Hormones not recovering

[Cramlingtonboy]

Six months after my last (3 month dosage) Eligard injection, my PSA level is <0.008 which is great. Unfortunately my testosterone level is <0.4 nmol/L when normal is 8.4 - 28.8 nmol/L.

Should I ask for testosterone injections or just be patient?

[Tall_Allen]

It can take up to a year.

[GP24]

You can ask for a testosterone injection but doctors usually refuse that. Usually testosterone does not recover fully and for some patients it does not at all. See this video:

youtube.com/watch?v=u4TN9mC...(Not working as expected?)

I would take Bicalutamide now. It fights the tumor and should raise the testosterone a bit.

[Cramlingtonboy in reply to GP24]

Thanks for that fascinating and informative video - the long term persistence of ADT was not made clear to me and my expectation was that my testosterone levels would gradually return to normal once Eligard was stopped. In the video, it is made clear that many men; especially those on ADT longer than a year will take much longer to recover T levels back to baseline - if they ever do.

[carbide in reply to GP24]

Great video.I'm done, finished!

Was fun while I had "It".

70 years old.

[treedown]

My MO raised the thought that I don't want my T to return because my PC may come back with it. Not sure that is based in fact though. I guess if this is the scenario I would rather not have T if it means no cancer progression. Again I do not know if my MO is correct as I have read enough to think he might not be. Since I will be on ADT for 4 more months (endnof 2 years) and then stop, if all things remain the same, I guess I will know soon enough.

[Hidden in reply to treedown]

My story is N of 1. So take it with a big grain of salt.

In 2018 during RP surgery I was diagnosed with Gleason 9, T3b/c, invasive APC. My Mayo doctors gave me 3 months before I'd be in the hospital.

I did estrogen patch ADT for 6 months. My T was undectable.

Then I started injections of testosterone. Very large dose (400 mg/week of cypionate). It's been almost 3 years and there is no evidence of disease. My current MO did not prescribe it but knows about it and tells me "keep doing what you're doing because it's working".

I'm a little shocked that more doctors don't think about dying from other causes. I felt that my Mayo docs were ok if I died from a heart attack but not if I died from APC. My new MO does not want me to die, period! And she factors QoL into the therapies.

Again, this is only MY story but apparently testosterone is not the kiss of death that some doctors think it is.

If you decide to try to recover your T, be careful, monitor your cancer progression and PSA before, during, and after. Make decisions based on real data of what is happening to you. Not on case studies (like mine), or flawed opinions or studies.

[treedown in reply to Hidden]

Thanks, I understand what your saying and will see where I stand if I am off the drugs next month. At that point I will watch and monitor the bio markers I have been made aware of on this site as well as some of my own. I have no plans to supplement T at this time but nothing is off the table both of I stay in remission or if I see progression. I am not at center of excellence and my insurance like many here will not pay for me to go to one. That doesn't leave out consulting with one and having the procedures done locally. My current Dr will be open to suggestions in this context. So that's part of my future plan when the time comes that a decision needs to be made. Thanks for your input. So your cancer was or was not contained when your started this?

[Hidden in reply to treedown]

It wasn't contained. It had invaded my bladder wall, seminal vesicles, and lymph nodes. My current PSA is 0.039. My last scans were all negative. Something has happened but I can't state what it was. Luck? Exercise? Did cancer get tired of my immune system attacks?

[treedown in reply to Hidden]

That's great, did this other involvement get diagnosed after your RP? I was not offered RP at all and little that I researched indicated I should have been. I had high PSA, not sure what yours was. Also my PG was pushing into my bladder same as yours. No seminal vesicle involvement on imaging but based on my PSA all the docs were convinced I had much more disease than imaging showed and my insurance denied a Axumin scan. I would have paid out of pocket but all the docs said it would not change my treatment. They tried pretty hard to find LN involvement higher than pelvic but could not so hit me with a lot of radiation up to aortic bifurcation. Anyway, had I known what I know no I may have pushed the issue of RP but too late now. If all goes well I will be content that would not have made any difference for now.

[Hidden in reply to treedown]

The extent of my cancer was diagnosed via RP. RP is a master biopsy. A guided biopsy diagnosed me as a G7, T2, localized, minor PCa. RP changed all that.

My PSA was only 13.

[treedown in reply to Hidden]

So no scans right to RP or did the scans come back clean?

[Hidden in reply to treedown]

I don't recall any scans. I had scans last year and they were clean. My MO didn't expect anything.

[treedown in reply to Hidden]

Make sense. Glad the recent ones are clean. Why did you get the scans recently? My MO saidbthe only reason they will do new scans is if my PSA rises. He seems somewhat unaccepting of the point that disease progression happens w/o a rise in the PSA.

[Hidden in reply to treedown]

I thought I was going to do radiation so a rad onc ordered the scans. After I had the scans done my MO talked me out of radiation. She doesn't want to do anything yet.

[treedown in reply to Hidden]

That's good news, I think. What scans Bone/CT or better ?

[Hidden in reply to treedown]

Bone/CT. Just the basic stuff since I was only doing it to satisfy the rad onc requirements.

