Anyone following a wait and see with a Gleason 3+3

Has your PSA continue to rise while you were getting those testosterone injections, Or has it stayed pretty much about the same or risen very slowly.

After having your Testosterone injections. How high does your testosterone actually get?

I guess they figure, people on active surveillance have full testosterone, so why not give it to you too. It definitely doesn’t seem to be as problematic to do, as it would be with people who have active prostate cancer.

For the previous 12 years that I had been tracking my PSA, it rose from 1.3 to 4.0. At that point I had a biopsy that showed a Gleason 6(3+3). I chose active surveillance.

Over 9 years, I had 3 more biopsies, the first 2 were 3+3, the last one was 3+4. Over that same time I had PSA tests every 4-6 months; my PSA increased from 4,0 to 8.0.

Also, a Prolaris biomarker test indicated that I had “exceeded the threshold for active surveillance.”

It was then that I decided on active treatment (proton radiation).

Hi Jeff, before the cancer the testosterone injections took me within the normal range for men my age. I was off the T for three months and suffered from the symptoms of low T.

I just started back, and the Doc is expecting the PSA to rise some. But this alone is not an indication that the cancer is accelerating. Even without prostate cancer, I am told that testosterone injections cause PSA to rise some. I asked him if any of his patients on this regimen have seen an acceleration, and he told me that it is not statistically significant. The prevailing school of thought is that testosterone is to prostate cancer as gasoline is to fire, based on a study in the 1940's. However their are emerging studies that are showing this is not necessarily the case. He is one of the few Urologists that do this and he has had good success. Most urologists stop testosterone, or prescribe medicine that lowers testosterone levels when prostate cancer is detected. There are men who are ok with low T, and there are others who suffer more severe symptoms. Pretty much only places that will prescribe T for men with hypogonadism and early stage cancer are at these cancer researcher centers.

Considering that everybody else on active surveillance has normal testosterone levels, It sure shouldn’t harm you to get yours normal again.

It definitely sounds like the doctors are overreacting, If they don’t think you should have testosterone when other people have it, in the same situation.

While I understand your dislike of low testosterone. The fact is that was the most effective way to stop prostate cancer from growing and spreading for people that are just getting started with prostate cancer recurrence or having Metastasis at diagnosis.

A lot of doctors don’t immediately put people on ADT when they have prostate cancer, it depends on the treatment they pick and where they go for it. A couple of months before radiation they frequently do put them on it because it reduces the size of the tumors and stops them from growing . It seems that when it comes to surgery, there’s a mixed result. I know before surgery I didn’t have ADT but before radiation they gave it to me, but just one shot.

I have been on ADT for eight years, Sure, there are some side effects, Hot flashes drive me nuts, and there are so many other things, but it sure has helped to keep my cancer under control.

It is true that in the last couple of years Darolutamide and Enzalutamide have been used without ADT and worked very well for many people. The studies that showed they can be used alone are very recent. We didn’t have a lot of choices just a few years ago. The Enzalutamide Arches Study did show that people had longer progression free, survival with ADT plus Enzalutamide.

Thanks Brian. What was you experience with Proton as they are touting it as the best thing to come out of radiology in many years. Side Effects? After the treatment did it cure it?

Proton has been used for treating various solid cancer tumors for quite a while. But, there are only 46 active cancer treatment centers in the U.S. (https://www.proton-therapy.org/map/) so, not as much proton is being done compared to photon.

As for side-effects —> Though recent studies (COMPPARE and PARTIQoL) investigating the effectiveness and impact on quality of life of proton vs photon therapy techniques for prostate cancer appear to be indicating statistically equivalent outcomes, the fact that proton has out-performed photon for other solid cancer tumors (with minimal collateral tissue damage) has left me with questions as to whether there are other factors - unaccounted for in the clinical studies - that are at play. The Laws of Physics are the same; the Bragg-Peak characteristics of proton are the same; theoretically, the outcomes should prefer proton.

