My Story

I'm 52 and was diagnosed with prostate cancer in February 2024. Family history is bad: father and maternal grandfather died of prostate cancer; mother and her sister died of breast cancer; three first cousins also diagnosed.

I had joined this forum about 5 years ago when I was first referred to a urologist by my PCP. My PSA had gone over 3 but nothing showed on a DRE and my PSA dropped to 2.5 the next month. In 2021 my PSA had risen to 5.1 but the DRE was still negative and an MRI only showed benign enlargement with no PI-RAD scores. Subsequently, my PSA dropped to 3.6 the next year and nothing was done. It went back to 5.1 this past December and for the first time the DRE showed something was wrong. I had an MRI and this time it came back with PI-RAD 5. I had a transperineal prostate biopsy done in January with four cores coming back as cancerous. Three were 3 + 3 but one was 3 + 4 although the 4 was less than 5%. Two perineal invasions were also identified.

I met with my original urologist who recommended a robotic prostatectomy. He did mention the possibility of some AS but was hesitant. He strongly recommended against hormone and/or radiation therapy given my age and good health.

Then in mid March I met with a second urologist who like the first urologist, did not think a PET scan was necessary nor was he concerned about the perineural invasions. He also recommended against hormonal or radiation therapy. His tone was more serious though and he felt AS was really not an option given my family history. He didn't think the genetic test would be that helpful given the family history and especially because it seems the cancer took off over the last year. I asked about possibly waiting until the fall so I could have the summer without recovery but he was hesitant about that feeling like it's possible the cancer could significantly spread by then. He said he's done about 1000 of the robotic prostatectomies and has done them for the last 11 years.

To fully cover my bases, I met with a third urologist at the end of March. To my astonishment, he strongly recommended - AS (active surveillance) with PSA tests every 6 months. He brought in new data that the others didn't mention called PSA density which in my case was at .09% and anything under .15% is considered good. He said my amount of "4" (the concerning grade of cancer) is so small that it would be a tiny dot. He warned me EXTENSIVELY about side effects of surgery. Only a 60% chance that I would ever have penetrative sex again. He did say that due to my avid cycling, I may suffer no urinary incontinence at all.

I guess I took this as good news but now I'm so confused my head is spinning. I was planning on booking surgery thinking that the third urologist would also recommend it. Now I'm left in the vast unknown that is called "favorable intermediate grade prostate cancer". I watched some more Youtube videos about this and I have to say most seem to back the opinion of the third urologist. In fact one of them said the same thing - that in a few years, the official recommendation is going to change to AS for this type of patient. The third urologist I saw was extremely thorough. His dad also died of prostate cancer so he is very familiar with the effect that family history can have on decision making. He has done 2300 of the robotic prostatectomies. He even said that his bias should be to just recommend surgery but he didn't. He said even if you put off surgery for 3 years, that's 3 years of normal sex and normal everything. (Except, of course, my having to live with cancer in me.)

He, like the other two urologists, felt the perineural invasions were not a concern. He also said the family history is not a definitive reason to not seek AS. This is a break with the second urologist.

So, now it's almost June and I think I should be getting another PSA test. The last urologist recommended waiting a full 6 months since the biopsy done on 1/29/2024 but I don't know if I can stand to wait until late July. I am very interested if others who might also be in the 3 + 4 favorable intermediate category could share their stories. It's bewildering to get two totally different opinions from competent urologists.

JasonB176,

First of all I sorry about your diagnosis.

A few things

1) As a guy who was also diagnosed at a relatively young age, you should be taking a no prisoners approach. You may have like 50 years of life left after this bump. PCa doctors and research normally are dealing with guys in their mid 60’s and older

2) You were very diligent!!!! Congrats on that.

3) With a genetic history of prostate cancer you can get a *free* genetic test (spit in a tube, very simple) by enrolling in this research study called Promise ( https://www.prostatecancerpromise.org/ It will tell you if you have any mutations like brca2 that might be useful later.

4) Some send their biopsy slides to Johns Hopkins for a second opinion on how the images are interpreted. It used to be called “Epsteins lab” but i think he retired or left after some controversy. Regardless, looking at these slides is as much an art as it is a science and the lab there was considered the best at looking at the specimens.

5) Nearly all urologists will recommend surgery but since you are young you can bounce back quickly.

6) Not to make your head spin any faster but you should talk to a radiation oncologist.

7) There are however risks/potential side effects with any treatment you choose. Look at the list of potential side effects and ask yourself which ones do you think you can live with.

