Testosterone Recovery

[Ingress]

I guess I don’t understand something. If testosterone supposedly feeds prostate cancer cells, why do many here seemed worried that their testosterone has not recovered? Isn’t it better for the testosterone to be as low as possible versus climbing again and possible feeding the cancer?

[FCoffey]

It's because the narrative that "testosterone feeds prostate cancer cells" is simple, obvious, and wrong. The truth is far more complex and nuanced.

OTOH, the link between normal testosterone levels and enhanced quality of life is extremely strong. Just because men will tolerate chemical castration to treat the disease doesn't mean they want to live the rest of their life that way.

[ASU9195 in reply to FCoffey]

thanks for your comments. Any additional information regarding your first point would be greatly appreciated. I want to go off ADT because my quality of life is nearly nonexistent, but I'm afraid to do so based on the theory that testosterone feeds prostate cancer cells. Again, any information regarding problems with that theory would be super helpful. Thanks in advance.

[Doctorsceptic in reply to ASU9195]

Ok. Think of cancer cells as a mix of some which depend on external testosterone and some which have become independent of it due to mutation. As it develops, the independent cells become dominant. Hence the need for other forms of therapy.

That’s a fairly over simplified version.

Personally I hate the effects of T suppression and at least for the moment off it. I favour quality over quantity.

[ASU9195 in reply to Doctorsceptic]

Thank you so much for that input!

[Ingress in reply to ASU9195]

Agreed. That’s what I’m trying to find out but so far it really hasn’t happened.

[PTC2 in reply to ASU9195]

Watch the Professor Morganteller, on Grand Rounds in Urology. He contradicts everything that's been said and believed since the two doctors in the 1940's.

[PTC2 in reply to ASU9195]

Watch Prof Morganteller, Grand Rounds in Urology, YouTube. After missing my cancer numerous times and taking 11 years to diagnose me, following Prostatectomy, they soon tried to get me on Bicalutamide. Since, I'm being monitored twice a year. Currently, PSA is 9.7.

[Ingress in reply to FCoffey]

I’m not tracking how the narrative is wrong. If it’s so wrong, why is that the SOC? Any actual reference(s) to support your statement?

Your second point has nothing to do with my original question

[PTC2 in reply to Ingress]

Many experts agree to disagree. Watch Prof Morganteller, Grand Rounds in Urology, YouTube.

[Tall_Allen]

You have to look at the situations of the patients. If therapy was curative, there is no harm in recovering T. Some patients take vacations where they let T recover for a while.

[Ingress in reply to Tall_Allen]

I’m writing as a Stage 4b and was under the impression being considered cured is not an option.

[Tall_Allen in reply to Ingress]

Correct.

[Wgly in reply to Tall_Allen]

So why wait for recovery of T? Why not simply get a shot? Maybe a reduced one.

[Tall_Allen in reply to Wgly]

Because TRT prevents natural T recovery.

[Wgly in reply to Tall_Allen]

Indeed, but if your objective is to reach your goal or age level of T, why wait, and as well it may not happen

[Tall_Allen in reply to Wgly]

Because once you start it, you will always need it.

[janebob99]

You might consider BAT therapy.

[Mgtd]

I had to read this thread a couple of times. It may be me or the fact that I have not had my second cup of tea yet but please correct me if I missed Ingress’ original post intent. The way I read it he wanted to know why T rises was discussed so much when to him it conflicts with the traditional SOC of keeping T low to fight the cancer.

In general it is better for disease control to have low T. This is the reason why ADT in 1 and 2 generations of medicines have developed over the years.

Now comes the reasons for wanting T to return. These are not listed in any order of ranking or priority and others may have other desires.

1. Lack of sexual function.

2. Effects on quality of life.

3. Concern over health issues down the road because of long term usage. Impact on heart, bones, memory loss, etc.

4. Financial burden.

[Ingress in reply to Mgtd]

Thanks and you understood and actually answered what I was asking. Thanks again.

[RMontana]

TET levels are correlated to improved QOL (quality of life), so most men worry about their low TET and most likely associate it with a myriad of symptoms that follow its reduction. Assuming that same man needs ADT then their question is, 'when can I get my TET back to normal?' More importantly, what are the impacts of this TET return, vis a vis PCa? This podcast sheds some light on these questions. But TET is key to health for men; we are not made to be without it, can tolerate its absence for some measured amount of time and need to get 'back to normal' if at all possible, ASAP. Rick

healthunlocked.com/active-s...

