Recently Diagnosed, Intermediate Prostate Cancer

SCJ428, glad to see you are reaching out for advice and doing your research. I did the same when I was diagnosed last year. I was 56 when diagnosed with Prostate cancer (Gleason 7 --> 4/3) in September 2022 and had a radical prostatectomy in November 2022 at Mayo-Rochester. I did a lot of online research, talked with doctors, and discussed with people who had went through prostate cancer treatment previously. As others have stated, it is a personal decision and has to align with your life expectations. For myself, I decided on a radical prostatectomy. Given my age and hope for 30+ more years of cancer free life, I saw surgery as the only logical option for me. A radical prostatectomy is the only treatment that allows for all of the known cancer to be removed from your body and a complete pathology to be performed. Others options use imperfect sampling techniques (biopsies) and imaging tools to guide the treatment. For myself, I was unwilling to take the chance of missing existing cancer cells. As always, cancer is tricky and even if you remove the prostate, seminal vesicles, and several lymph nodes, metastasis could have still occurred. However, I saw a RP as the best possible chance for long term survival.

For me, surgery went well - Negative margins, lymph nodes clear, continence/erectile function regained. The biggest inconvenience of the surgical procedure related to referred shoulder pain from the inserted gas and catheter. It took about one week for the shoulder pain to go away and catheter was thankfully removed after one week.

Good luck with your decision and don't let anyone tell you there is only one treatment plan - Do you research, pick a center of excellence, and go with the best doctor at the center of excellence (preferably has done thousands of whatever procedure your decide on).

Jim

Thank you for your response. I started looking at the radiation treatments, Photon, Proton Beam, those types. Just not looking forward to the surgery. However I have come to realize there is a more associated with radiation treatment than merely radiation. Hormone treatments in some cases, potential side effects that don't show up for months or years. I'm still waiting on my scans. Then will make a decision. A lot of you guys are going with the surgery. I may as well. It's a tough call. Thanks !

Jim is spot on. I had mine revoved 4 months ago. Gleason 7, CT Scan, Bone Scan, no spread, surgery, all lymphs, on the margin, no cancer spread. First Bloodwork had a PSA of .0022. a fraction over undectible. My boy is waking up, but still wants to pee to much. 1 in 6 men get this we know of. Mine was called aggressive. I am working out hard 2 or more hours a day and doing the Kelgel excercises 3 times a day, doing 1,000 crunches a day, and doing these lay down on your back, hunch as far up as you can and hold it 30 seconds and do 3 of them. I am now at about 85% normal in the water dept. Good luck. I am 70 now.

I had the surgery in Aug of 22. Never had been in surgery before. Gleason 4 + 3 before and after surgery. No pain after surgery other than some slight shoulder pain. No big deal at all. I was 60 at time of surgery. No BCR to date and hopefully will stay that way. Praying for the best. My advice is to get an experienced surgeon with RALP. My surgeon performs 3 a week and has performed over a 1000 in total. Good luck with all. I know it's overwhelming at times but try to stay the course and make the best decision you can based on your case specifics. But I was never in any discomfort after the surgery if that helps.

The surgery really is not as bad as some make it out to be. Post surgery, minimal surgical pain. The worst part related to referred shoulder pain and that darn catheter. After a week, both were gone. I delayed a knee surgery in order to have my RP as soon as possibly. Had this surgery 6 weeks post RP. FYI - A key for my recovery was getting a lot of sleep. I slept 11-12 hours every night. It takes a while for the ED to wear off and for me, about a month for continence (this will depend on age and condition you are in).

Nobody can say if the surgery will go well, but with a center of excellence and a great surgeon, odds are greatly in your favor.

Good luck with your decision,

Jim

Like I tell people on this site there is a big difference in decision making when you are 56 like you and 73 like me. Age and future life expectancy is a huge determinant in choices.

scj428, I thought I had posted a reply but do not see it. First know you are not alone. 1 in 6 men will be diagnosed with prostrate cancer and almost all will have it but not discovered until after death FROM SOMETHING else.

The biggest concern I had was what was my level or risk of metassing, and was the cancer only in prostrate. So to know that you need to have a PSMA, bone scan, Decipher test. If you have not discussed those with your urologist or oncologist/radiologist you should. It will help you decide on your treatsments and also give you doctor more information to decide on what treatments recommended.

I would also get a second opinion. I know this is a nuisance but if you hear the same thing from two different providers it will help. I was originally given a 3+4=7 Decipher Score. I had several biopsies at 3+3=6 but you will see they don't get to worried about a Decipher score of 6. So my initial level was put at intermediate risk from the biopsies. But I was told about Decipher (which uses the biopsies already taken) test and had it and it came back low risk. So the initial recommendation of hormone treatment and radiation was changed to radiation only.

Now that still had me researching as a big difference in radiation treatments are out there. The biggest is photon and proton. Photon enters body and exits body. Proton enters body but a very low level and then releases it's radiation at the programmed site (prostrate in my case) AND DOES NOT EXIT body. So you do not get the radiation damage of photon which does pass through body and tissues beyond prostrate.

Research shows that both have equal outcomes but the chance to reduce radiation damage by having proton. I chose proton over photon which meant doing to UFHPTI verus Mayo Jacksonville (only had photon) for my treatments. I had 30 rounds of proton radiation over 6 weeks and NO hormone treatments.

How did I do. About 3 weeks in a little less energy and stamia. Started to have reduced urine flow and velocity. Finished treatments in July 2023. About a month after urine flow, leaking, velocity started improving and about 2 months later back to normal. My first PSA test at 3 month was 1.2 down from 3.75 (I am proof that you can have prostrate cancer and still a normal PSA level). At 6 months my PSA went down from 1.2 to .79.

My oncologist/radiologist said the goal for me was below 1 and to keep it here with a concern if it started rising again on consistent basis. I would not have had surgery. The radiation treatments that have come in last couple of years are far more effective that 5-10 years ago.

But as all will tell you everyone is diferent and what we chose or what is best for us may not be for you. Thus you have to make your own decisions based on your doctors, research, and the tests results you get. We can give you our stories and what we did and outcomes but do your research, asked questions, get second opinions, and asked for every test that can help diagnose your cancer to give you and your doctors the most information before deciding on what is BEST FOR YOU.
Good luck

SCJ , what was your PSA going into the biopsy ? Based on what I know you have some 3+4 in there ... so they can be a little tricky . A biopsy itself is a 'stab in the dark' so to speak as well . Was it MRI guided or Ultra sound guided biopsy , or ? At this point, and what I know, I would go for surgery- pedal to the metal approach. You dont want that 3+4 hanging around. PLUS , after having the prostate removed a proper biopsy can be done and analyzed . that cannot be achieved with radiation. Also, while they are in there they can to multiple biopsy's ( Lymphs, Bladder , tissues , etc ...) . this will give you a great idea of where you stand going forward for other treatments if required . Hang in there ! Lots of support here . Join a local Prostate support group. I don know your area, but there are plenty in USA and my country of Canada ( BC )

Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.

It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.

Reads like MRI and Pet Scan may be in order