[treedown]

Thanks I do trust you. My MO has made a few statements like this that make me wonder. This is my initial treatment so how best will I know how much is killed? How to know the ratio? Surely I will have some idea if/when my PSA rises. Is there a way to be more precise?

[Hidden in reply to treedown]

I have a follow up appt in August with my urologist and you can bet the house I'm not leaving that appt without a plan for getting my T returned to normal levels.

[treedown in reply to Hidden]

Let me know what you find out. My MO made it fairly clear he won't do anything. However, I will ask him to explain his thinking and if it has basis in fact.

[Cramlingtonboy in reply to treedown]

I saw my oncologist today. He wants me to be patient and wait for levels to rise on their own. At this stage, whether I like it or not, I am still under full hormone suppression so the PSA level will continue to be undetectable as long as T is absent.

He will see where things are at in 6 months - hopefully hormone levels will be higher then and if PSA levels are still undetectable that will be a good sign.

He was pleased that I'm taking vitamin D3, calcium (citrate) and other minerals and stressed the need for weight bearing exercise. He didn't offer testosterone shots and I didn't ask knowing what the answer would be.

[treedown in reply to Cramlingtonboy]

Sounds like a few of us are in the same boat or will be soon. Those that came before us can offer options but slow return of T is like being on ADT w/o taking it in some ways but also has all the downsides. Hard call for me to make as I hate to add T and then have to get back on ADT faster if the PC comes back because of it.

[Hidden in reply to treedown]

You will never get an answer. They do not know the answer. All but one has told me no. February 2020 I finished my 18 months of ADT with 39 rounds of radiation. Last three months my testosterone hit a high of 129 back to 85 and last month 125. All of the other 13 months were below 80 and mostly below 50. So maybe it’s finally returning. Good luck with yours.

[Hidden in reply to treedown]

I raised the issue with my MO at my last appt. He wasn't interested in administering anything to help the T recovery..

What's the point of coming off the ADT if the doesn't recover?

I think we discussed this already but there is a shot that can be given that can help men produce T. That is what I will pursue first.

[treedown in reply to Hidden]

I understand and am aware of the shot. That said I wonder if this is a be careful of what you wish for moment. I have time to research so will be clear of my direction by the time the question comes up. That said if the PC rebounds quickly when I stop it is all moot.

[Mascouche in reply to Hidden]

What ended up being the plan to return your T to normal?

[Cramlingtonboy in reply to Mascouche]

Basically be patient and wait. My GP tested my blood levels which are excellent - T is rising slowly. Next PSA test in late November.

[Hidden in reply to Mascouche]

Still working on it.

[EdinBmore]

For whatever it's worth, 1 mo Firmagon, 3 three month injections of Lupron. Last injection was May 2019; in theory, T was supposed to begin to return to normal by August. Docs told me that I'd begin to feel better and that, by December, should be feeling more like my pre-treatment self. Pre-treatment T was a low 250. It's now (April 2021 last blood draw)...drum roll...180. So, bottom line, incredible individual variation. Oh, and, felt like crap until Fall 2020. Go figure.

EdinBaltimore

[dfridge]

Patient. Takes me anywhere from 6-11 months when I do a ADT holiday.

[alephnull]

Testosterone shots, depends on your Gleason and staging of your cancer.

With that low of a PSA, did you have an RP or RT? What was your Gleason? Was your PCa staged?

Typically medical professionals would discourage additional testosterone for PCa patients.

[Cramlingtonboy in reply to alephnull]

Here's the summary from my page:Radical prostatectomy in October 2019 for Gleason 8 disease, pT3b N0, negative margins, extensive EPE, as well as bilateral seminal vesicle invasion with a postoperative PSA of 0.22 and a repeat of 0.21. A PSMA PET scan was obtained after negative conventional staging and did not reveal any evidence of distant metastatic disease. Began an 18-month Eligard treatment curtailed by oncologist after 4, 3-month injections in December 2020. Received postoperative salvage radiation with a stereotactic approach to 30 Gy in 5 fractions, ending in early August 2020.

[Steve507]

RP March 8th, 2019. 0.01 and rose to 0.04 by Sept 2020.

November 2020, I had one subcutaneous injection, 3 month dosage of ADT Zoladex. PSA went from 0.04 to <0.01 in 6 weeks. TESTOSTERONE was 0.9 Then did radiotherapy in February thru mid April. Just last week my energy, potency and libido returned about 80%. Blood work comes in tomorrow.

[Cramlingtonboy in reply to Steve507]

Good luck - hope the PSA stays low!

[Hidden]

How scared are you of APC returning? Many men have been on constant adt for a decade or more . Personally ,my pc specialist says “ stay the course” A true standard of care doctor. I’ve had three different MO in over six years . They all wan5 no change for me because the pc is not seen on scans . Their priority in no pc . The side effects we must own ...If you had APC almost kill you like I did you wouldn’t expect a vacation from adt . We just live in appreciation of no active pc seen . I think returning to the previous us ain’t going to happen for me . We are all different . You might have more options than I do . Good luck if on vacation !

[Hidden]

He might not be correct . But this is the typical SOC approach by most MO’s .

[Hidden]

I just asked my RO if that happened to me and he said he would not prescribe testosterone.