Conversely, here is Lift without TET; not much good news.

healthunlocked.com/active-s...

[Explorer08]

I was on Orgovyx for one year and then took an ADT vacation. Over time T came back but PSA rose as well. Now I will be on Orgovyx for the rest of my life. Gleason 9 which explains it all, I think.

[treedown]

It was the case with me after initial treatment. T came back and so did cancer. So for those cured it's understandable, for this not cured, not so much.

[SpencerBoy11]

Well, let's see how it goes with me! After 5 years of ADT and being undetectable, the fatigue I get from it along with the double fatigue my MDS-RS has become unbearable. Monday, I asked MO to stop and he agreed. At 86 I doubt if I get any testosterone recovery. If I'm still on this side of the dirt, I will let you all know when I know.

[Hawk56]

I an not sure I cam answer your question from a medical standpoint. I can relate my experience as laid out in the attached clinical history. Mine is an aggressive PCa, considered high risk - GS 8, GG4, PSA doubling and velocity times, time to BCR after a "highly successful" surgery,

When I completed triplet therapy in May 2017 after BCR from surgery and the failure of SRT with my last 90 day Lupron shot (we had planned to do 24 months, agreed to stop at 18 based on data from a variety of clinical trials and studies about 6 vs 12 vs 18 vs 24 vs 36 and my response to treatment.

That last shot would have theoretically begun to clear my system starting in August 2017. By October 2017 T was 135, by February 2018, 400+

Prevailing theory says given my high-risk status, PCa should have begun to recur within the first 12 months after coming off treatment. And yet, my clinical data says it did not until March 2022 when it began its continuous rise from .06 to ,77 a year later and I went back in treatment (for a defined period, 12 months)

August 2017 to March 2022, over 4-1/2 years. My medical team had no explanation. for the fact that my PCa did not recur earlier, the somewhat fast return of my T and the fact that my T when starting triplet therapy was just under 300 and seven years later, 600 when we started treatment in April 2023. There are some articles about the role exercise plays in T recovery, I'm pretty active. Is that why, who knows. So far, I am at the three months point this time, waiting on my labs from this morning to see what the PSA is (T is now at 447) to see if we made it to six months...!

I did have one urologist along the way utter the words "lifetime ADT, monotherapy...!" Needless to say, I fired him.

This is a homogeneous, not heterogeneous disease. Throw in statistics, mean, mode, median, average, Bell Curve,..well, makes it difficult to decide often since the standard of care is population based and historical given the pace of medical research and the plethora of new agents for treatment.

So, you will have to decide, if you stay on continuous ADT, you generally understand the side effects and the risks, If you decide the intermittent ADT, you cannot be certain of testosterone recovery, if or when your disease recurs...you can reasonably expect a better quality of life and may kick r4esistantce down the road.

If you go intermittent, part of the risk mitigation is actively monitoring, labs and consults every three months or so and decision criteria to go back on treatment, when, with what, for how long. I think you have to have decision criteria about treatment - doublet or triplet, radiation, imaging, how long...

Time on ADT, 18 and 12 months has been with the usual side effects, hot flashes, fatigue, muscle and joint stiffness, genitalia shrinkage (no loss of libido, depressions...). Annoying but not life altering. In part that was mitigation through diet, exercise and managing stress.

Kevin

Clinical History

[awb1]

I'm at 20 years from dx.  Many protocols under my belt.  The last 2 years have been remarkable for QOL.  It's taken a few years of risky experimentation but BAT is working for me. Until 3 years ago, I've had multiple recurrences, 1 or 2 lymph nodes at a time, detected when PSA rises above .01 and easily confirmed with a PET.  

Read up on Denmeade's work.  For me, 28 days is too short, can't bottom out on T.  I find that a 7 week (50 day) cycle works well.  T-cyp plus androgel the 1st 3 days, light androgel weeks 2-6 and a week of withdrawal.  I throw in a single dose of enzalutamide (160 mg) for the last week when my T is back down. That's 7 cycles a year. There's a few crappy days, mostly mood, then I ramp again.  Life is great!

I assume I have a low level of androgen dependent and androgen independent PCa cells in circulation and BAT is keeping them each suppressed, too long on or off T will permit one side to grow and evolve. Good luck to everyone!