no testosterone recovery

[Radars]

I finished rt/ht for locally advanced prostate cancer in 2016 and my testosterone has not recovered.and now I have osteoporosis, I am surprised I have lived this long because no testosterone is dangerous I also have osteosarcopenia and I am at increased risk of other life threatening infections and diseases, is there anyone else in similar positions.

[Tall_Allen]

Why not get TRT?

[Radars in reply to Tall_Allen]

that's only for localized p/c,I saw my oncologist not long ago and he said I have not got p/c and I said then why can't I have any testosterone and he said because there maybe some cancer cells sleeping, I said I have now got severe osteoporosis he said to take 500mg of adcal-d3 which I can't take due to constipation it gave me. I am now on zoledronic acid infusions,

[Tall_Allen in reply to Radars]

I agree TRT is only for those who have been cured.

[Radars in reply to Tall_Allen]

how are you supposed to know if you are cured,I haven't read anywhere that someone with stage 3 is cured.

[Tall_Allen in reply to Radars]

If you have never had any distant metastases, you have had potentially curative therapy, and you have no evidence of disease from PSA or imaging, why not consider yourself cured?

[BeHealthi in reply to Tall_Allen]

I am curious too Tall_Allen. Since you are supporting patients in your group in SouthernCa, have you seen Stage 3 patients being cured? If so, what is the percentage of that, in your opinion? Thanks.

[Jpburns in reply to BeHealthi]

I have some hope of my therapy being curative, and I was diagnosed with stage IV. Do you believe I’m doomed? (I frankly have no idea, but have some hope)

[Tall_Allen in reply to Jpburns]

I think the AJCC staging you are using is not useful. N1 and even some M1a patients can potentially be cured.

[Nusch in reply to Tall_Allen]

Regarding cured: DXed in 2017 without any metastases in scans I’ve had RP plus Taxotere plus ADT. I‘ve had a recurrence in 2021 (only 2-3 tiny pelvic lymph nodes on PSMA Pet/CT), followed by IMRT/VMAT for prostate bed and whole pelvic region plus two years of ADT. Since start of ADT until today PSA is undetectable. I’ve also had complete orchiectomy in 02/2024, so my testosterone will not come back. My doctor doesn’t want to start replacement therapy before 4 more years. Your thoughts? When could I assume that I’m cured?

[Radars in reply to Nusch]

at least you're doctor is including testosterone therapy, I am t3b and finished treatment rt 2016,my oncologist said not a good idea.

[Nusch in reply to Radars]

But only in four years from now.

[Tall_Allen in reply to Nusch]

It's up to you. Medical science doesn't define "cured." They only define "no evidence of disease."

[Nusch in reply to Tall_Allen]

What would you do if you were me?

[Tall_Allen in reply to Nusch]

Only you can answer that.

[Jpburns in reply to Tall_Allen]

It’s interesting that many folks here use very specific coding for the state of their prostate cancer (“M1a,” for example), but I have no idea what my condition is/was at diagnosis, other than the urologist saying it was stage IV. And pointing me to treatment options.

I got diagnosed almost a year ago, and the details kinda fade in my mind. I just looked at the pathology report from the biopsy, and no staging was mentioned, just the results of the individual samples.

Am I a bad patient not know these details?

[Tall_Allen in reply to Jpburns]

All of those terms have defined meanings.

prostatecancer.news/2017/03...

Everyone uses the AJCC staging definitions, but many (like NCCN) depart from AJCC when it comes to risk stratification. AJCC's risk stratification scheme is called Prognostic Stage Groups and are designated with roman numerals, as you have done. The AJCC Prognostic Stage Groups are comparable between cancers, which may be useful for oncologists or insurance, but I don't find them very useful. See Table 4:

acsjournals.onlinelibrary.w...

[Jpburns in reply to Tall_Allen]

So, if I’m reading that correctly, prostate with spread to local lymph glands is… IVA ? Tough to parse all that.

[Tall_Allen in reply to Jpburns]

Correct. But, AJCC allows only conventional imaging, not PET scans.

