Advice, support, anything you would like to add

Sorry to hear about this , you will get great advice from this forum because these guys have lived through there situations and can guide you

for some great treatment options. Seek out a surgeon who has done alot of these surgerys and ask for his satistics on ed and incontence

if that is the route you go. Dont be afraid to ask questions on all treatments and good luck to you and family.

Mike,

Sorry to say but by the info you share above, I think that your GP was out of touch in 2011 for considering a PSA of 3.9 normal in a 42 years old, and I wonder if the actual urologist is better. No doubts that when a patient trusts his doctor, anything he says is acceptable and one feels peace of mind for seeing things advance in the good direction (?), but that is true if we have the means to evaluate his suggestions. Unfortunately, this is not the case if the patient is not a doctor too. Your story lacks information and has flaws, and misses important aspects crucial in a case of prostate cancer. I hope the newbies reading your thread (just like you did before) do not approach the problem simply by listen and accepting what is suggested to them, without checking on the consequences.

I do understand that the word “cancer” frightens everybody and all we want at the time is to get rid out of it but when the bandit refers to prostate cancer, one need to cold down, think carefully and advance one step at a time. I recommend all to read the exchanged posts in this link;

https://csn.cancer.org/node/313538

Your request for suggestions on after surgery care is welcomed. I hope the many here provides you their experiences. Mine is from a radical open prostatectomy I did in 2000. Did not chose the nerve-spare technique approach because my case was diagnosed as G6 with a voluminous cancer (all needles positive) but high PSA (22.4 ng/ml). ED was, therefore, obvious so I had a sexologist-urologist in the team of doctors to teach me the details. He recommended the use of daily pump, viagra and masturbation to provoke erections. One would risk permanent ED if blood is not supplied to the cavernous area of the penis from the very start. Erections became easier (without artifacts) three months later but it never returned to the original status. The real truth is that nobody returns to erections as one knew them to be. Not even the guys that do nerve-spare surgery ever get the same performance. Our wives need to know and understand that things will become different. Worse cases mean no erections at all and some guys get divorced.
Another effect from RP is losing the ability of naturally fathering a child. I recommend you to bank sperm now at your young age even if you think that you do not want more kids. One never knows what the future brings us.

In terms of incontinence, doctors suggest us to be active with kegels to exercise the muscles leading to the sphincter, and starting the exercise before surgery. In my case I was totally dry since withdrawal of the catheter. This is common in open surgeries but less common in robotics. Maybe the longer period of stay in the hospital for recovery makes the difference. I think that in terms of surgery risks, open provides better assurances of faster normalization because one get the benefits from extra care by experienced nurses and available specialty doctors.
Some guys from robot surgery have reported on abdominal hernias occurrences leading to longer recovery periods. Forcing physical exercises (like kegels) should not be done.

Two weeks after surgery the PSA should be in remission with a value of less than 0.06 ng/ml. That would represent surgery success. However, the most important is to have stable PSA results along the initial six months.

At your 42 years old (2011) your PSA was already suspicious and suggestive of existing cancer, and if we interpreted your comment on your family history as cancer then I think that the GP was crap. He should send you immediately to further investigations. Your urologist seem to be following the typical steps citied in the Urological guidelines which recommend a CT and bone scan, when the PSA is above 10, however he also knows that these exams often provide false negative results when the tumor is tiny in size, even in the presence of a high PSA. Educated urologists nowadays request better image exams proper to identify PCa cases with the status of yours (voluminous case, high PSA). In other words, he is just recommending his trade, surgery. Radiation would be another approach and it would be a better choice if your T1c had been in fact diagnosed as a T3.
I also consider his opinions as crap information. The treatment of choice (surgery or radiation) wouldn’t change a bit if you were ten years older or younger. Treatments for prostate cancer depend on the real status of the patient and the location of the cancer. Surgery can assure cure only in contained cases. Radiation is preferable if the case is localized but not confirmed as contained. The comment that “… If the cancer did return after radiation treatment, there were no options except immunotherapy… “is miss leading and erroneous. After radiation you can do surgery but not all doctors have the required experience. However, in most cases of recurrence after RT the cancer doesn’t reside in the gland anymore. What’s the purpose for removing the gland?

I hope you have a contained case and that you manage to knock down the bandit for good.

Best wishes and luck in your journey.

VGama

MikeB1960 said "If the cancer did return after radiation treatment, there were no options except immunotherapy for containment. Basically chemical castration. ".

That is not true.  The treatments for failed primary radiation are cryotherapy, HIFU, FLA, SBRT, and HDRBT.  You should have consulted with a radiologist, and not taken the advice of urologists. You should cancel your surgery and get more informed.

RobLee said:

Primary radiation and post-RT salvage

Mike - I have so much wanted to jump in here and tell my story, as it is in many ways similar to yours. And not doing so it is just eating away at me. But you are a young man, and I wouldn't want to discourage you. And then I'm reading these other guys advising you what to do, and not to worry because there are other options. But please please please do this: before taking advice to have radiation, ask the guy recommending it, or any salvage procedure following radiation, if HE HIMSELF HAS HAD THESE PROCEDURES.

There ARE side effects to these and all forms of intervention... serious side effects, and not all are immediately apparent. Some may not show up until years later. Some may get better with time and some only get worse with age. I live in a seniors community and speak with many men who have had all forms of treatment. This is first hand knowledge, not what was read on the internet (heck, many of them do not even USE the internet).

One thing I have learned is that it's always easy to solve other people's problems when it's not YOU that has the problem. Things are a bit different when YOU are the one who has to live with it. Good luck to you in whatever you may choose to do.

MikeB,

I agree with most of what the guys above have written. And let me add that it seems you are off to a good start in studying the issues and making a treatment choice.  Your particulars with non-aggressive disease are quite common.  What differes some is your age, very young for positive diagnosis in the 40s.  You also express a spiritual aspect to this battle, and mention supportive wife and family...these are priceless. You are viewing the 'big picture,' looking at the situation holistically.

IF you go with DaVinci, as Vasco mentioned, start kegel exercises BEFORE surgery, and then resume after surgery.  A man has 2 urinary spincters before surgery, and one afterward.  It has to be muscled up.  But I had good continence with in two weeks following cath removal.  But each case is different...much longer recovery times are reported.

Again, IF you do surgery, ensure to question the surgeon specifically about his success rate with erectile nerve sparing, alhotugh all surgeons today claim to attempt this.  And verify that he will remove the seminal vesicles.  This is universal also today, but a writer a few months ago stated his doc did not, for reasons unknown. It would have had to be an odd complication, since there is no reason at all to leave in the vesicles once the gland is gone.

Go slow and do what your gut ultimately drives you toward.  There are competing options, and the answer for a guy your age is not simple or obvious for most men, it was not for me.

max