3+3 - others' experiences and questions I should ask doc?

I was 3+3 with 1.2 PSA. I would need to lookup the size. Similar issue with my Dad. He had radiation done but his cancer was more advanced. He died from it but was 87. But he fought it pretty hard the last 4 years. My Dr advised to monitor it. I thought what for. Just to get worse. I requested they remove mine. LARP nerve sparring. 4 1/2 yrs ago. Pet scan is clean my PSA is basically zero. I am partially incontinent and ED. Appears I got the cancer at a cost. I am 72. Some have said I was a lot over reactive. Newer techniques dont require that drastic of a response. I have a friend that has monitored his the last 10 yrs. I dont have any regrets. I might have selected a better surgeon. I did not use Mayo.

Thanks for sharing. Do you know what your dad's original Gleason score was? My dad's diagnosis was in 1990 and he has dementia now and I can't get those numbers. I know they acted differently back then doing radical treatments for most any level over 6. But I would like to know what his numbers were like at age 58. His RP surgery recovery was rough but it seemed to do the trick because the cancer did not return.

For you, what prompted you to decide on removal? Did they give you that option?

My Mother said my Dads started in his early sixties. She doesnt know anything else about it. say he was 62 that was in 1993. He opted for radiation treatment to prevent losing his manhood. It was good for about 10 yrs. Then cancer came back. I think he had removal, radiation, chemo just about everything over the next 15 yrs. Died at 87. Just seemed he spent a lifetime fighting it. I had clear margins with 1 out 12 with cancer. Just thought at 68 and a family history I wanted the best shot at getting rid of it without having to go through much else in the way of treatments. My urologist advised me to monitor it. I selected removal and he agreed. He gave me 85% chance of no incontinence and no ED problems. I ended up with both. I am not sure if I am done with it. 4 1/2 yrs now. No cancer in the margins. Clean PET scan. Hopefully.

I was 3+3 but after surgery was 3+4 also 93% on decipher test not good % at all. Am 1 year and 1 week after surgery and presently cancer free. I am happy. May you find the right answer for you and be happy with your decision.

Thanks for sharing. So the original biopsy was not accurate. What led you to decide on surgery with a 3+3 diagnosis?

For me if I know cancer is in me I want it out. I am a worrier. The decipher test just confirmed my decision for surgery. The biopsy probably just miss the bad spot. After surgery they dissect the prostate for very accurate diagnosis.

With a 6(3+3) and PSA of 4.2, I was on active surveillance for 9 years, until I chose to have active treatment (proton radiation) in 2021.

Unless you have other significant risk factors you haven’t mentioned, there is no benefit nor medically-necessary reason to “just get it out.” Both surgery and radiation have statistically equivalent rates of success. It basically only comes down to side-effects you’re willing to deal with.

Higher scores down the road may not happen. If they do, you simply treat them (just like you would do for any other disease, illness, or injury).

With your dad having had PCa, have you had a genetic (germline) test to see if you inherited any gene mutations related to prostate cancer? If not, then his diagnosis might not be a factor.

Other numbers you should be tracking:
> % Free PSA
> PSA Doubling Time
> PSA Velocity
> PSA Density
> Biomarker (genomic) tests
> If insurance will pay for 2nd opinions on the MRI and/or biopsy, as well as pay for Bone, CT, and/or PSMA PET scans, I would do those as well.

Those additional numbers will provide you sufficient datapoints to build solid confidence in an AS decision (or enough data to decide not to).

AS isn’t a permanent decision. Once you’ve had the time to fully understand your prostate cancer status, and should any number(s) change to where you feel uncomfortable with AS, you can always decide on active treatment. (That’s what I did.)

Don’t let fear determine your decisions; follow the numbers.

Appreciate the details. What finally caused you to decide treatment after 9 years of AS?

I can’t believe you can stay on active surveillance that long. You are lucky. Most people I know have been on active surveillance for 1-3 years then had surgery. I have been on active surveillance for 13 months. PSA now 12.5 having RPR on August 8th. Kinda of feel like my life as I know it will be over. Not looking forward to it. Surgeon has done over 300 surgeries. I have been doing kegel excersizes fo months. Trying to stay positive

I am not going to try to justify my decision whether good or bad. It was the only one I could make in my mind. I was 68 and healthy. No issues with erections. I too was worried. I talked to my wife of 50 yrs and she said no big deal. we can work it out. I didn't lose any desire. My testosterone has remained stable. My wife got cancer while I was recovering. 4 years now with no sexual stimulation. So I don't even know if I can make it work. I also had issues with wearing pads. I hated the thought of a wet one. Very inconvenient. I can sleep at night without one. I have to get up about 4 times. I decided to wear a condom catheter with a 160oz leg bag. I wear it every day while awake. No one knows and I can go to the gym , work, do anything. I dislike the inconvenience the leg bag offers. Dr hates it . It doesn't make you practice holding. Looking into an AUS. But my point is yes it changed my life. But I am 72 cancer free with no treatments. My body is strong. My mind is healthy. I feel more positive than negative.