New Diagnosis

Hi Neil, sorry that you find yourself here.

It looks like you had a random hit from the biopsy on the left side, and then a targeted hit on the region of interest from your MRI, correct? Was the region of interest also on the left side? I know it changes your risk profile.

You should consider sending your biopsy of the John Hopkins for review. I had my 3+3 upgraded to a 3+4 by then, accepted by my hospital. If they also say 3+3 then that gives you a warm and fuzzy.

Looks from here like you are in the low risk category, which is good, if you have to have any cancer. What is the size of your prostate? They get that from the MRI, which then allows you to calculate your PSA density. Lower is better, as you can imagine.

Finally, consider a genomic test. Wont solely drive any decision, but helps to paint the picture of what you have.

Yeah, I’ma little confused reading your biopsy too. In my MRI fused biopsy they took 12 samples spaced on a grid, and then 3 in the PIRADS 4 lesion, for a total of 15. In looking at yours, it looks like 12 sites total, but the last one was in the lesion (region of interest) and sampled twice. This seems to overlap or be really close to the left apical base? So you had 11 on a grid and one targeted spot. Definitely ask your uro about it.

The two cores in the region of interest only really count as a single core for risk analysis purposes, so that is good. If that region was already close to your Sample C, then it sounds like you have localized Gleason 6 surrounded by some otherwise angry cells. Not the best possible result (they find nothing) but way short of the worst. You definitely have options, including just keeping an eye on it through active surveillance. Lots of time to continue your education. Become an expert!

Best of luck, Neil, and get that second pathology opinion.

Those are good comments.

Do follow up with sending the biopsy samples (all of them) to the Johns Hopkins (prostate cancer) pathology specialists. You can ask your urologist to help out with this:

Get a Second Opinion | Johns Hopkins Pathology (jhu.edu)

Johns Hopkins also has a well-recognized Active Surveillance program; I am pretty certain that you would qualify. Nothing wrong with investigating.

Neil, one point to note, according to my Uro and the literature, most PCa is in the peripheral zone (PZ) of the prostate, so that by itself is not a star flare shot into the sky.

On your comment, “I could do AS but will need to adjust my mentality”…indeed. You currently need to adjust a bunch of mentalities. :). You just found out you have cancer. Be kind to yourself.

Be patient, thorough, and relentless on getting smart on this. When you walk into a meeting with your doctor and know what he is likely to say before he says it, then you’re getting where you need to be.

Hi Neil, sorry you are here....

I will tell you what i know...Most uro's recommend radiation or RP. Both IMO are bad. Everyone's decision is personal. Some don't care about sex. I do. This is a quality of life decision. I know men whom had both radiation and RP. They wish they did not do it. Urologists typically refer to the "Gold Standard" treatment as radiation and removal of the prostate. I fired both uro's because their mindset was typically radiation/RP.

They are many other options and I suggest to find out about treatment paths. Cryotherapy freezes the prostate and has been around for years. It typically kills the prostate and is less invasive with little side affects. My brother in law had this done 12 years ago and he doesn't even check his psa any longer. His uro said the same thing radiation or removal...He chose otherwise and got Cryotherapy done in Calgary, Alberta. I asked him if he can still get an erection and his answer....its a plumpy...LoL..He is 75 now. HIFU is another option which uses High Intensity Heat to target problem tumor only. Usually done in less then 2 hours. I had this done in Toronto. Cost was 23k.Canadian HIFU facilities typically want to treat Cancer 1/2 patients whom Gleason Score is 6/7. ...and my psa prior to was 10.6 and now is 3.0-3.5. I was a Gleason 7, 2C meaning tumor on left and right of prostate. Right tumor was benign. Typically they put in a folio catheter in penis at surgery for 10 days with a bag....this is to keep urethra open so you can pee...because of the swelling, etc. It sounds worse than it is, but was not that bad. If they take away 25% of prostate you will ejaculate 25% less sperm. Yes everything works with no urinal problems. HIFU is fda approved in Canada/USA. HIFU facilities are everywhere in USA. Another treatment path you mentioned was Cyberknife (SBRT). They do this treatment at a Swedish facility in Seattle. If you have insurance, you may want to consider doing. By the way, if you do radiation or removal and at some time after decide on doing Cyberknife....they will NOT treat you. That Swedish Radiosurgery center requires all MRI/Biopsies and a Pet Scan. Pet Scan will show more then a bone scan. I am considering this treatment even after HIFU. Typically a male 70 and under, the benchmark for psa is 4.5 and under. I would phone the Swedish clinic and talk to them first. Don't wait ....while on AS. Big mistake. You only get one shot at this.!!

If you don't have insurance, it will cost 36k USD. They first decide if you are a candidate for their treatment or not. If you proceed, they will place gold markers close to prostate. They will then map out a game plan of target areas to treat. They treat with high radiation for 5 days only. I have talked to 3 individuals whom had this treatment in Seattle and their psa number continues to drop. The number (psa) is so low...its hard to believe. All 3 have sex with no issues. One uses viagra.

