Saw endocrinologist on uPSAs,TRT, aromatase inhibitors (AIs)

This post may help someone researching cases of low-T, TRT, slowly rising uPSA, aromatase inhibitors (AI). Detailed lab results at bottom.

Btw, have never been a big poster here, but did get a lot of help over the years and helped other guys some, too, I guess. Have kinda reached end of road with what I can do on my own PCa situation (it’s stable), so may not be visiting as much. Until my uPSA starts shooting up (ha). But if I see a “new guy” in panic and asking for help, and nobody has answered, I will of course do what I can. We’ve all been there, and it’s scary. Many thanks to all who helped me, and to the mods, who have a thankless task.

Wanted to post results of recent meeting with an endocrinologist, my first and probably last.

Eight years post-RALP. Starting two years after that, with undetectable uPSA, my uro offered to put me on TRT. Back then, my T and symptoms were in worse shape than now. Had gels for 2014/15, then T-cyp injections 2016-18. Went off the shots for short periods when getting worrisome lab numbers. First time off was Feb. 2017 when I first noticed detectable uPSA. Was off six months, uPSA trended down. Got brave again, went back on TRT, but saw quite a rise in 2018. Early Dec 2018 my PSA was detectable even on uro’s standard PSA (also on my uPSA, ~ .050). At my annual visit then, we didn’t even discuss TRT (stay on or off)-- we talked about possible useful scans way down the road, if PSA kept rising a lot higher. Week after that appt., made my own decision to go off TRT. In 2019 uPSAs mostly flatlined, .041 start of year, .041 each of last three monthly tests.

Occasional LabCorp tests on hormones showed free T quite low and E2 (estradiol) quite high (most recent was double the top of lab range). Made significant progress in strength training, aerobics, stress reduction in last year or so, but still had some nagging symptoms. Either age-related (70) or “low-T lite”, who knows (ha).

Made appt. for endocrinologist, taking 7 months to get in, and just went last week. Was hoping for someone that could talk me through everything together (PSA, TRT, AIs, etc.) and maybe give me a low dose AI to see if it could help residual symptoms some without forcing uPSA up. Some studies out there show this is a possible “back door TRT”.

Endo visit was pretty disappointing.

First, she said my labs looked pretty good. Yes, my free T kinda low and E2 high, but “she is a minimalist” about meds. Said the aromatase inhibitors (AIs) are tricky to fine-tune, can cause bad SEs (osteopenia, depression) if push E2 too low. So she wouldn’t recommend AI right now – my labs/symptoms would have to be worse--she didn't say how much worse--I should have asked.

Second, she would never recommend TRT for a guy that’s had prostate cancer. Said T does not cause PCa, but “it can act like adding fuel to the fire” if any is present. I tried to explain Morgentaler’s saturation model to her—she wasn’t buying it. Totally opposite of my uro, who follows the saturation model (see bottom). She mentioned the “add fuel to fire” twice, and she’s young, so I guess that’s still what they teach in med schools. Strange.

Third, she said each field of medicine has its own studies and theories, sometimes ideas cross-pollinate, sometimes the fields just differ on things.

I knew pretty quickly it wasn’t going well. In back of my mind, I was also thinking it wouldn’t be good to be working with a doc that it takes that long to see, esp. if I had something urgent come up. So I cut it short.

She bid me a fond farewell, gave her a hearty “adios, amigo”, and left, pleased that my visit, allocated for forty minutes, went only twenty minutes, and knew I had put her way ahead on her daily schedule. A good deed done!

So, I am at end of road with ideas. Guess will just stay off TRT, not have any AI to try, keep pursuing diet (DIM tablets and anti-estrogenic foods) and exercise approach, get more sleep, etc. Wife has noticed some man-boobs starting, so will ramp up the overhead flys on incline bench. I am definitely better off now than five years ago, so not complaining. But was just trying to “optimize” for the long road. Oh, well, nice try.

Can now back off my monthly uPSAs. Was doing those to make sure I knew my “native trend”, so I could hopefully spot any rise (or fall) in uPSA related to treatments. Will probably test uPSA every two/three months, then go even longer stretches if still mostly flat-lining.

Have made contacts with a few other guys on other boards where we all kinda have same situation. None have come up with much to “put it all together”. Their endos about as “non-helpful” as mine was last week. It’s a mystery to all. One guy’s endo actually asked him, “so what do you want from me?”

Posting at bottom personal lab summaries for anyone researching these topics. Maybe it will help somebody.

Robert


uPSA history:

https://imgur.com/u3m9niq


lab tests of T, etc.:

https://imgur.com/apuor0w


Morgentaler's saturation model:

http://www.ajandrology.com/article.asp?issn=1008-682x;year=2015;volume=17;issue=2;spage=206;epage=211;aulast=morgentaler

Is this your situation?

You are naturally low T (pretty handy with pca but it has its own issues)
You are trying to balance T with pca
You are concerned about your estradiol levels

Is that right?

Do you have a medical background?

JNF said...

Seven months to see a doctor. Are you in England or Canada?
...
I am at a loss as to why you would pursue these drugs to halt PCa, but there is much that I do not know.
...
What are you trying to accomplish?

No, but in some parts of flyover U.S.A., the medical access/quality might make you think England/Canada.