8) You should try to get someone to order a psma pet so you can be more confident the pca is confined to the prostate before you decide

9) Continue to act. Your actions likely saved your life.

Jason, in your quest to cover all the bases, you've talked to surgeons about radiation therapy. Please, go see a radiation oncologist at a center of excellence. You might find that your best treatment choice is there.

If you don't, and have surgery, and you have the ugly side effects, you may always wonder if you made the right decision.

Note that I'm a 'surgery guy', who has had a great outcome 9+ years out. Please go visit an RO. You'll be glad you did.

Jason, welcome back.

Not much to add, good advice above especially Hal’s comment about not talking to urologists about radiation.

One thing struck me though… you said…. “ I asked about possibly waiting until the fall so I could have the summer without recovery but he was hesitant about that feeling like it's possible the cancer could significantly spread by then”

With a G(3+4) and less than 5% grade 4, I would run fast, that sounds to me like a sell job. Prostate cancer that is low or low intermediate grade doesn’t spread extensively in a couple of months. I’m not saying not to act sooner rather than later, I’m just saying sounds like the second urologist is using scare tactics.

“Favorable intermediate category?” I am not sure I would ever want to use the word “favorable” with respect to cancer. Nothing favorable about it. You have been very diligent with your urologists, but not surprising they might differ. I would not think about AS with a Gleason 7. A good friend died of PCa. His Gleason never rose above 7. A 7 is not an 8 or 9, but it is still disease. Also, if you opt for surgery, do not be concerned about a long recovery time. I was up and walking around the hospital 12 hours out from surgery. The catheter, usually a week, is a bummer, but time limited. Most guys deal with incontinence very quickly. As for the Thing We All Worry about Most, your age puts you in a good position for recovery. Best wishes… Bill

I encourage you to ask your friend about the details of his diagnosis, if you feel comfortable doing so. Especially his Gleason score. And the final pathology post surgery. I am hoping his biopsy didn't show just small amounts of G6. This scenario wasn't uncommon years ago. But, I guess it isn't really that important.

What is important is that you consult with an RO face to face.

The old selling point that you can always do radiation if the surgery fails is deceitful and I wouldn't trust a Uro/surgeon who tries to sell it. If the radiation will do the job after failed surgery why not just do radiation to begin with? The radiation can be adjusted to hit the margins in a way that surgery cannot.

I think most probably surgery has a much higher possibility for catastrophic outcomes, specifically incontinence and ED.

Good luck however you choose!

Jason, Every treatment option has treatment risks. It’s important to understand those risks and select the best treatment option for each personal situation. Most urologists down play the risks associated with surgery. Far too many guys never talk to a radiation oncologist and simply stick with their urologist and suffer through the consequences. Modern beam radiation is extremely effective and offers very low risk of long term unwanted side effects. SBRT can be delivered in five treatment sessions or even fewer. It’s a choice that more low and intermediate risk guys should consider. The best treatment decision is an informed one. Best wishes…Terry

Hello Jason and welcome back but sorry you had to come back. Some men do very well with AS with a diagnosis such as yours so I certainly won't say "no". My personal make-up would not permit me the patience to do with a Gleason 7 but maybe this could work for you in a rigid and stringent AS program.

On the other hand, you have nothing to lose by discussion you case with experienced radiation oncologists. They are unlikely to recommend any "messing with hormones" given your stats. There are a variety of radiation treatments that are likely to cure you the first time: HDR Brachy, LDR Brachy and SBRT. Each of these may be practiced by different docs so you may want to go to multiple RO's to complete your homework.

Dr. Google can be your friend but he/she misses a lot...

Jim

centralPAdude said...
I had an MRI and this time it came back with PI-RAD 5. I had a transperineal prostate biopsy done in January with four cores coming back as cancerous. Three were 3 + 3 but one was 3 + 4 although the 4 was less than 5%. Two perineal invasions were also identified.

You didn’t say if the positive biopsy cores were all from the index lesion. Are they?

Also, how big is your prostate? Where is the index lesion? On the periphery or in the interior? This info matters, and could even steer you to a focal therapy.

I am on AS, being a 3+4 with less than 5% being 4. Favorable Intermediate. This was my urologist’s strong recommendation, and he’s done 2000+ RALPs. I’m a special case, though, in that I had a procedure to treat BPH which gave a good look at the pathology, and dropped my PSA way down, making it a better indicator if the PCa progresses.

I'm still learning some of the terminology so I'll quote from my MRI and biopsy:

The prostate measures 3.7 cm AP x 5.6 cm transverse x 5.0 cm
sagittal. This yields an estimated prostate volume of 55 cc.

