any of the old crew still lurking?

[eatmorepork]

Briefly:
I am 71, decent health no daily meds.
Surgery at Emory (Atlanta) 8/1999, I was 49 years old.
Post op the PSA stayed less than 0.1 until ~2013 gradually increasing to 0.49 in Dec 2020.
Surgeon report/pathology from 1999 no seminal vessel involvment.
I was at Emory Radiology/onocology a few weeks ago, Bone Scan and MRI (with and without contrast) were Clear.
There are some clinical trials concerning a PET scan and the trace element to be used (not the proper term, sorry it is late and I am tired), if insurance will approve it. The way I understand it is a PET will show hot spots and the bed will be radiated with additional treatment to the hot spots.
If PET is not approved it will be tradional radiation of the prostate bed.
Thoughts?
I feel like I have beed drinking information from a fire hose.
Is the PSA high enough to be concerned or have treatment? If not when?
Any info you can share please feel free.
Thank YOU in advance.

[LeeLiam]

I'm still here but I haven't seen any other activity in months. Like you, I am a patient at Emory (Dr. Hershatter). I had seeds and external beam in 2006. My PSA was undetectable until a couple of years ago. I had an axumin scan that didn't show much last September. Whille waiting for it they got me into a rhPSMA trial at Emory. I had that last October. It shows a spot on my T8 vertebrae. I will likely hit it with radiation soon. Your PSA sounds very low to me. Have you checked your PSA doubling time?

[eatmorepork]

Good morning,
my PSA is low, when it started increasing my Primary Care Physcian (PCP) told me he was no expert but something is happening and suggested I see a Urologist. Local uroligist were not interested since surgery was performed another hospital. So back to Emory (210 miles round trip), the Dr who performed the surgery had moved and I was assigned to another Dr. I had yearly exams for several years, 2019 visit he told me my PSA was to low to be concerned and I did not need to return to see him, I asked for one more year and he said okay. 2020 visit was canceled by COVID. At my annual exam with PCP in late Dec 2020 PSA had elevated to 0.49. PCP seriously told me to get it checked. I called for a radiologist appointment. Hindsight I screwed up and now have canceled those appoitments and I have an appointment later this month with a Urolgist.
I am not positive on rate of doubling, I need to dig more into the calculations. Do you have a recommended site to determine what it is? How many readings do you enter for accuracy? I have the readings for the past 20 or so years. Thank YOU for responding and good luck the T-8.

[Unquestionably Confused]

First and foremost I would hope that you told that local urologist who
refused to treat you (at least that was my take from your post) that he
should change specialties and become a proctologist. That would seem to
be his true calling as he seems to be a perfect a$$hole!

I underwent the RRP twenty-one years ago tomorrow! Surgery was
performed by Dr. William Catalona the gentleman who developed the PSA test.

All was well until, I think, my third PSA test post op (within 6 months
of my surgery) when my undetectable PSA "jumped" to .04. When I called
Dr. Catalona he told me 1) that sort of thing was NOT unusual and to 2)
simply monitor it going forward because 3) it should settle down AND he
would not consider further treatment until/unless my PSA was => 1.0.

Mind you, this was his advice even though post op pathology indicated he
may have missed a spot as a positive margin was detected.

Long story short: All subsequent PSA screens have come back <0.01

PSA Doubling Time is truly something to consider with regard to further
treatment. As far as I know, the following remains true:

1) most men who live long enough will die WITH prostate cancer at some
level, but not die from it

2) Unless you are unfortunate enough to contract a very aggressive PCa,
treatment IF your life expectancy is < 10 years should be considered
with an eye towards palliative care and/or watchful waiting since odds
are good that you will die WITH the PCa asymptomatic rather than due to
the PCa. IOW preserve what quality of life you have!

Simply, your rate of doubling involves picking a benchmark PSA. If your
measured PSA in 2017 was 0.25 when your PCP brought up the subject and
it was 0.49 last December, your PSA doubling time would be 4 years.
Unless it changes, it would be another 4 years until it reaches the 1.0
level.

I'm no doctor, but that sounds extremely comforting to me if I were
still 71. Even more comforting to me at 75 with other co-morbidity factors.

I'd rest easy with the advice given you by the urologist at Emory.

[LeeLiam]

>> I have an appointment later this month with a Urologist.
> > I am not positive about the rate of doubling, I need to dig more into the calculations. Do you have a recommended site to determine what it is? How many readings do you enter for accuracy? I have the readings for the past 20 or so years. Thank YOU for responding and good luck with the T-8.
> >
First, a urologist is a surgeon. Since you have had surgery, you really don't need a urologist going forward. If you need more treatment, it will either be with radiation (see a radiation oncologist) or with meds (see a medical oncologist). Either way, PSA doubling time will tell you the urgency for treatment.

"The PSA Doubling Time
Treatment selection is heavily influenced by the rate of PSA rise. For example, if the PSA doubles in less than three months (or even less than six months), aggressive combination treatment with Lupron plus radiation (or cryosurgery in men previously treated with radiation) is probably required. If the PSA doubling rate is between six and 12 months, a less aggressive treatment approach with radiation alone, cryosurgery alone or intermittent Lupron would be reasonable. Some men with a PSA-relapsed disease have a condition that grows so slowly and no treatment whatsoever is required. This is the case when it takes more than a year for the PSA to double."

