Has Anyone Elected for No Treatment?

There is no easy answer to this. If you have a Gleason score of 3+3, then you can probably go on active surveillance. If it’s higher than that, then you probably need treatment and if you don’t get it, your progression free survival is limited. How much it is limited is based on where your cancer started in strength and location in your body. If you get no treatment, you have no idea what’s going on.

Dying from prostate cancer is extremely painful. My father had his teeth ground down and crowned without Novacaine. He came home for dinner every night, and you’d never know it. He was on so much morphine a few weeks before he died of prostate cancer,that he couldn’t communicate at all.

Are you prepared to live like that?

Hi Jeff, thank you for your advice. I appreciate it a ton. I was wondering if you had seen my first post called "Worried and Looking for Advice"? Would you mind reading that post and let me know if you think Im over worrying at this stage?

Yes, dying from any cancer is often painful.

Last October, my older brother (74y) died of pancreatic cancer. It was not a good death. (I was there much of the time.) He was on morphine for some time towards the end.

Just last night, my daughter-in-law's sister (49y) died of Leptomeningeal cancer. It was not a good death. She was on something stronger than morphine for the past week.

I assume that it’s the same with prostate cancer. Something to avoid (and seek treatment) if possible.

I was diagnosed with PCa in April 2012 at 56y with a localized, 3+3=6, PSA of 4.2, and chose active surveillance.

I made a commitment that should my PSA ever reach 10, or my Gleason ever reach 7, or a biomarker (genomic) test ever have a negative result, that I would then seek active treatment.

I was on active surveillance for about 9 years, not only tracking PSA every 4-6 months, but also getting biopsies every 2-1/4 years, regularly calculating the lesser-tracked numbers (% Free PSA, PSA Doubling Time, and PSA Density), and getting a genetic (germline) test, all to have better insight into what might be lurking unseen.

Eventually, my Gleason did hit 7 and a biomarker test indicated that I had “exceeded the threshold for active surveillance.” (My PSA never exceeded 8.05.)

It was then that I started active treatment (in April 2021). Treatments were uneventful and today I’m doing great.

These days, it’s realized that even a 7(3+4) with a very high % of “3” and no other risk factors might also be a candidate for active surveillance. So, the decision on whether to choose and stay on active surveillance depends on your specific numbers and other risk factors.

Good luck!

Diagnosed in October 2023, after PSA of 7.8 PSA & 3, 4 & 5 PIRAD lesions found in an initial mpMRI.

Targeted TRUS found 7/15 cores positive…five 3+3 (5-10%) & two 3+4 (10-20%).

My Decipher score was 0.22 and the GRID report's Clinical-Genomic Model indicated “Low Risk" and recommended active surveillance, to which my urologist agreed.

Increased my running regiment to three 5K’s/wk, along with occasional HIIT, and implemented a whole plant food diet for the first three months to lose 25 lbs and reach a BMI=22.5 by Feb ‘24. At that point, I changed over to what is probably best described as a "heart healthy" diet and have maintained the lower weight/BMI ever since.

My PSA dropped 25% after 4 mths and has stayed at the new (lower) level for the last 18 months. My most recent PSA was at it's lowest since pre biopsy, at 5.6.

A 12 month follow-up MRI, compared by the same radiologist, indicated that the original PIRADS 3 and 4 lesions were no longer visible and the PIRADS 5 had shrunk and its T2 & DWI/ADC signals were reduced from “moderate” to “mild”.

Since March 2025, I modified my running regiment to maintain my long distance running in "Zone 2"....I always run on local track and use Hoka Bondi 8's (extra cushioning) to ensure joint safety.

My general health (other than PCa) has improved significantly, as other chronic issues have disappeared.

Overall, I'm convinced the aerobic cardiovascular exercise has been the key driver to my success (see ERASE randomized clinical trial results).

Disclaimer: I'm not a physician and your results may vary.......

I considered this path as an option, but after doing the research I realized that the initial treatment was worth it but had some thoughts of no longer seeking treatment once the disease got to a certain point or if the impact of it changed my quality of life so much that it wasn't worth it.

To that end, my research on the matter indicated that prostate cancer death is quite painful and the last month or two is you basically being bombed out of your mind on drugs, incoherent as you then waste away. Of course, during this time someone has to care for you and watch you die a probably avoidable death. That last part is the tough one, I would not want to be a burden on someone.

Having watched several family members die of various cancers, including my mother wasting away for years ON treatment, I decided I would not do that. I told my wife "I'll do one round of treatment but won't spend my life getting treated only to have no quality of life". Well, here I am, 7 months after my treatment and it wasn't so bad and my outcome was poster-child worthy so to me that hit the reset button, I would go another round and another until it's too much to bear and then I might consider other paths.

Consider talking to your family and counselors before you make your final decision on the matter. Many of us grew up thinking cancer treatment was straight from hell, but things have improved greatly since those days.

It’s good to hear that you have looked at deaths door and decided it’s not for you.

Yes, it can be a pain to take ADT, But after nine years of it, the side effects are just not that bad. The only noticeable side effect other people see is the occasional hot flashes. The treatments we are getting just seem to have minimal damage to daily life Unless the cancer Spreads a lot and we need chemo or Pluvicto. In that case for a short time, it’s definitely a disadvantage, but it’s a short time and can extend life.

Stick with it, Much better to have a progression free survival.

These comments all offer the tremendous variability in how/why, and how fast, a cancer progresses to the point of death...or not. You can only get several medical opinions from what are hopefully the "best" in their field locally...or even travel to well known facilities like Mayo Clinic, Johns Hopkins, Cleveland Clinic, UCLA, etc.
My personal experience is that my father lived to 99 years and 10 months WITH prostate cancer that was never even treated. He was too old for prostatectomy when he was finally diagnosed, but was told he had had it for at least 12-15 years, likely longer. But he suffered non-stop UTI's and hospitalizations. My maternal grandfather was diagnosed in the mid/late 1970's. He would go once per month and get a direct injection into the prostate (Lupron???). I was a young man and was never told many details. He never had the prostatectomy either, and he lived to age 96, dying from Alzheimer's, not prostate cancer. This is common enough that I have heard for decades that "if you have prostate cancer, you'll live long enough with it that you'll likely die of something else." But then, that is not always the case. I recall the father of a friend of mine. He started having lower lumbar back pain in his early '70's. He just thought he was getting old. This was in the days before there was a PSA test. He was dead within a month. The lower back pain was caused my massive lymph node invasion and metastasis throughout his pelvic area. He had ket his urination difficulties private. No one knew he had anything happening except "back pain" from being an old guy. It cost him his life. But that was the late 1970's. We've come a long WAY since then as informed patients and with incredible advancements in technology, treatment, surgery, etc.
Bottom line...you just don't know how "your" prostate cancer will compare to others. I highly recommend getting the Decipher Test though. It uses your biopsy (or surgical) prostate tissue to screen for 22 different prostate cancer-specific genes and mutations. You are given a "score" that relates to the severity of your cancer and the likelihood of progression or recurrence, plus a likely determination of likely longevity for you. Good luck.

I think my experience was similar to yours. One treatment to try to stop it but I don't think I'll do anything if it comes back. My QOL is probably 70% of what it was pre-treatment (treatment ended 10 months ago) and I've heard it can take 1-2 years to feel "normal" again so we'll see.

What sort of treatment did you do in the end?