First of all: I must say it was this very web site that provided me the black and white information I needed to make a decision on treatment. I am still amazed the doctors/hospitals refuse to tabulate statistics in this fashion. Major kudos to YANA.
At 50y.o. annual check up no digital exam was done, blood test revealed a PSA of 3.8. The PCP informed me I was under the legal limit of 4.0 and no action was needed. But obviously, at 50, I was concerned that I was right up against it.
At 51y.o. no PSA or digital exam was done at the annual check up. I didn't even think about it. Apparently, neither did the PCP.
At 52y.o. the annual check up (SEP2016) was done by the Phyician's Assistant instead of the PCP. She did a digital exam, and I could tell she had no idea what she was doing. We agreed to do a PSA. Result was 4.5
I pursued follow up with 2 different urologists independently - one at MassGeneral and the other at DanaFarber/Brigham&Womens.
PSA was done by urologist in OCT 2016 and revealed 4.0 somehow lower than the test from a month before.
Also, a Pca3 Assay urine test was done which revealed that if I were to have a biopsy, it would likely result in positive for cancer. This is a good test to have, especially with a PSA on the lower end like mine was, in that it helps identify the likelihood of a positive biopsy. Some urologits/oncologists might consider a watch and wait approach, even delaying a biopsy due to its inherant risk, w/o this information.
Many other patients I talked to had never heard of a Pca3 Assay test. Ask your doctor about it if he/she doesn't bring it up.
Armed with a PSA & Pca3 indicating a likelihood of cancer, I chose to get a biopsy to better assess the extent and grade in DEC 2016. Results: 8 of the 12 cores were positive for cancer, some of them up to 40% in the core and Gleason of 6. I had the same cores analyzed by a different lab, the results were very similar, except that in this report it indicated perineural invasion in one of the cores.
Neither of the two urologits surgeons were able to feel any lumps on the prostate. And I will tell you, their version of a digital exam was noticably different from that of the Physicians Assistant back in SEP.
In FEB 2017 an MRI was inconclusive. No masses, no sign of anything outside the prostate.
This is where the real psychological torture begins. There is not sufficient diagnostics to easily know whether or not the cancer has escaped the prostate and attached to surrounding tissues, etc.. This means you don't really know what you're in for until they do surgery and can actually see the tissues, take samples and biopsy them.
Both MassGeneral and DFBW recomended it be treated.
MassGeneral scheduled a multidisciplinary appointment - Surgeon, Radiation Oncologist, Hormone
DanaFarber/BWI consult was just the surgeon.
Both of the institutions recommended Surgery in my case. Even the Radiation and Hormone doctors suggested this was the preferred approach in my specific case.
*** This was due to the thought that radiation, even though the initial side affects are minimal, would likely have greater negative side affects down the road, and at 52 years old, I had a lot more life to go. Both surgeons made verbal representations to me that at my age, I had a very good chance of a "full" recovery from surgery. I had serious doubts about this because I had talked to at least 12 men who had radical prostatectomies and almost all of whom did not have good results at all. However, all of them were older than md. I needed black and white info from a larger pool of subjects.
Neither of the surgeons were able to hand me a database like YANA has. Where is the management? It was not easy to find a 52 yo guy w/ prostate cancer to talk with - even around the Boston area. YANA's site provided me the source. When I sorted the YANA database to those who were within two years of my age at diagnosis and whose numbers were identical to mine, a group of about 20 patients, almost all of them reported a full recovery. I felt better about proceeding.
I decided that Robotic Laparascopic was probably my best bet to eliminate the cancer and still have a potential for proper erectile and urinary function long haul. Communication and flow of information seemed to be more comforting at DanaFarber/BW - so I decided to pursue treatment there, and never went back to MassGeneral. MGH was good, but I needed as much communication and info as possible to feel good about trusting the entire team.
Surgery was MAR 2017. In a pre-op meeting w/ surgeon I instructed him to spare the nerves at all cost, unless for some reason they are just riddled w/ cancer. Remember, it's your body, you control things. When I woke up from surgery the first thing I did was clench my muscles down there; I knew immediately somehow that everything was going to be OK.
The interns present during the surgery visited me that night and reported that all went as well as it could, there was no sign of cancer outside the prostate and that nerves were easily spared.
The next 10-12 days I was stuck at home with a catheter.
At the 2 week post-op it was reported that the cancer was contained w/in the prostate (IE: negative margin) and that none of the other tissues taken at the surgery contained any cancer.
*** However, it was also reported that the cancer had come to within 1 mm of the cell wall. I wonder what might have been the case had I not had a PSA test when I did, and had let this go yet another year. My point is simple, the digital exam is useless since if it finds a bump, then it's probably too late. The PSA, even though not always accurate, is more telling, especially coupled with the Pca3 Assay I referred to above. And you can do PSA 2 or 3 times if you suspect inaccuracy. If you have a PSA in the 3's go to a urologist/oncologist and get fully educated, do not rely on the PCP, this matter is outside their abilities.
Within hours after the catheter was removed, I was able to achieve a partial erection. Urinary control was improving by the hour.
At the one month post-op check up, my PSA was 0. I was still wearing a pad, but had regained the vast majority of urinary control. Erectile function had improved but only marginally, probably since function was somewhat there right off the bat. Nonetheless, I wish it were better.
Two months post-op I am in control of urinary function. No pads needed. But I must be aware of sudden movements/exertions like a twist, squat, sneeze or cough. Erectile function still improving, but not steadily or fast enough - as far as I'm concerned.
Five months post-op urinary control is significantly recovered but not 100%. There is no real threat of a mis-hap, but I have to be conscious if I am tired at the end of a day and have had a couple beers. Erectile function is certainly better and I am capable of performing, even w/o Cialis, but not quite at full firmness. Achieving an erection does sometimes require some concentration/effort, and sometimes it just doesn't get quite there. Nonetheless, given what I've seen so far, I am hopefull I will achieve a full recovery on this front within the coming year.
*** Lastly, neither of the surgeons I had initially consulted seemed to clearly and thoroughly explain what all the definite (vs. possible) side affects of treatment were. Maybe I'm a stickler for specifics, but it wasn't until after I had the radical prostatectomy that certain specifics, such as inability to ejaculate and thus inability to father a child, were revealed to me. This is pathetic, frankly. I do not fault the urologist surgeon, he's got a rather difficult and specific job to do and shouldn't be sidetracked with anything else at all. I fault the managment of the hospital for not developing and implementing the proper protocols.