Post therapy Testosterone

Posted by michael219 @michael219, Dec 9, 2023

I would be interested to hear about anyone’s experience concerning Testosterone therapy after Proton radiation and hormone pills. Earlier this year (2023) I had 29 Proton treatments followed by Orgovyx pills (stopped the pills at the end of August & still feeling the effects to some degree).

Before my Prostate cancer diagnosis, I was on Testosterone therapy injections for over a decade due to low levels. My T blood level was 770 (range approx. 350 – 850) at the time of my diagnosis when I immediately stopped the injections. My T level dropped to 55 within a month and as of the other day, it is now 16, with a PSA of 0.03.

Due to the low T levels, I am experiencing a significant lack of energy, muscle, and joint discomfort, extremely low libido, and more.
My Radiation Oncologist has advised against any TRT for 2+ years which appears to be the norm in the USA. There are studies out of Europe that appear to disagree with how PC is treated in the USA, even saying that TRT might be helpful.

I continue to push through this and play Pickleball 4-5 times a week with the hope my T levels will naturally increase but from the end of August, my level has gone from < 12 to only 16.

So, my question is has anyone on here seen/experienced any of the above, or heard anything different about TRT (Testosterone Replacement Therapy) after treatment has been completed?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@billfarm

Been having a thought about this. 5 decades ago my phd candidate grad asst. leaked some off the record research he was doing. He was making synthetic thc in the lab. To his disappointment it was the wrong isomer and had no buzz. My thought here is that synthetic testosterone might be similar, no feed for pc but good for body. Anyone read anything along these lines?

Jump to this post

There is still concern with TRT after PC treatment. My Uro changed my PSA testing from every 6 months back to 3. He said as long as your PSA remains undetectable you don't have PC. Once it starts to rise, different story. 16 months on TRT and my PSA this month was 0.007.

REPLY
@rockinat59

There is still concern with TRT after PC treatment. My Uro changed my PSA testing from every 6 months back to 3. He said as long as your PSA remains undetectable you don't have PC. Once it starts to rise, different story. 16 months on TRT and my PSA this month was 0.007.

Jump to this post

rockinat59,
If I read your comment correctly, you have been on TRT after PC treatment was completed? If so, how soon after did you start/re-start TRT, what was the delivery method, dosage, and frequency? Thanks!

REPLY
@rockinat59

While I had surgery for my cancer I would like to share my experience with TRT. I experienced fatigue for years prior to my surgery. I had low B-12 which requires monthly injections. Extremely helpful but I still had some fatigue after surgery. Went to my wife's Internist who diagnosed my low T. Like the original poster, I was told I need to have undetectable PSA for two years after surgery before I can have TRT. I'm one of those people who has to know "why" whenever I'm told something. I read many studies that support TRT does not cause BCR. Went back to my Urologist who agreed and prescribed me daily T injections. They became too intense for me so I went to an Endocrinologist for further testing. He also agreed TRT does not cause BCR. He put me on Androgel which works great for me. I believe many Doctors stick with what they were taught years ago and aren't informed with newer studies. My post-operative biopsy showed high risk for BCR with EPE+ and SM+. I am very comfortable taking TRT and my PSA remains undetectable three years after surgery.

Jump to this post

Daily? I take Testosterone Cypionate/DHEA injectable once a week. When I started two years ago it was every two weeks. I was also taking B12 three times a week. I do not think my insurance would cover Androgel.