Lesion analysis:

Lesion 1:

location: Right peripheral zone posterolateral mid gland (series 601,
image 18)

Size: 1.8 x 1.1 cm

A. Prostate, Right Medial Apex:
ADENOCARCINOMA OF PROSTATE, GLEASON SCORE 3 + 3 = 6/10 (GRADE GROUP 1), INVOLVING about <5% (1/1 CORES) OF THE BIOPSY, MEASURING about 1 MM IN LENGTH.


B. Prostate, Right Medial Base:
ADENOCARCINOMA OF PROSTATE, GLEASON SCORE 3 + 4 = 7/10 (GRADE GROUP 2), INVOLVING about 30% (1/2 CORES) OF THE BIOPSY, MEASURING about 9 MM IN LENGTH. PERCENTAGE OF PATTERN 4 = 5%.
PERINEURAL INVASION PRESENT.


C. Prostate, Right Lateral Apex:
ADENOCARCINOMA OF PROSTATE, GLEASON SCORE 3 + 3 = 6/10 (GRADE GROUP 1), INVOLVING about 5% (1/1 CORES) OF THE BIOPSY, MEASURING about 2 MM IN LENGTH.


D. Prostate, Right Lateral Base:
BENIGN PROSTATE TISSUE.
NO CARCINOMA SEEN.


E. Prostate, Right Lateral:
BENIGN PROSTATE TISSUE.
NO CARCINOMA SEEN.


F. Prostate, Right Anterior:
BENIGN PROSTATE TISSUE.
NO CARCINOMA SEEN.


G. Prostate, Left Medial Apex:
BENIGN PROSTATE TISSUE.
NO CARCINOMA SEEN.


H. Prostate, Left medial Base:
BENIGN PROSTATE TISSUE.
NO CARCINOMA SEEN.


I. Prostate, Left Lateral Apex:
BENIGN PROSTATE TISSUE.
NO CARCINOMA SEEN.


J. Prostate, Left Lateral Base:
BENIGN PROSTATE TISSUE.
NO CARCINOMA SEEN.


K. Prostate, Left Lateral:
BENIGN PROSTATE TISSUE.
NO CARCINOMA SEEN.


L. Prostate, Left Anterior:
BENIGN PROSTATE TISSUE.
NO CARCINOMA SEEN.


M. Prostate, target #1:
ADENOCARCINOMA OF PROSTATE, GLEASON SCORE 3 + 3 = 6/10 (GRADE GROUP 1), INVOLVING about 5% (2/4 CORES) OF THE BIOPSY, MEASURING about 4 MM IN LENGTH.
PERINEURAL INVASION PRESENT.

It's bewildering to get two totally different opinions from competent urologists.


It's a multi-objective problem. Objectives include side effects (near term & long term), mental anxiety, lifespan, risk & uncertainty, quality of life, cost in time and money, etc. Every potential treatment course results in different values for each of those things, with no treatment course being better than all the others in all of the objectives. Every choice involves trading things off. Every choice.

The owner of the weights given to those objectives, that enables you to pick one choice as better than another, is you. It has to be you, although I guess you can farm it out to the Urologist.

To flip it around, pretty much any choice you make is justifiable via a set of weights/priorities you set on the different objectives. There aren't that many purely bad choices. There are just different angles on the problem.

It's tough, man...you make your choice and you roll the dice.

JasonB176,

Good luck with your meeting.

I would just say you ask the RO their take on hormone therapy for your case.

You want to *maximize* your chance of success. HT would not be long term. Probably like 6 months or so (I am not a dr). You are fit and active. To beat the side effects of HT you just need to stay active. You can live with anything for six months. To put things in perspective, say you started hormones tomorrow, hormones would start wearing off by New Years day.

Consider the alternative if radiation alone fails. Down the road that may mean hormones for the rest of your life.

Nobody likes hormone therapy, but you are only 52.

So ask the RO their opinion.

JasonB176 said...
He also confirmed that I would not need hormonal treatment at my current stage and PSA level. He said Gleason 4 + 3 and/or PSA over 10 would necessitate hormonal treatment.

That is excellent.

The gel is called SpaceOar.

Nobody can say you did not do your due diligence!

My biopsy in September 2017 showed one 4mm core of GS8.

I choose Brachy Boost (low dose) and opted out of HT. It was deemed optional at BCCA with a very small amount of GS8.

My last PSA in September 2023 was 0.089.