A Urologists Personal View Of PCa

[gusgold]

I have read numerous posts by guys who knew Dr. Myers when Myers was receiving treatment for PCa at the same time and by the same Doc they were. Myers is in a durable remission while there other guys are cold stone dead. Why..because Myers had the knowledge to demand and receive twice the normal radiation dose to the prostate and lymph nodes.

Now we have this Uro..because of his knowledge and "friends" in the business he was able to chart out the optimum treatment What about us "mere mortals"...we make an appointment to see some sanctimonious smuck, in a white coat, and put our life in his hands..many times to our own detriment.

It is only by being members of this great group that we can find out the best treatment. But, for most of us this is after the fact. When we first got that rising PSA and then the biopsy of PCa we were scared and just wanted the damn thing out of our bodies and were flying blind. Nobody told me it was usually a slow growing cancer and I had plenty of time to do research and educate myself. No way...I was rushed into a RP and then that worthless SRP. And when I had a BCR after SRP they wanted to rush me into ADT and put me on the path to CRPC. But, I knew enough by then to say Fuck You.

Gus

ncbi.nlm.nih.gov/pmc/articl...

[Hidden]

Yea, it seems super easy to be critical of the careless care that one seems to get. Bungling allover the place. I dont think that they realize how it looks from the patient's end. And the "satisfaction surveys" they send out are hopeless. IMHO.

[Hidden]

He says his Gleason was 4+4 with a little 5. Now, after the 2014 revision, that would be 4+5. Ignoring the presence of any 5 is no longer thought to be the most accurate characterization of the danger of the disease.

He mentions adjuvant radiation, but on rereading the sentences, I gather he did not get that; it was a comment reflecting what the thinking became.

Then in 2012, he was using a T99 scan to look for and find bone mets. This seems so short of ideal.

He did simultaneous enza and abi? I thought there was a conflict there someplace. I forget what...

Survived ugly. Good for him.

Thanks for posting the article. Stuff to ponder.

[bldn10 in reply to Hidden]

I believe that Myers in fact hit his w/ everything available at the time except RP, including protracted ADT.

Yea, tell a rad-onc how much radiation you want, or almost anything that doesn't fit their standard protocol, and you will either relent or be sent packing.

[pjoshea13 in reply to bldn10]

I only met Myers once. He did not look well at all, but he said that he was coming up to 5 years since treatment & was excited by that.

He told me that he had almost every lymph node in his body removed, & that "They wouldn't do that today."

Gus mentions him being an insider when diagnosed, but wasn't he a researcher at UVA back then? Connected, of course, but not treating patients?

-Patrick

[mooseheadlodge]

Thanks Gus, excellent post! I bookmarked that link.

[woodpecker43]

Thanks Gus. I find my case following the same path this guy took. I am waiting for approval to do SBRT to oligo mets. (two, one in lymph node and one in hip bone) Surgery and srt have failed. Hoping for a durable remission.

[Hidden in reply to woodpecker43]

I dont see why they will do salvage radiotherapy on people who have gone metastatic after radiotherapy to the primary, but get all squeemish about doing radiotherapy to people who present as metastatic.

[herb1]

Beautiful article. I'm going to write Dr. S a thank you (and more) note. My conclusion, again: I shuda got an MD instead of the Ph.D. Maybe then these guys wudda listened!

Herb s.

[BigRich in reply to herb1]

Herb, like you I have a Ph.D. and it helps. My doctors will listen. In the past, I had a doctor who is no longer on my medical team; who said I read too much. However, on my next visit he adopted the protocol I previously mentioned.

Rich

[herb1 in reply to BigRich]

maybe I'm just not as nice to my docs as you are I do challenge.

herb

[BigRich in reply to herb1]

Herb, I believe, when neccessary, it is my duty to challenge.

Rich

[herb1 in reply to BigRich]

Rich, what would you counsel me to do: Just reviewed my CTs and bone scans over ~14 yrs. I find that the ordering doc, my oncologist, ordered 5 out of 6 of these when my psa was <<1 while on ADT3? A waste, at the least!

[BigRich in reply to herb1]

Did you have mets before you went on ADT? Where? Size in millimeters or centimeters? Number of mets?

Rich

[herb1 in reply to BigRich]

Rich, yes, "we" believe so. 2+yrs after seeds+XBRT, psa at 9.0, A "suspicious 2.5 mm" right external iliac node observed on CT but was confused by a prostascint (remember?) that showed the node "did not persist" on the fifth day rescan. I understood that that 5th day was critical. Answer your Q?

herb

[BigRich in reply to herb1]

In 14 years you had only 6 scans?

Was your PSA always under 1 0r .1

Rich

[herb1 in reply to BigRich]

Rich, yes, on IADT-3, i'm at psa <<1 for most of the time; until things go to hell each cycle. That's when I should have had scans, but it hasn't been that way and I'm pissed.

Please don't suggest change oncologists-that could be from fireplace into fire! And, yes, I've been to top doc in NYC-very disappointed.

herb

[BigRich in reply to herb1]

Herb, as you know, there is a difference between a PSA of 1 and a PSA of .1

Let me give you an example a man has back pain and a PSA 0.02 ng/ml and scans shows mets in lymph nodes, bone, and liver.

I don't think a yearly scan is a waste , and if there were 6 scans in 14 years, I don't think you got over scaned.

Rich

[herb1 in reply to BigRich]

Rich, I don't agree; the scans would have been much more useful if they had been targeted for when my psa peaked. That would have been 3 scans. I'll even give you a first scan at low psa for the extreme case you note, but when that was negative, why do it again. What did Einstein say? "hoping to get a different result is fruitless". You're ignoring the exposure in those Cts and bone scans. And TOTALLY IGNORING the emotional effects.

For the record, I had scans at psa's at/near 0.04, 0.82, 2.04, 0.37, 0.24, 0.13, 0.81, 0.1, 0.3, some on ADT3, some off.

herb

[BigRich in reply to herb1]

Herb,

I wish you well.

Rich

[paulofaus]

Awesome post Gus, this is great information. All newly diagnosed guys should be reading this.