SBRT - 1 year after

[chrisNYC]

TO ALL:

I completed SBRT at NYU in NYC ("cyberknife") last May under the care of RO Dr Jonothan Haas.

Overall, )beyond the testing, 2months of ADT and gold marker implants), not a terrible experience.

Now, a year later, i would like to report:

THE GOOD. my PSA is down to .3 and my T cell count is back to 600. my energy is fine and i am able to live my life to 95% of its normal capacity. Mentally, i dont think about the PC at all and am optimistic that it will not return. Year followup with Haas was reassuring, he set another date for a year. Will monitor PSA in 6 months. Still following up with my Uro.

THE BAD. i did develop a mild case of peyronies disease, with some upward bend of the penis (which has a kink in it). some size loss, though not extreme (who wants to loss any, though?). tried some rehab devices without much success. Has affected me mentally and i approach intimacy with some fear and reservation. i am on 5mg cialis per day, which is helpful. Very capable alone, more concerned with a partner. Single, so that is an issue.

Of more recent concern, my urinations have become far more restrictive in the past month. i am getting up 2-3 times a night and it is sometimes difficult to get a stream going. a little better during the day, but think i may need to consider Flomax. has anyone else experienced this? is flomax a temporary or long term solution?

on the bowel front, more frequency and urgency. only 1 or 2 bad moments in the past year, but still not ideal. some days, i can go 4 to 5 times.

so, as per my mortality, i feel good and confident.... But, many of the private issues are starting to become, in aggregate, a bit alarming. i can live with them, but prefer to work on getting them better not letting them get worse... any suggestions welcome.

overall, very relieved to be past the decision making stage we have all wrung our hands with and, of course, feel blessed to be where i am now.

best wishes, Chris

[Tall_Allen]

The Flomax should be temporary, but get up slowly because that with the Cialis can lower your BP.

Have you tried pumping to restore size?

You may be able to get Xiaflex for Peyronie's.

[chrisNYC in reply to Tall_Allen]

i did the traction system for several months without any visible gain (but not further loss); have a pump which i use occasionally, perhaps i will step it up. certainly inflates the man to his original proportions and a touch more... have heard mixed things about the efficacy

[BeTheSmile]

I feel your pain, and your gratitude as well. Here are a few items from my own experience:

I tried Flomax and also Rapaflow. In the end, I use a saw palmetto supplement with beta sisterol and my specialist thinks it is fine as an alternative. (I use Palmetto Complex II with Lycopene by Allergy Research Group - no other connection to that company or product). I view it as long term, 2 pills per day. While it does not totally solve it (still up multiple times a night), it helps. Specialist says that saw palmetto results in a slightly lower PSA reading, ok as long as they know you are on it.

For Peyronies, see PeyroniesForum.net, a reputable forum from the United Kingdom. Search for "protocols" and also "Old Man". They stand by this particular type of pump and protocol, and it appears to be sincere, with many positive testimonials.

Good luck and good cheer to you.

[chrisNYC in reply to BeTheSmile]

thanks for the advice! want to bring back the beast, ha.

post radiation is an adjustment for sure, but good to be on the other side of it.