who are de novo metastatic, have a major risk factor (e.g., gene mutation, or other risk characteristic), or have some other medically necessary reason.
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Going from a 3+3 to a 3+4, is probably because (1) they simply missed it before, (2) the secondary “4” cell structure was previously too small to see, or (3) they initially interpreted as a 3+3 what was actually a 3+4.

There’s nothing particularly aggressive about a 3+4 that would indicate high risk of metastasis (which is why NCCN guidelines don’t recommend ADT with a 3+4).

Yes, it’s complicated. But each step of the diagnosis and treatment requires serious thought. (Caution is preferable to rash bravery.)

I agree with Jeff and North and based on my husband's experience and taking into consideration your Decipher score so HIGH (!!!) and also knowing that biopsy takes only about 1% of the whole gland for examination - my advice would be to have "super-active" surveillance with having biopsy every year and monitoring your PSA every 3-6 mos. and MRI every year. With Decipher so high your cells already have a lot of mutations and are becoming very aggressive in nature. Keep in mind that aggressive cells do not produce much PSA , actually gleason 9 often produces less PSA than gleason 7. My husband's PSA befor RP was around 5.4 or 5.6 (I forgot exactly) , and gleaosn supposedly was 4+3 with possible IDC and cribriform but after gland was examined his gleason was actually 4+5 ! His original urologist was incompetent and did only one biopsy in 7 years before doing a second one @#%$# , so his AS was very "passive". Not all PCs are indolent and slow, some start that way but change FAST and need treatment ASAP. Please be very vigilant since you have high Decipher score : (((.

Wishing you all the best and since you are here on this forum which is treasure trove of information, I am sure that you will make correct decision when the time comes.

this narrative is precisely why there is a virtual epedemic of late stage prostate cancer presenting in older men in the last 5-7 yrs..including myself.

I was told numerous times not to worry about PC screening -starting around 2015-...'you probably wont ever get it', your prostate is small and feels smooth, I wouldnt worry about PSA stuff..etc etc'...until May 2025 when I presented with PSA of 61 and Gleason 8 with 2 lymph nodes...imagine my surprise.

Insist on PSA exam at least once a year and keep track of the numbers...be your own advocate cause aint anyone else gonna do the job..

A 3+4 with a 0.85 Decipher is dangerous in that it can rapidly progress. I had a 3+4 case with a 0.81 Decipher and consulted both local doctors and MD Anderson (center of excellence) doctors in Houston. The result was aggressive treatment, 2 forms of radiation and 1 year of ADT. See my bio for more details.

The history behind this is that 30+ years ago, oncologists didn't have as many secondary diagnostic tools, so they'd overtreat any suspect PSA just to be safe.

Now they have a crazy-rich range of tools, from better biopsies to vastly-improved imaging to germline and epigenetic gene tests, so they can get a lot of confirmation that a slightly-elevated PSA actually *means* something before charging in with a scalpel or radiation. They can literally look inside your body and even peek into your DNA.

And even if treatment is necessary, both surgery and radiation have advanced significantly and have many fewer side-effects than they did in the 1990s.

People (doctors or otherwise) who argue against routine PSA screening still have their heads stuck in the era of fax machines, Nirvana, The X Files, Netscape Navigator, and the Clinton presidency.

Fortunately, prostate cancer diagnosis and treatment have progressed a long way since then, which is why I'm still alive to write this rant. 🙂

I am 6months into this journey, with much less knowledge/experience than most on this forum.

Some thoughts from my last six months. I am not for or against any of the different treatment options.

1. PCRI and other leading youtube/internet voices push active surveillance hard and dogmaticly. I feel there should be more balance in their videos and disclaimers. There are straight-forward active surveillance and treatment situations (on both ends of the spectrum). There are unknowns and variables that need to be presented for the patients in the middle.

2. I have seen so many videos stating Gleason 3+3 will never metastasize and will never need treatment. I think these types of statements should to be “qualified” on many if these videos.

3. PCRI and others push hard and dogmatically, there is no longer a reason for a patient to choose a RP (or almost never). Statements are continually made about there is no difference in outcome of RP vs other treatments and many times vs no treatment. Very few discuss most data/studies are based on 5-15 year patient death information. Information about the chances of reoccurrence, long-term side effects of non-RP treatments, side effects of hormone treatments, etc. I know this information is presented in many different formats and studies. In our 5-20 minute youtube video life, it is almost dismissive of this type of information. The messages are slanted: Don’t ever undergo an RP. Select another treatment. If cancer comes back, take two years of hormone and do another treatment and you will still be “alive” in 10 years. The issues a patient may have to live thru are too minimized.

4. No guidelines/recommendations can cover the variation in persons and conditions. “Click-bait” videos by medical members are not optimum.

OP, I wish you the best in understanding your situation and determing treatment/AS options.