My experience with proton quality-of-life side-effects —> I only had 1 day of adverse side-effects during my 28 sessions of proton radiation treatments (during April-May 2021). On the 3rd day of treatment, I had urinary issues. My RO told me that with some men there’s an inflammatory response to the radiation, and if that inflammation is near the urethra can cause the issues that I was experiencing. He recommended that I take 2 Tamsulosin/day for the remainder of the treatments. I took 2 that night and 2 the next morning, and then 2 daily from then on; everything cleared up by that next afternoon; I haven’t had any issues since. My “recovery” from proton radiation treatments has been quite uneventful.

I don’t use the word “cure.” With prostate cancer having about a 33% rate of recurrence, I can only say that I have “no evidence of disease.” (Ask me again after my 6-month PSA test on December 15th.). My PSA right before treatment was 7.976; PSA dropped as low as < 0.008 during treatment; my nadir was 0.198; my PSA now ranges between 0.350-0.550, my most recent PSA being 0.473 (which is “normal” for still having a prostate following radiation treatments).

The only thing I would add, is to hopefully get the Decipher Test done on your core samples. This is a test that looks for molecular level signs of the degree of cancer you may have...the aggressiveness and likely outcome the longer you wait. I was not given that opportunity. After my radical prostatectomy, I began to read about the Decipher test here in this public forum. I asked my doctor what my results were since they were not posted to his group practice's patient portal? He said that the test wasn't done because my insurance declined to pay for it. This was strange because they pay for EVERYTHING, and knowing that without the data and earlier appropriate intervention, it could actually save them some money, I was surprised. So, I asked my doctor why he didn't tell me that the test was declined by insurance, and to tell me how much the test is "cash" out of pocket. I was upset that I was not given the opportunity to pay cash for it. Now, three months post-op, he said the Decipher test would be worthless because we know my final category or classification of cancer based on the surgical pathology report that a lot of microscopic detail and date reported. That said...
I wish I was you. You have a nice low score and PSA is fine. Active surveillance is fine for as long as your PSA remains below 4 ng/ml (upper end of normal reference range). You'll have decisions to make in the future if/when your PSA starts to elevate. It will start with another biopsy (12 core samples), with any new gradation of the type cancer cells the pathologist sees to create a new Gleason score.
I was less lucky - four years ago my family practice physician closed his practice without tell me and the rest of his patients. I was focused on my diabetes care, and went without finding a new Internist to get a PSA for four years. I had a 6.1 PSA, and with a 12-core biopsy, was rated Gleason 3+4 = 7 with only 10% of cells being "4". So, I had the surgery, and the pathology report was more ominous with Extraprostatisc Extension (EPE), surgical margins, cribriform glands present, and lower level invasion into my left seminal vesicle. So, I am now a pT3b category with a nearly-certain likelihood of the cancer recurring in the first 5 years. My PSA from this week (3-months post-op) was great at < 0.1 ng/ml (basically "zero"). I will have PSA testing every three months for the first year, then every six months in subsequent years as long as the PSA remains at < 0.1 ng/ml. The moment it starts to elevate, I will start the 40-days straight of daily radiation. This changes your life...it will be on my mind every single day, and to a greater degree every three months (to start) wondering what my "next" PSA level will be, all while knowing my pT3b category is a near certainty for cancer recurrence. But at the same time, my doctor has repeated that I will be alive..."be here"...well beyond the next 14 years when my son turns 40 years old. That is my goal...to see my son turn 40, daughter turn 45, and granddaughter graduate high school and start (finish?) college. "Fingers crossed."

Your fear of salvage radiation “ Changing your life” Is really way more emphasis than is actually needed. 3 1/2 years after surgery, I had salvage radiation, It didn’t change anything in my life, other than allowing me to live longer. Only lasted 2 1/2 years Before it came back again, but I was undetectable for those 2 1/2 years. Since then, I’ve been on Lupron and Zytiga for 2.5 years and Orgovyx and Nubeqa For the last two years.

I had seven weeks of salvage radiation, I went to work every day right after it never stopped me from doing anything. Only drawback is, I’ve started having a little bit of incontinence after five years.

I even have BRCA2 but I’m still around after 15 years.

Hi

I got my Decipher score back the other day and is .17. I also did the ArteraAI and that came back .08. Has anyone gotten scores that proved to not perform as expected?

It’s probably too soon to know. Both of those tests are recent developments and prostate cancer is a slow growing monster. We’ll know a lot more in 5 to 10 years.

Over the short term they do seem reliable.