I am putting a post below that just has links about AIs used for men, related mostly to TRT. Not so much for halting PCa, but there is one good book that addresses that:

Dr. Edward Friedman's "The New Testosterone Treatment", pg 163:

"There are two benefits from AIs: First, the systemic reduction of estradiol can improve overall health in men if their estradiol is too high. But the most important thing from our point of view is that local aromatase activity is the cause of carcinogenesis. In prostate cancer, normal prostate epithelial cells have no aromatase activity, but all prostate cancer cells lines have high aromatase activity."

Stephen S said...

.
..(a good summary)...
Is that right?
Do you have a medical background?

Yes, Stephen, you pretty much nailed what I'm after. Thank you. I was too long winded and "buried the lead".

No, I'm not a medical doctor. Been called many things in my life, but not that (ha).

SJO36 said...

I'm considering taking my husband to Morgentaller's practice if we make it to the 2 year mark undetectable.

First, I hope the best for hubby. Second, I envy you if you can both see Morgentaler. From what I've read the last few years, he's the guy I want to see next, if my self-healing steps do not help and I can afford a trip(s) across country.
Robert

Ok. So you struck out with that endo.

How far are you willing to travel?

In the age of the internet (you can find thousands) you should be able to find an endo that will either

1) work with you
2) talk you out of it

You clearly have spent alot of time reading/investigating. Sometimes well educated people are threatened by patients who have opinions, and walking into their offices with a predetermined wish list/course of action goes over like a lead balloon, but if enough people are actively trying to talk you out of it that should give you some pause.

I have no experience or advice about your specific issue but If it were me, I would create a small package of information, and use the postal service to reach out to like 10 endos explaining your understanding and desires. Find one who is willing to work with you. When you do find one meet them face to face and have them work with your local Dr for the actual therapy, and keep an eye on that PSA!

curious to your uPSA history before 2/17 0.024

all < 0.015 correct ?

2/17 was 58 months (~5 years) post RP?

how maniy months TRT occurred before 2/17 0.024 ?

Bobbiesan, could explain this as I am a newbie and pretty ignorant of hormones (along with many other areas despite being a CalTech grad, humulity is a good thing btw)

Was Androgel used to correct low testosterone?

Were the T-cyp shots a larger dose of testosterone?

It is my understanding that testosterone possibly fuels PC which is perhaps why your uPSA was immeasurable for 5 years post RP because of low testosterone?

Went to a support group today where some guy who underwent SRT with ADT was desperate for TRT 5 months later and willing to take the risk.

From the article which was fascinating btw, it seems that testosterone levels were not key but estradiol levels were?

"Serum levels of testosterone and dihydrotestosterone did not correlate with telomere length, but incremental increases in serum estradiol levels were associated with incremental increases in telomere length."

"The next step for researchers is to evaluate whether administering exogenous sex hormones can favorably alter telomere length. If such an effect is demonstrated, then it could provide a step toward understanding how to slow the aging process, he said."

jronne,

Q on low-T: Yes, as you can see from my hormones chart in orig post, my T was running much lower for few years after RALP. Plus my uro took into account symptoms I told him, only one of which was insensitivity in genitals. Perhaps due to bruising of nerve sparing surgery? -- that part and some libido/ed did clear 2-3 yrs out from surgery. My T readings were not always below the "according to Hoyle" 350 mark, but good uros allow some lee-way about that and take symptoms into account too. My uro is a good guy.

Q: Was T-cyp larger dose? Sorry, don't know the conversion gel vs shot. But would warn anyone that the gels can absorb through skin poorly in about 20% cases. Was that my problem with gel, or was I even then aromatasing so much T to estradiol that the gel was pretty useless? -- dunno.

Q: T fuels PC? If you google "Morgentaler + prostate cancer" and look for articles where he explains saturation model and relevant studies, he says "no, or very little" as long as a guy's natural T level is already above saturation point -- ~150 or so, depending on who's study. Unfortunately, for your friend coming off ADT, he probably is not a good TRT candidate, but don't know. Now, as I reported, my endo had never heard of all this - had just been taught in med school that "T adds fuel to PCa fire!" Morgentaler presents at the big AUA/ASTRO conferences and many uros are following his logic now.

To be frank with everyone, I did go off my shots when I saw what I thought was a related rise in uPSA. My uro was surprised at my next meeting. He wasn't worried at all. I am just so worried about SRT + ADT that I thought I better stop the TRT. But. realistically, my uPSA probably would have leveled off somewhere even on TRT. I was just chicken to try it.

On exercise and T: definitely yes! Converted a small bedroom to weight room and run a modified Stronglifts 5/5. Plus spend 5-10 hrs/week at Y on elliptical and yoga classes. But couldn't do that much before retiring and completing a year of accumulated "honey-do" projects. It's a catch-22 though. If you are low-T, it is real hard to get that exercise level. My uro did me a big favor by giving me the TRT to bridge me across to a better life. Now, I marginally don't need the TRT (just have residual symptoms).

btw: I read that weights may raise a guy's T for 24 hrs. So I pick my T blood draws on days where my weights won't affect my T readings. So I don't get tainted T readings. Just food for thought.

Robert

RobLee nice thinking

always recheck assumptions

assume = make an ass out of u and me

got that drilled into my head at 14 by my AP Chemistry teacher, served me well in life including as pretty easy path at CalTech and Silicon Valley

I learn everything from others as I have crossed paths with many helpful people in my 60 years

I would like to learn from your experience(s)

My friend just got early SRT after uPSA rises this summer at Stanford with a newly tenured doctor that carefully listened too and answered all of his questions