[Jpburns in reply to Tall_Allen]

Thanks for your help, but man! Is this needlessly complicated!

[Tall_Allen in reply to Jpburns]

It's meant for doctors, not patients.

[Tall_Allen in reply to BeHealthi]

Of course stage pT3 patients can potentially be cured with salvage radiation.

[BeHealthi in reply to Tall_Allen]

Thanks for giving me some hopes Allen and that’s all we can do with this monster.

[Adlon57]

I had what was supposed to be Prostate Cancer, in June 2022, but I have Schwannomatosis NF3, and had two benign tumours/schwannomas on my prostate gland, given all clear in Nov. 2023, but after 20 sessions of radiation, and decapeptyl SR injections, I have deformed chest pectus carinatum, [left over from meningitis, aged 10] which then proved life changing to my "untreatable" rib cage structure, my testosterone almost non-existent😖 [must get that tested🤞]

[Ilovemyhubby96]

my husband stage IV metastasized, bone not effected or any other organs, was told last month the PCa is not curable even if caught early and in no way, shape or form take any testosterone therapy. He was diagnosed in 2003, RAD no radiation (it was recommended but we had no insurance and he wasn’t a fan either). It decided 2017 was the time to start its return! 🙄

[MNGopher in reply to Ilovemyhubby96]

Interesting. My sweet Partner age 64 has Stage 4, advanced aggressive metastatic p cancer, not curable. But hopefully can keep under check with careful due diligence. Received robotic surgery, 6 mo later PET scan hot spot required lymph node radiation. 34 treatments. Hindsight, he should have been placed on HRT 2.5 years ago but opted out by choice. PSA rise was quiet and woke up, doubled by Jul. ‘24. Forward to Sept ‘24 , PET scan revealed a small pelvic bone tumor. Followed up with 5 pinpointed intense radiation treatments. No after effects except tired after treatments. Now will be going on HRT, bone infusion monthly and chemo type daily med. PET scan every 3 months. Waiting for med prescriptions to begin his lifelong (praying for some sort of longevity of life ) of chasing the disease.

With his Aggressive Stage 4…Partners Prostate cancer cells will feed on any remaining testosterone after prostate removal…this is why Partner will now be taking HRT and daily med as testosterone comes from testes and the adrenal gland. (Dr confirmed). Best to you.

[jaebar]

I am looking at SARMS. In fact it might be part of some treatments in the future. Some like Ostarine and 4033 suppress testosterone, but they also target directly muscle building, strength and also bone strength. One must workout a bit with weights to facilitate. Energy and feelings of well being also increase. They are cycled 2 months on 1 off, low to normal dosage, definitely not overdosing (some folks are tempted). I have ostarine coming tomorrow and cardarine, am getting back into working out including biking. Low dose, even every other day to see if that is enough since some have half lives of 40%. There are virtually close to zero side effects on normal to low levels of use. I am also currently on Trelstar at the hospital; my next shot is this Friday.

[Maxone73 in reply to jaebar]

Careful if you have bone mets

[Radars in reply to Maxone73]

I am also looking into sarms because I have t3b p/c and osteosarcopenia, I have lost a lot of mass and strength, I mentioned it to a gp a while ago and he said what's sarms.

[jaebar in reply to Maxone73]

Thanks Maxone. No bone mets, but the doctor thought it was spreading and twice a bone scan showed there were old injuries instead. What have you heard about effects from sarms as to bone mets? I heard that one has to watch sugar, "processed" carbs if bone mets occurs. Ostarine is suppose to strengthen and build the bones, muscles. LGD-4033 builds muscle back up, especially what was lost.

I have used calcium with boron and K2 which helped also with my knee arthritis. Also take omega 3, Concentrated greens, high dose v-c, etc etc

[E2-Guy]

Bro, Sorry to hear about what you are going through! Our thoughts and prayers are with you.