Best treatment out there, IMO....is Proton beam therapy. Cost can range from 60-110k USD. There is one facility in Washington state. They use low radiation for 30-40min/day...Similar to Cyberknife, however, it can be 40-60 days depending on how severe your cancer is. I know a friend of mine in Anacortes, Wa. He has no problems. His psa continues to drop. He still gets erections without the magic blue pill....LoL, He has no urinary problems.

Radiation of the whole prostate, kills the prostate. Many have rectal bleeding. After radiation, they want to give you hormone shots...You may grow breasts. What if they miss the target and hit a kidney, lung, lymph node....Well, the truth is, if you have an infection, the body will not repair itself. After hormone shots, they give you Lupron which kills testosterone.

I know 2 whom had RP and both which they never went this path. I can see going here, if cancer metalized outside the prostate or in you were a Gleason 8, Category 3/4. Also, many men see uro's every month once they had a RP. Many have urinary IN- continuance or dripping...Many wear diapers.

Consider doing a DNA test with color.com. They are based out of california and online. Its around 410 Canadian $. They test 30 genes heart, 30 genes cancer and 14 genes medication. This is the best 400 bucks I ever spent. See if your cancer is malicious? Br genes are important.

Dietary choices are Huge...less red meat, no sugar, no salt...no processed meat...limit dairy, milk....eat more plant food and vegetables, kim chee, tomatoes, ....Watch "Game Changers" on Netflix.

My advice....don't panic...make smart choices and find out other options....Phone them, get facts, testimonials.

Don't trust urologists...Yes...John Hopkins does do good work on slides.

Treat early.

Some men don't give a **** about sex...Its like I said, its personal...maybe you are 50...don't know?

If want more information, numbers or people to contact let me know.

Cheers,

Danno

Hi CentralPA, Cyberknife uses high radiation and only targets problem tumor. It does not radiate good cells. Proton beam therapy is similar, however, uses low radiation only for a longer period of time. Call it whatever you want, external beam or otherwise, point being....IT WORKS. If you have insurance do Proton Beam Therapy if they will take you otherwise do Cyberknife. Both treatments are less invasive then any treatment out there with little or none side affects. Brachytherapy is IMO, a curative treatment. Typically they do Brachytherapy on men whom are over 70. I do have one friend in Nanaimo, BC whom had this done last Dec./2021. He still does not get an erection. His psa continues to drop. He is 63. By the way, I am 68 and will be 69 this October...I don't think I am out of the woods yet, however, I make inquiries on whats out there. I am on 4 forums...Just signed up to this one today.

I don't trust urologists because my first urologist did not tell me anything. He did not suggest diet changes or other treatment paths when cancer is Gleason 6, 3+3being considered AS. That's the time to do something not when it is Category 3, Gleason 8. Typically, urologists are surgeons and they want to cut it out....thats what they do.

Thanks, on HIFU comment working for me for now,....however, I am not naïve and yes, cancer comes back in a heartbeat with a vengeance.

I did find a document comparing HIFU with RP from London....It is very interesting....They compaired approx...250 or so patients over a 10 year time line. Recurring cancer on both was less with HIFU. Typically with RP, they do salvage therapy (SRT) on many afterwards, if need be. & cancer has also been known to come back (BCR)...Biochemical Recurrence.

Cheers,

Danno

PS I have not met one urologist who suggested any treatment path other then Radiation or RP, I am now looking for my 3rd urologist.

Hi,

The Cyberknife radiation beam goes completely through the body from entrance to exit and can hit other tissues or organs during its travel. Most doctors will use a gel inserted between the rectum and Prostate to protect the Rectum from radiation. Proton beam radiation has a fixed length beam which enters the body and stop at the cancer site. It does not go past the cancer to hit other tissues or organs. Most people have less side effects with radiation external beam types but some have major side effects, so its not a clear cut with either surgery or radiation. I don’t know of any type of treatment that does not have side effects and the severity is not the same from person to person. Need to study the various treatment types and know what the possible side effect could be.

I did have robotic surgery and it did take about 1-2 years to be hard enough to penetrate. Was still having sex but not just penetration, had gradual improvement over the course of my recovery. There is no set answer on that, it goes from a few weeks to not at all to return to a usable member. But its your choice based on your situation and consultation with your medical team and family.

Dave 3+4

@neilm you wrote...I am somewhat perplexed of the complete meaning of the acinar proliferation or the Hipin in my result ( but I know its not good ).

Here's my understanding. The Acinar and the HGPIN are not cancer. They do often correlate with cancer, though, so if you had a biopsy and they found only that, you'd worry there might be some unfound cancer. But your cancer was found. Search on "Significance of Atypical Small Acinar Proliferation and High-Grade Prostatic Intraepithelial Neoplasia in Prostate Biopsy"

As far as RP goes, I would definitely not say it is "the" gold standard treatment. I would never get it myself.

I expect your Uro will recommend AS if they are following the latest guidelines.

@Danno99Advocate the HDR brachytherapy (high does rate) is a one and done procedure. Nothing left in the body. That would be my choice if I wasn't on AS and I hadn't had a HoLEP.

I saw this on twitter, from a Urologist, with the caption “Me when prostate cancer surgeons start talking about their postoperative ED rates"

https://twitter.com/kjdelay1/status/1537586312303112192?s=21&t=PpHoyRk_WCiYLDelUGRNKg