To calculate doubling time, try: https://www.mskcc.org/nomograms/prostate/psa_doubling_time

[eatmorepork]

I have a virtual visit with Uro in a few weeks, I will let you know what discussed and decisions - if any.
Thanks

[I.P. Freely]

I'm still kicking (and windsurfing), but am not following this group as
often as I'd like. (I got turned off in a moderated PC group in which
the moderator openly favored personal attacks but censored even polite
requests for clarification.) Until you woke us up, it was mighty quiet
here. FWIW, I agree with the replies you've gotten here, especially
those advising minimal urgency and taking your case to oncologists
rather than urologists.

My only additional comments would address Lupron and radiation. Firmagon
is a superior medication to Lupron, most radiation oncologists blindly
presume that recurrence warrants prostate bed (fossa) RT with no proof
the cancer hasn't escaped to greener pastures, and there's now an oral
version of Firmagon that both works better and eliminates the injections.

The fire hose comment is spot on. The only relief I've gotten from that
problem is that I finally found a PC clinic and oncologist I trust. I
still skim the research, but not to the extent I did out of necessity
when dealing with major institutions and the federal government's
Standards of Care. When I repeatedly asked my oncologist last winter to
get me back on the water this summer by any means short of killing me
(that's exactly how I put it), he made some careful choices that have
made me feel better than I've felt in years (and my PSA has remained
<0.01 for months now with no cancer meds at all). That's quite a change
from a dozen prescription meds, feeling like road kill, and being told
in 2016 that I have only a couple of years left. I tell him every visit
that I'm fully aware that I'm betting my life and my windsurfing on his
expertise.

I.P. Freely

[LeeLiam]

> When I repeatedly asked my oncologist last winter to
> get me back on the water this summer by any means short of killing me
> (that's exactly how I put it), he made some careful choices that have
> made me feel better than I've felt in years (and my PSA has remained
> <0.01 for months now with no cancer meds at all). That's quite a change
> from a dozen prescription meds, feeling like road kill, and being told
> in 2016 that I have only a couple of years left. I tell him every visit
> that I'm fully aware that I'm betting my life and my windsurfing on his
> expertise.
>
> I.P. Freely

I.P.,
it is great to hear from you.
Is the PC clinic/oncologist you mentioned still Compassionate Oncology? It sounds like the results you have are amazing.
Do they have you on high-dose T?

[I.P. Freely]

No T ... no anticancer meds at all. Compassionate Oncology (COMG) wants
to see how I do on nothing (the OFF phase of intermittent ADT) for a few
months. So far, so good. The C will return, but the longer we can keep
it confused, the better. I see many advances coming in castrate
sensitive PC treatments, and COMG has relied for many years on keeping
it guessing until each new treatment and scan technology becomes
available "in the hope that we die of something else first" ... the only
way to cure advanced PC.

I haven't had to go to LA in a couple of years now. They and my local
oncologist (who implements my COMG protocol and is a very good onc to
boot) have cut my monthly phone and facetime consults (respectively) to
2 and 3 month intervals plus monthly labs. They trust me to keep the
labs coming and to call them if I observe any changes in how I feel.

I.P.

[Alan Meyer]

Hello all.

I haven't checked in to this group, or shadow of a group, in many months.

I'm very glad to see that eatmorepork, I.P Freely, and Lee Liam are all
doing pretty well.

I'm doing fine myself, with no treatment since 2004 for my Gleason 4+3
cancer. I had a combination of HDR brachytherapy, 3DCRT external beam,
and Lupron. It took about 7 years for me to reach a PSA nadir of
0.07/0.08. Since then the PSA has bounced around, getting as high as
0.26 on one test, but always coming down again.

Best of luck to all of you.

Alan

[I.P. Freely]

Thanks for the update and a big HELLO, Alan.

Thunderbird no longer notifies me when there's a fresh post in this
forum, so I tend to forget about it.

I.P.

[replytothegroupplease]

Cleaning up old google groups and was reminded about this one so here goes....
Now in my 18th year post (August 2005) laparoscopic RRP. I was 54 and very lucky that a very astute physician found an asymmetrical prostate at routine checkup.
About 1/3 of the cores of a biopsy were positive. Gleason 3/4, multifocal and all clear margins at the time.
I am a retired physician epidemiologist so it was shall we say, an interesting experience but here I am, still functioning pretty well at 72.
I hope my experience helps remind everyone that this is a bastard of a disease but with luck and good surgery, it's survivable.
Best wishes to all unfortunate enough to be reading this message. Chin up! There are some very long term survivors here and with luck, you will join us.

[Unquestionably Confused]

Still looking down at the grass. RRP, March 2000, courtesy of Dr
William Catalona. Now 23 years in the clear and no sign of stopping.
Celebrated the 23rd anniversary of "Begone PCa" by having a total
replacement of my left knee. Right knee currently in the on deck
circle. LOL!