Worth waiting on active surveillance?

Welcome to our club, that none of us wanted to join. On the face of it, AS might be a good choice for you. It would help if you could copy in the actual biopsy report that describes the core locations and what the finding were.

Having 7 positive cores might disqualify you from at least some AS programs. That being said, I'd suggest you go to the front page of the forum and read the two 'sticky' threads--to the newly diagnosed. After that, it's important that you get a second opinion on your biopsy slides--the best place to send them is Johns Hopkins in Baltimore. There is information in the 'newly diagnosed' sticky thread on how to do that.

After that, let us know where you are located. If you do decide to seek aggressive treatment, please do not go with your first option--remember that Urologists are surgeons, and they do surgery. There are other treatment options that you should look into--and for those you need to talk to one or more radiation oncologists about those options in your case.

The point of AS is that it is active: You keep getting regular PSA readings, you have a follow up biopsy within a few months--targeted by the MRI. If things change, you then get your aggressive treatment. The value is for low-risk cases--about 1/2 of the men on AS never need further treatment. For those who do eventually need further treatment, their long-term survival and side effect profiles are no worse than for low risk men who treated immediately. In short, it's not 'just waiting'--it's an active process that is really keeping a close eye on things.

Hang around, read some of the other threads, more guys will be along to comment.

As Hilbert said, Welcome to the place none of us wanted to be....
Butt I think the best place if needed....
You have time to make a judgement don't rush....
The out come of Surgery and Radiation and Hormone treatment are about the same at the end....
Good luck and God bless..

I noticed you made a couple of references to surgery as your other option. PLEASE investigate the several types of radiation therapy available - perhaps some are compatible with your scleroderma.

It costs very little to get your biopsy slides reviewed by Dr. Epstein for a 2nd look. Surprised no one suggested that yet. I don't know anything about scleroderma (and many other things too) but I would talk with the experts at a big cancer center for some ideas. Where are you located & where did you go for opinions?

PCa has an affinity for growing into and along the fine nerves in the prostate (an perhaps takes these are a route for growing out of the prostate). This perineural invasion (PNI) is seen in as many as >80% of men somewhere in prostates examined after surgery. It's significance as a risk factor in recurrence when present at RP but not at biopsy is somewhat debated. However, when seen in biopsy cores, it is associate with a higher risk of finding adverse pathological features at the time of surgery, such as extraprostatic extension, as well as increased risk for biochemical recurrence (return of a rising PSA). Here is a recent review article:

Impact of biopsy perineural invasion on the outcomes of patients who underwent radical prostatectomy: a systematic review and meta-analysis. (2019, Review)

Prognostic value of perineural invasion in prostate needle biopsies: a population-based study of patients treated by radical prostatectomy (2020, Full Text)

AFAIK, there is no connection between PNI and PIN. The latter is pre-cancerous, atypical cells, but has no importance once you have a PCa diagnosis.

Djin

First of all....So good for you for being proactive!

One observation I have is “two small pirads4 lesions” and “8 out of 12 cores” seems inconsistent.

My opinion?

You are just 52 years old.

You have an excellent opportunity to eliminate this problem.

Eliminate it with extreme prejudice.

Want some motivation?

Read some of the stories about guys dealing with advanced, often untreatable PCa and be thankful for an early catch, seemingly confined to capsule, G6.

https://healthunlocked.com/advanced-prostate-cancer/posts

I'm probably not suited to AS but if the only other alternative was surgery I could adapt to uncertainty

Hello als and welcome. As others have suggested, your first step should be to get a second opinion on your biopsy slides from Dr. Epstein at JHU. That way you will be more certain of having a correct pathology.

Beyond that, even if Epstein confirms your biopsy, you should consider some radiation options. Not all radiation is the same and you seem to be a good candidate for LDR Brachy and HDR Brachy which have less chance of interacting with your Scleroderma. So please do your homework and see specialists in those protocols.

Good luck.

Jim

Keep in mind that the track record of the stricter AS programs are excellent because about 50% of men leave the program for treatment when the protocol dictates. When I asked my uro what protocol he follows with his AS patients, he said his is probably closest to JH's, one of the strictest. He said some of the others are pretty "loosey goosey" (his words). I'd be be hesitant about AS in the OP's shoes, with 7 positive cores, an additional 2 PIRADS 4 targets that need investigation, no genomics testing, a PSA of 5, and a suspicious PSA density.

I'd note that the survey choice "Go onto active surveillance and wait for targeted biopsy" isn't really accurate -- waiting for a scheduled biopsy because of the MRI findings, isn't "active surveillance" yet, it's just.... waiting. An AS protocol would require the PIRADS 4 lesions be investigated before program entry. If you don't schedule the biopsy and do nothing, it's "inactive surveillance" or "watchful waiting" (for symptoms).

If you get G6 (or higher) results from Dr. Epstein, and decide on surgery, another biopsy isn't valuable, because the post-op path report will be the definitive word. If you go choose RT, then a biopsy has value, since it will be the last information you get about your PCa pathology. Perhaps the best choice is to first do the biopsy to investigate the PIRADS 4 lesions and then send all slides to Dr. E. There certainly is no extreme rush to treat -- your PCa has been around a long time.

Djin

Well, if you're in the Boston area--Dana Farber and Mass Gen both have good reputations--there are some guys here who have been treated there. If you're going for surgery--that's what you want, someone who as done a lot of them. Don't be afraid to ask what his/her personal track record as far as side effects is--most are willing to share it.

With the Schleroderma, I can see why avoiding radiation is a consideration. Hang in there. Do ask to have your biopsy slides sent down to Johns Hopkins (Epstein) for a second opinion. Some percentage of the time the second read does come back with an upgrade---and it's not uncommon for post-surgical pathology of the whole gland comes back with an upgrade--I got that joyous event in my situation.

This is not aa time to rush. The urge to cut it out is usually very strong. Surgeons reinforce it. Despite any speculation, you have Gleason 6 scores and that's all you know. Get more MRIs, more biopsies, genetic tests, meet with doctors of all specialties not just surgeons. I spoke with 9 doctors before I made my choice.