Newly Diagnosed

Koach, as you read these replies please be aware that there is bias on all sides and from every corner. Yours is still intermediate grade so you do have time to explore multiple options. One month may be too short, but I'd say do not let it extend beyond six months.

And in response to each treatment recommendation, be certain to ask "and if that fails, what will be my options"? Ask the question is several different forms. "How will you measure the success of treatment, and if there is no improvement within XX months, what would we do next? And how would we measure the success of that treatment?" and so on.

My first urologist had the tendency to up and walk out of the room. The second one referred me to two RO's who didn't like my questions either. Beware of dismissive answers such as "in a very small number of cases..." Because when that 1% or 5% of adverse cases turns out to be YOU, it is not a small matter at all. Just because treatment XYZ has worked well for most men on the first attempt, it is no guarantee that you will be just as fortunate.

Some guys here summarily dismiss the concept of having a backup plan. They were among the lucky ones. In other cases treatment may involve multiple courses over a period of years... and still have no guarantee of success. Good luck in your own journey.

F8 said...
... he said "two weeks, not two months".

I got almost that exact same recommendation last summer. The mass that was discovered in early August was originally scheduled for removal in late September. I said I wanted a second opinion not from a surgeon. He agreed but said that I need to act in "weeks not months".

Second opinion was inconclusive, and the mass was excised in late October. Much preparation was required beforehand. It was pretty scary, but in the end everything worked out well. Anymore I consider myself fortunate when a whole lot of stuff doesn't go wrong.

The key recommendations:

1. get your biopsy confirmed by the crew at Johns Hopkins. about 30% of the time, the gleason score will change--about half the time for the better, and about half the time for the worse. Either way, get that done.
2. While you're waiting for the second biopsy opinion, make appointments with the radiation groups near you. Make sure you talk to the different subspecialties--Brachytherapy (both LD and HD), SBRT (if available), External beam.
3. Don't fall for the "if you have radiation first, you can't have surgery afterwards" half-truth. While the statement at it's basis is true--the implication that if radiation fails you have no further options is a long way from true.
4. Take a reasonable amount of time--at G 3+4, you do have weeks to settle into a plan. Not days. Not "gotta do something NOW".
5. Make your decision based on the criteria that are most important to you. Then get it done.

Koach, OK, great. Now the recovery part. I'm curious, did you have Dr. Smith for your surgery? He's one of the very best in the country. I've known several guys who had him for RALP, and all have had great outcomes.

Walk, Walk, And Walk more. Get a scrip for Viagra or Cialis and start taking it--it will actually help with continence as well (blood flow).

3 months post op now and pleased to report my psa(done 10/25) was <.1 “undetectable.” Urinary incontinence has greatly improved. Can get by with 1-3 pads a day depending on activity and fluid intake. I believe within a couple months I’ll be dry. Haven’t looked at this forum in awhile so thought I’d check in.

Congratulations for undetectable. Yes, you likely will dry up well enough. Good luck ahead!