REPLY

"Radiotherapy with or without androgen deprivation therapy in intermediate risk prostate cancer. "Another study that is interesting for me is "Testosterone Therapy after Radiation Therapy for Low, Intermediate, and High Risk Prostate Cancer". Then there is "How testosterone therapy use in men with prostate cancer has evolved". More interesting reading is "Testosterone replacement therapy and prostate cancer. An updated systematic review with a focus on previous or active localized prostate cancer." "Prevalence of prostate cancer among hypogonadal men with prostate-specific antigen levels of 4.0 ng/ml or less". This was me at 2.9. The ratio of serum testosterone to prostate specific antigen predicts prostate cancer in hypogonadal men". Seems if we are too low on T it is actually bad for us men. Did I give you enough studies? Oh, here is one more "Low testosterone linked to Hospitalization for COVID". When I go see my oncology team, I bring copies of all these studies with me with the important parts highlighted in orange highlighter. Why did I stop taking my testosterone replacement and self castrate? Just hedging my bets and since it was summertime here in Phoenix and hot it was nice to be able to jump into my pool without having to wash off the Androgel first.

REPLY
@michael219

rockinat59,
If I read your comment correctly, you have been on TRT after PC treatment was completed? If so, how soon after did you start/re-start TRT, what was the delivery method, dosage, and frequency? Thanks!

Jump to this post

I started testosterone therapy 20 months after my surgery. Looking back, I was probably hypogonadal for several years prior to surgery. I thought all the fatigue was caused by my low B12 and my PCP never tested my T level. Shame on him! I injected daily with only 0.07 mg. Small diabetic needle delivers just under the skin. This avoids the extreme highs and lows of bi-weekly or monthly injections. My Uro suggested this smaller, daily dosage as he uses it for himself. Worked great. T went from 186 to 750 pretty quickly. Side effects were too extreme for me. Daily Androgel keeps my T around 550. Much more comfortable for me.

REPLY

Hi Michael,
Thanks for your post and inquiry. As you know, the PC journey is a very individual experience with choices we make that best fit our own personal needs, desires, risk attitudes, health community considerations, recommendations from our medical care team and other information gathered from various sources.
I had been on TRT for about 11 years before getting diagnosed with PC. Thankfully, I had been continually monitoring my PSA and other blood markers during that time. I am 69 years old. Before starting my TRT, I had HYPOGONADISM, my T was very low. I have also been seriously debilitated from CFS, CHRONIC FATIGUE SYNDROME and FIBROMYALGIA the past 33 years. Although the TRT did not improve my disabilities, bringing my LOW T up into the normal ranges improved my overall wellbeing and functionality in a very measurable way. Of course, when I got diagnosed with PC I had to immediately discontinue my TRT. There is a common understanding and agreement that once you have PC, Testosterone will feed the cancer.
I decided to have a RALP performed. 100% of the detectable cancer was confined to my Prostate. I also like the idea of removing the PSA producing mechanism out of my body. Sure, I would prefer to keep my Prostate. However, it made sense to me to get rid of the main source which was causing my cancer! I was a real mess without my TRT. Absolutely no energy, libido, feeling very weak, lifeless and could feel the adverse effects of my Total T going down to levels between 20-90!
I won’t explain all of my research findings as they are all available to you and everyone else who’s interested in learning what the most recent and current research has to say about Testosterone Replacement Therapy following a successful Radical Prostatectomy. I was off of my TRT for 1 month prior to my surgery and resumed it 5 months after my surgery.
My PSA was < 00.14, ( undetectable), the day of my surgery on 10/25/22 and has remained the exact same through today! (Been back on my TRT for almost 9 months now)!
Every man requires a certain amount of T in their body to maintain overall good health and well-being, stronger muscles mass and bones along with a healthy libido and a good mental outlook with a positive attitude. As you know, ADT pretty much eliminates all of the above.
Many physicians are recommending the use of TRT to assist their PC Patients to help recover better, faster and with an improved overall result utilizing TRT!
What convinced me was the following. “If as doctors, we recommend the use of TRT to patients who don’t have PC nor have ever had it and feel that it’s a safe modality for them to utilize if their T levels are low or they suffer from HYPOGONADISM then why should we deny men who’ve had a successful radical prostatectomy and are cancer free, (undetectable cancer) that they should not be able to utilize TRT? If we agree that it’s safe for the former than it should be safe for the ladder!”
Obviously, there’s NO GUARANTEES about anything when it comes to PC. There are plenty of patients who were on ADT and LUPRON injections where their cancer returned! There’s great consideration being given to the possibility that not maintaining enough T in the body can actually precipitate the return of PC!
We all should be closely monitoring our PSA and other blood markers consistently once we’ve contracted PC. Like all responsible patients and physicians, we will recommend whatever treatment protocols are appropriate if we experience a BCR or another type of cancer complication.
Speaking for myself, continuing with my TRT turned my overall recovery around and significantly improved every aspect of my personal wellbeing and continues to do so today.
Again, it’s a personal choice but much of the past controversy surrounding PC and Testosterone was based on weak and incomplete testing that very old and long outdated. Very little of today’s research and current patient cohort studies would agree with those past findings from the 1940’s!
Best wishes with your journey and find a physician and members of a health care team that will support you in your desire to pursue TRT as part of your recovery strategy. There are numerous opportunities available.
GODSPEED

