Prostate Cancer- getting help-questions answered

I WENT TO CANCER SPECIALIST AND HE CRIED AFTER HEARING WHAT MY LARGE UNIVERSITY BASED DOCTORS HAD DONE/NOT DONE----MAY 12 FUSION BIOPSY ALL 9 GLEASON SCORES...ON LEFT SIDE NOW SEPTEMBER AND- STILL WAITING.....FOR SOMETHING TO HAPPEN....BULGE ON LEFT SIDE, TOO BIG FOR SURGERY "TOO LATE FOR SURGERY" "FOR YOU TOO MANY EXPECTED NEGATIVE SIDE EFFFECTS FROM BRACHYTHERAPY" SO ...WIDE BEAM ONLY EVEN THOUGH THEY NOW HAVE PROTON BEAM (NO PROTON BEAM FOR YOU HERE BECAUSE INS SAYS IT COSTS TOO MUCH AND THE LONG TERM DATA IS THE SAME FOR MEN WITH WIDE BEAM AND PRONTON" "NO MORE PSA TESTS FOR YOU" AND NO SPACE OAR GEL PAD....NOT FOR MEN ON BLOOD THINNERS" I AM ON CARVEDILOL -----I FEEL LIKE I AM GOING TO BE WIDE BEAM RADIATED AND MY COLON WILL GO CNCEROUS IN 5-7 YEARS OR MY BLADDER----THEY WILL DO 44 DAYS---IT IS A OLD VARIAN HALCYON MACHINE NOT LIKE NEW Varian TrueBeam Linear Accelerator, 67 MILES AWAY....AND I CAN WALK 3 MINUTES TO THE OLD ONE----I FEEL LIKE I AM BEING BLOCKED FROM NEW AND SAFER TECHNOLOGY AND JUST EING INSERTED INTO A LINE OF MEAT SAUSAGES FOR RADIATION AND THAT NO MEN EVER GET ALL THE CANCER KILLED OFF AND I WILL DIE SOONER BECAUSE OF IT....GOOD LUCK TO YOU

Forget about sex Its the testosterone feeding P cancer

Get to oncology Maybe get on Zolodex

Just saw this " Relugolix Approval Expected to Alter Treatment for Advanced Prostate Cancer Best to reduce testosterone which as you know is the fertilizer for prostate cancer

I'll just drop a couple comments here with the caveat that I'm not a dr or an expert, just having gone through the operation myself.

My understanding of the T relationship, put in simple terms is, Testosterone is essentially prostate cancer "food", this is why when you're on radiation they give you therapy to reduce the production of testosterone. I've often hear of folks getting testosterone injections but I just don't understand the science/idea behind it other than trying to boost quality of life for the patient.

At your stage of the game, again as a layman again, the continual bleeding would concern me a great deal. It shouldn't be from the urethra repair at 10 weeks if that's not healed it should be checked. However, if it's not that, they'd have to start looking at bladder issues or perhaps kidney stones. Having said that, by intentionally dehydrating to avoid the incontinence issues you could be creating an environment where stones might flourish.

You said you haven't had a follow up yet, but, have you told the doc what is happening? With this symptom in mind, I'd be knocking hard on the urologists door at this point for some answers/diagnoses. Maybe even a second opinion. Other things like sex drive and erectile issues would be secondary for me at this point, and, I would think it's fairly early in that part of the journey for you.
Good Luck to you!

My husband’s oncologist prescribed Abirateron (Zytiga) treatment assuring us there was no risk of seizure side effects. Three to four weeks into treatment, husband had a gran mail seizure and was transported to ER. Thankful he was home and not driving, etc. Three of his doctors (oncologist, pcp, and now neurologist) still say this is not a side effect. They don’t like it when we do our own research, My husband has been seizure free for over forty years. He will be having an MRI and EEG just to be sure something else isn’t going on, but it seems the Abiraterone was the culprit. Any thoughts? Thank you.

Get on Zolodex
Best to reduce testosterone which as you know is the fertilizer for prostate cancer

Get to medical oncology fast
Lots of choices Enzalutimide Doralutimide etc as needed

My husband’s oncologist prescribed Abirateron (Zytiga) treatment assuring us there was no risk of seizure side effects. Three to four weeks into treatment, husband had a gran mail seizure and was transported to ER. Thankful he was home and not driving, etc. Three of his doctors (oncologist, pcp, and now neurologist) still say this is not a side effect. They don’t like it when we do our own research, My husband has been seizure free for over forty years. He will be having an MRI and EEG just to be sure something else isn’t going on, but it seems the Abiraterone was the culprit. Any thoughts? Thank you.

I (age 69) had my radical prostatectomy in March 2022 and the incontinence is still with me 6+ months later but is much, much improved. I stopped using pads after 3-4 months and now only have occasional drips and dribbles, usually in the evening. No longer any problems during the night. I would recommend pelvic-floor therapy as it helped me. As for sex drive and ED, my urologist started me on a daily low dose of Viagra (with stimulation) after my catheter was removed. Not much happened for the first 3 months or so but I was able to have an erection-less orgasm occasionally. Progress improved slowly but surely after 3 months and I am happy to report that intercourse was achieved recently (6 months post-surgery) so maybe you will have similar good fortune.

I don't know enough about these medications to comment. I do know that when my PSA score went from 4 to 11 my urologist did a biopsy in the local hospital and seemed hell-bent on doing robotic surgery.
I was scared and really had trouble thinking things thru. I ÓK'd the surgery and my prostate was taken out. For 2 weeks I had a lot of blood in my urine. I also (in the 2 weeks) had what appears to be my only "follow-up" with the urologist.
A year earlier my blood test showed that I had "low T". So I had monthly testosterone shots. But the shots seemed to have no effect. Then the urologist sent me for a blood test and my PSA had risen to 11. A final blood test (after 1 month of skipping the "T boosters) showed my PSA levels dropping but the biopsy showed my prostate was ridden with cancer.
Now some-one in a stronger position, either by way of money or something else, would probably ask the doctor if the T-shots caused the cancer. But when you are 70 years old and have been out of work for ten years because both your knees have to be "totally replaced" you become more careful what you say to some-one like my urologist. I was afraid that if I voiced my suspicions he would almost reflexively think that I was thinking "lawsuit".

So I kept quiet.

I was not given any medication for prostate cancer recovery and I stopped taking my usual daily dose of Tamsulosin. I figured that I was having enough trouble with bladder issues. I mean, I would be sitting more or less naked in front of my PC, and suddenly I would feel a warm wetness on my feet. I'd look at my penis and saw that once again I had decorated my bedroom floor with splashes of red and yellow. The blood tapered off to nothing after about 3 weeks, but I am still having issues with incontinence. My "robotic enhanced surgery" was done on June 16th. I still need to keep empty jars around my bed because I wake up having to pee but often, I know that I will not be able to stand upright before I start to piss on anything around me. Hence the 4 empty jars. Even without taking the Tamsulosin (aka Flomax) the only real control is to simply drink less liquids, especially an hour or so before going to bed.

Oh, since I have bored you all with TMI, I will also say that I have no sex drive post operation. I have tried to masturbate but even though some people claim you don't need an erection to reach orgasm, it has not worked so far for me. Maybe a few months down the road....

I appreciate having this bulletin board to read other men's experiences, and to share my own.
Thank you all.