[Cancerat75]

I've read all the replies, and most say don't ask questions, don't contradict your doctor. I'm 77, found gleason 8 localized canceled a year ago. Rt, adt abiraterone. My testosterone dropped to nearly zero. Maybe it will come back, don't know.

But, my psa is less than 0.04. As far as I'm concerned, I'm cured for now. I've read everything available about pca, treatments, outlook. When I'm done with 2 years of treatments, I'll certainly be glad. Whatever happens after that is certainly unknown. But, any issues or treatments are certainly not just the doctor's decision. It's my body.

[Mgtd]

Sometimes it comes down to a choice - quality vs potential quantity of life. That can be a tough one!

[RWRB]

I've been on ADT and Lupron shot since February 2023. I should be done February 2025.Both psa and testosterone have been undetectable with blood work.

I also have osteopenia and trying to fight that with weekly meds.

Major issue for me is side effects from ADT especially testicles and penis have shrunk.

[Jazzman2023 in reply to RWRB]

What weekly meds to you take for ostopenia ? For me they want to do an injection every 6 months. Thanks !

[Radars in reply to Jazzman2023]

weekly meds would be bisphosphonates,like fosamax,a 6 monthly injection sounds like prolia, I am on zoledronic acid infusion once yearly.

[Jazzman2023 in reply to Radars]

Thanks...Yes, it's a prolia injection they want to start me on....

[Radars in reply to Jazzman2023]

I will be going on that when I have finished zoledronic acid infusions, but a bit wary of side effects.

[Jazzman2023 in reply to Radars]

They've not mentioned zoledronic acid infusions, but I've put the Prolia off until after my next DEXA scan results in February. I'm very apprehensive about the SE's of Prolia, as you are...thanks !

[Radars in reply to Jazzman2023]

if you have just got ostopenia,I am surprised that they are putting you on prolia, you are supposed to have bishionates first.

[Jazzman2023 in reply to Radars]

I will ask, thank you

[RWRB in reply to Jazzman2023]

I take 1 tablet once per week.Cannot must remain sitting for 30 minutes so that the tablet doesn't get caught in the throat. Only drink water to swallow pill.

It is Alendronate Sodium tablet.

Im also on over the counter Calcium Citrate with vitamin D3. I take this daily. I won't know how bones are until next year when bone density scan it done. I just watch myself now as not to fall and break anything.

[billyboy3]

it sometimes take a long time for test to bounce back as with me, but it will so latitude and focus on living not worrying

[Radars in reply to billyboy3]

I finished treatment in 2016 and it hasn't come back.

[fast_eddie]

It's the same old story. Good luck finding any urologist or MO that will endorse TRT for any guy diagnosed with PC. Sometimes the 'cure' (no T) is worse than the disease.

[Radars in reply to fast_eddie]

yeah no testosterone is crap and now I have osteoporosis with having no testosterone.

[tunybgur]

Read through all the comments here, has anyone in their mid 70's (or less) recorded any Testosterone recovery after finishing ADT?......we need some hope please

[garyjp9 in reply to tunybgur]

I know a guy who is 80 and stopped Lupron and Zytiga 2 yrs ago, after being on both for 5 years. Has not taken any TRT, yet his T is now > 450 . Meanwhile, mine remains on the ocean floor. So, there is hope for some lucky few of us.

[tunybgur in reply to garyjp9]

I'm sure there must be some statistics out there, also what is the best way of improving the chances of a return to some testosterone? Exercises etc

[fast_eddie in reply to tunybgur]

I was on eligard for six months at age 66. I had hypogonadism (lower than normal T) before starting ADT. My T did recover back to my previous levels a few months after the ADT shot wore off.

[tunybgur in reply to fast_eddie]

Good news 👍

[fast_eddie in reply to tunybgur]

It might have helped that I continued my three times a week workouts that included weight lifting and cardio. Obesity is also the enemy of T; need to trim those extra fat lbs gained while on ADT if that is your situation.

[janebob99]

Estradiol supplements has been proven to grow bone, at 100 times cheaper than Forteo. See Langley et al (2016) and Russell et al (2017), from the Phase-III PATCH study.