Intro

[Buddy1950]

My husband, 68 years old, was diagnosed last April and had surgery in June. He was told to wait as his psa was 6.3 up from 4.5 a year before. He had a biopsy anyway and had a gleason score of 8. Urologist wanted radiation. He opted out of that and went to Mayo, had a prostatectomy and bladder reconstruction (from a benign tumor) .They said with radiation, that would have been too difficult, likely. (lucky he didn't do that) All looked good clear margines, vesicles, lymph nodes, scans ... but in Sept psa was .44 and in Dec 6.5 . (clear Choline and Mri scans in Sept) They ordered Lupron and 7 weeks of radiology in a few weeks. He requested an appt with Dr. Kwon and now will see him shortly and was put into a clinical trial comparing psma to choline scans. He will not be getting Lupron or radiation now, it appears. (can't be in the study with them) I've read with interest, all the good stories and sad stories and it gets overwhelming as to know what to do.

What seems a little upsetting is the care in some places ... our neighbor is dead from this, another dying ... with what seems like really poor care. My husband had to request PSA tests and they often said it wasn't necessary... and had a terrible time getting the only urologist to send records to Mayo. My husbands has dreams about how unfair it is that some people get good care (like we think he does) and others get a few hormone shots and go home. One with radiation and told he was cured ... and never checked again... after we suggested it, he gets checked and PSA is high. Somehow everyone treats it as if it is a fairly inconsequential illness... and from the stories here, there is a lot more awareness that should be done to save lives. Very upsetting to see younger men that no one ever thinks get this. Mayo told our son, 30, to start PSA at 40 yrs old ... and start a Mediterranean diet.

Sorry so long... Thank you to all of you that post things, I've learned so very much. Still don't know what the best plan ever is, but when the radiologist at Mayo said there was only a 30% chance it would be effective... he opted out of that.

Susan

[Tall_Allen]

Here's a nomogram showing the odds that salvage radiation will be effective:

riskcalc.org/ProstateCancer...

[Buddy1950 in reply to Tall_Allen]

Thanks... looks better than 30% ... but maybe there is more we don't know. Said something about no longer believing it will be in the pelvis. Suppose to wait and hear what everyone says.

[GP24]

I expect the PSMA PET/CT will change the planned radiation therapy completely. Simply put, you usually see much more than you ever wanted to see. If you see where the mets are, you can easily decide if radiation will be effective. That means, if it will be possible to target all of them.

So just wait for seeing Dr. Kwon and the result of the PSMA PET/CT.

[tango65]

I agree with GP24, Ga 68 PSMA PET/CT changes the radiotherapy planning in about 40 to 50% of the patients. This is one of the many articles published about this subject.

ncbi.nlm.nih.gov/pubmed?ter...

[MelaniePaul]

Hi Susan.

Yes of course it is very difficult this path of often not knowing, fear of what is to come, appointments with doctors and consultants whose opinions may differ, and the level of care that is often not as good as we would wish.

I hope that you will get some clarity over the next couple of weeks of where to go next and what to do.

Best wishes

Mel.

[j-o-h-n]

To Buddy's Buddy... All I can offer is that Dr. Kwon has a good reputation with many of the members on this forum.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/14/2019 4:50 PM EST

[Buddy1950 in reply to j-o-h-n]

Thanks At least he is optimistic, everyone so far has been so negative. It feels like a very lucky break having a nurse suggest he at least consider a change to Dr. Kwon. Will be interesting to see which scan picks things up first and where!

[j-o-h-n]

Again, I wish you both,

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/14/2019 9:41 PM EST

[Hidden]

PSA and T testing is cheap. When I was hot and heavy in Dx and treatment, I had monthly PSA and T testing for 27 months. In total since December 8, 2002, I have had 87 PSA and T testing. Prior to this period, I had PSA checked every 6 months since age 40.

I turn 72 in three weeks. My recommendation to my son, is PSA twice a year. I ask him every six months what his results are. The US Preventative Taskforce can go to hell as they have zero credibility with the exclusion of Urologists and PCa specialists. Check the Taskforce makeup when they made their recommendation, over 50% were not practicing nor research medical doctors. I have the impression ..... how can we cut medical expenses in anticipation of a national healthcare scheme....... am I biased, you bet!

GD

[Buddy1950 in reply to Hidden]

Something is very wrong in the system. Yesterday he talked to the tax guy who said he had his psa checked awhile ago and it was elevated, and never went back as he didn't realized it mattered.. fuel oil guy the same, told something he didn't have to worry about. Telling people if they don't have symptoms, don't worry?? Interesting observation, GD.

[timotur]

Adding to the confusion earlier this decade was the U.S. Preventive Services Task Force (USPSTF) issuing guidelines to not use PSA as a screening tool, lest it be misinterpreted, leading GP 's to not perform the test, unless requested. My GP actually discouraged it in 2010.