Newly diagnosed: What influenced your treatment decision?

If erections and continence is important to you check out HIGU or other focal treatments

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When I saw the term " entry level tumor " being used I couldn't help but notice on this forum that virtually every everyone here has been diagnosed with some degree of cancer and almost all of them elect to have actual treatment - regardless of the stage . When researching this topic ( after receiving PSA tests of 11 at age 67 ) I would say that almost half of the articles I read recommended watchful waiting for the lower Gleason scores and stage 1 or sometimes stage 2 cancers and there were plentiful warnings of overtreatment sprinkled in with reams of statistics basically saying that if you have the later stage cancers you should act promptly with treatment but with the " entry level " cancers you are better off waiting and watching . I just had an MRI and I have a 5mm lesion on the left side , contained with no spread or breach of the prostate " wall " . At this time it is not growing quickly and the PSA has been consistant for the last 9 months ( actually down a bit ) . I guess my question would be is it unusual to prefer to play the odds and not get treatment when the statistics are overwhelmingly ( 95% + ) that you will survive without treatment for the next 10 - 15 years with the " entry level " cancer - as it seems like most of the people on this forum opt for immediate treatment ( despite the harsh side effects ) for even those beginning stage issues ?

@ovstampco -- I think you've asked a valid question. Speaking only for myself, my response has 2 parts: First, I needed to deal with PC in a way that I was emotionally at peace with. For me as a reasonably fit 70 year old with no other conditions, that was actively trying to chart a path with both survival AND quality of life. Yeah, I swung for the fences since I was lucky enough to still have that option. Also, I was lucky enough to be in a position to go to a cancer center of excellence and have very high quality services available for the treatment I chose. So far, the results have exceeded my expectations and (possibly even more importantly) I'm very much at peace with my decision. Who knows what the future holds, but whatever it is I feel I made the best decision for me at the time with the information I had. Part 2: I don't agree with your statement "survive without treatment for the next 10 - 15 years". I may be wrong, but when I looked at the results of the UK long term study that's so often cited in this context, I read that only 1/4 of the participants who started in active monitoring ending up not having their PC treated by the end of the 15 year period. Specifically, I read the following two sentences: "Radical treatments (prostatectomy or radiotherapy) reduced the incidence of metastasis, local progression, and long-term androgen-deprivation therapy by half as compared with active monitoring. However, these reductions did not translate into differences in mortality at 15 years, a finding that emphasizes the long natural history of this disease. " So while the active monitoring folks had the same life span, I think you're mistaken that they didn't achieve that without later having significant treatments, with twice as many of the initial active monitoring participants ending up with ADT (as well as radiation or surgery). So I don't believe they reached similar life spans "without treatment for 10 - 15 years". This really spoke to my concern about quality of life. Of course, I'm not a medical professional, so maybe I misread or misunderstood the findings from the UK study. But this was part of my decision.

Hi thanks for your input ! That's why I posted here I wanted to get more perspective . You may be right I probably just read a summary statistical finding and they weren't clear on whether or not the people with the early stage cancers eventually did get treatment - that's what confused me ... like I said there are reams of stats and I'm not smart or focused enough to absorb all the findings and understand ..... so I post here and let the smarter guys explain the points I'm missing . I think for the time being I will watch and wait ( but first get input from my urologist ) unfortunately I have a regular health plan with Kaiser - no access to a " center of excellence " - I'm sure that my facility has plenty of experience and know what they are doing . Thanks again for your comments and perspective .

Your welcome! Hey, we're all trying to figure this out. It's complex, plus things are changing rapidly. Keep asking those questions! Best wishes on your journey!

There are lots of factors to consider. If I were diagnosed with a so-called "entry-level tumour" at age 80+, I'd probably opt for just active surveillance, since I'd be at fairly high risk from the treatment itself.

In my 50s with no other health issues, I'd almost certainly treat it aggressively, since I'd have many more years to protect and I'd be less at risk of injury from bone loss, heart attack, etc. as side-effects of ADT.

In-between (like you), it's a tough choice.

(In my case, I was diagnosed with stage 4 oligometastatic PCa in my 50s, so there wasn't really any decision to make; just throw the kitchen sink at it.)

Yes , its like trying to figure out a math problem with a million variables - it's also hard because I really don't have much of a baseline , I didn't even know what a PSA was before February . At 67 my PSA was around 11 .... it may have been at 11 for a decade I'll never know . The speed of the progression is an important variable ( imho ) . This site has been very helpful as my medical provider just told me I needed a " blind biopsy " because of my elevated PSA score - the people on this site said the best thing to do would be to get a 3T MRI first - which my medical provider said would be inappropriate .... but after playing " hardball " with Kaiser my urologist finally said okay to the MRI . Was your situation similar to what I'm going through ? You said you are around my age what were your stats when you started with this situation ?

You asked, so here's my stat's history: My brother had aggressive PC 30 years ago in his late 40's. So I've been getting my psa every year since then so I had a good baseline. But it hasn't all been smooth sailing. About 20 years ago my psa spiked from about 1.0 to 4.0, and over 6 months I had 2 of the old anal prostate biopsies (ouch). All clean, and 6 months later my psa dropped back to about 1.0. Since then it's slowly risen to 2.89 in early 2023. Then in 5/23 it jumped to 3.62, so my urologist asked for a retest in 6 months. At 11/23 it was 4.25, so he ordered the MRI and another retest. The PSA retest dropped to a 3.26 (false signal), but the 3T MRI showed an 8 mm lesion with a PI-RADS 4. Then I had an MRI Fusion biopsy with the idea being the MRI fusion biopsy gives the best chance of the biopsy actually sampling the lesion. The reason I really wanted the MRI fusion biopsy was because if the biopsy came back as non-cancerous, I really wanted confidence they had sampled the lesion. However, the biopsy came back with multiple 3+3 = 6 and 3 + 4 = 7 samples, so (partially because of my brothers history with aggressive PC) I elected nerve sparing RALP in late June 2024. The prostate biopsy after surgery found both Cribiform and IDC, indicating likelihood of aggressive treatment resistant cancer in prostate, but the margins were clear. So that's my stats. Feel free to ask anything else. Best wishes.

Here is a list of things to consider:
1) Request a decipher test on the tissue from your biopsy. This is a step beyond the Gleason score and helps determine how aggressive your cancer is.
2) Give thought to getting a second opinion from a Cancer Center of Excellence. Here's a link:
https://www.cancer.gov/research/infrastructure/cancer-centers/find
3) If your tumor is contained within the prostate, focal treatment is something to consider. These treatments use a variety of ways to kill the tumor(s) without removal or radiation. Look up things like HIFU, cryotherapy, Irreversible Electroporation (IRE), and others.
https://www.medicalnewstoday.com/articles/focal-therapy-for-prostate-cancer
My PSA score that got the urologist's attention was 4.25. A follow-up MRI indicated two tumors. My biopsy showed a Gleason score of 3+4=7 (intermediate risk) and my decipher results indicated low risk, making me a candidate for focal therapy. I had the IRE treatment in January 2024. After the treatment, I had some relatively mild incontinence which has mostly cleared up. I also had some blood in my urine for about six weeks after the treatment, but that has totally cleared up. My PSA in April was down to 1.53. I'm scheduled for a follow-up MRI in August to see how well the treatment worked. My doctor said that if there is an indication that the IRE was not totally effective, I can consider an addition IRE treatment, removal or radiation.

Focal treatment is definitely not for everyone, but with the proper set of circumstances, it would be an alternative worth considering.

Best wishes for a great outcome for whatever treatment you decide upon.