REPLY

I agree that there are differing opinions, but from personal experience and what I have read, testosterone feeds PC similar to fertilizer for plants.

I was diagnosed with G9 over 2 years ago that appeared to be confined to my prostate by Imaging studies. I underwent a RP in Oct 2021. First PSA 6 weeks later was .013, almost undetectable. Two months later .37. PSMA PET revealed a single met at T8. After much research and consultation I had SBRT to T8-still on no medication. Three months later PSA had risen to 4.6 ! Rapid doubling time-not good. Time to consult Medical Oncology. Again, much research led me to Johns Hopkins. Another PSMA PET showed a < 1cm node in pelvis. Cancer at T8 appeared killed. Immediately started on Lupron with testosterone dropping to < 30 in 2 weeks and PSA dropping to 0.2. Went on chemo (Taxotere) and Darolutamide. PSA rapidly undetectable and has remained so for the last year. My last Lupron shot was July-on it one year. My last testosterone level was < 3 with undetectable PSA (2 weeks ago).

In my particular circumstance there is no way I would take replacement testosterone. The point of the Lupron is to eliminate testosterone so the cancer will stop growing and make it more susceptible to radiation and chemo. My Oncologist said their experience is the testosterone recovers in 9-12 months after cessation of Lupron. That is when the PC will reveal itself if there is any remaining.

I am suffering from the side effects of castration level testosterone and am eager for it to return. Conversely, I am not interested in waking up any residual cancer cells by an injection of testosterone. I will let my body slowly recover. If I don't get a return to normal levels I will deal with that in a year or so.

Good luck to everyone on their individual journey. In this disease there is no one size fits all treatment.

REPLY

Good day all,
So I am back with another Testosterone question regarding your experiences (by the way I am 69).
I was allowed to stop taking Orgovyx on August 31, 2023, as my PSA was negligible. My bloodwork on 3/28/24 shows a PSA of 0.05 and a T level of 16 (yikes).

My RO originally thought my T level would rise much higher but I was doubtful being I was on TRT for over 16 years and had a pre-diagnosis level of 770.
During my tele-visit with my RO/NP, they acknowledged the challenges of the low T (fatigue, muscle weakness and joint issues, weight gain, and zero libido. While they acknowledge some of the studies that show testosterone therapy does not negatively impact post-prostate cancer men, they are not convinced,,,,,,, yet.
I met with my urologist yesterday and he expressed some of the same concerns, He also questions that if a man's T level increases on its own, why is that ok, yet TRT is not good/safe...?

He wrote a prescription for a low-dose T shot every 10-14 days with 90-day blood tests. I am seriously considering it as my QOL has been so significantly impacted. Oh yes, the hot flashes continue, 7 months since my last ADT pill.

My question to you all is, did your T level increase after ADT, and if so, how long did it take and what did it increase from and to?
Thank you - this forum has been very helpful!!

REPLY
Please sign in or register to post a reply.