TRT after treatment for prostate cancer

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D0UG

Member
In the spring of 2020 after being on TRT for 5 years, I stopped suddenly last year when I was diagnosed with prostate cancer with 9 of 12 biopsy cores were cancerous and Gleason score of 6. There was no abnormality detected in rectal exams. My PSA had gradually increased to 11 over a period of 12 years. I had no health insurance over half that time so did not see an urologist. I was scheduled for a prostatectomy but a radiation oncologist convinced me that external beam radiation would be better for me as it should kill all the cancer cells and have lower risk of ED. The treatment for cancer was delayed by the hospital due to the COVID-19 pandemic. In the meantime, I was diagnosed with an artery condition requiring heart-bypass surgery CABG in June 2020.

My PSA dropped to 2 after stopping the T injections but the radiation oncologist insisted that I should still get a shot to begin ADT. I received a shot of Lupron in 8/2020. A few weeks later, my T was 10. It was 980 and free T was 31 when I was under TRT. I had 28 days of radiation treatments in 11/2020. PSA was unmeasurable at that time.

In February 2021, the radiation oncologist wanted to give me another injection of Lupron but I refused. I had read several articles and the NCCN Guidelines for Prostate Cancer stating that ADT was not recommended for the level of cancer that I was diagnosed with. Since September 2020, I have had the following problems:

• I have lost muscle mass and gained 3 inches in waist fat. I was muscular before.
• Both RBC and WBC are now below 2. They were both at 5.5 before.
• I have terrible ED. Penis is noticeably smaller now and curved.
• Energy level is low. I get tired easily and have no stamina.
• I am 62 years old but feel like 80. Before, people thought I was in my late 40s.
• Libido is dreamed about but not experienced.
• I have terrible pain in all my fingers. No one seems to know why. The orthopedic hand surgeon said she has never heard of tendonitis suddenly striking all fingers at the same time. I have not been able to open a bottle of water or make a fist in over 6 months.
• My mind wanders. I have difficulty focusing. This has affected my work.
• Developed plantar fasciitis in my right foot that makes walking or standing very painful some days and tolerable other days. Never had any foot problems before.
• I have severe hot flashes that leave me exhausted and my shirt soaked. It is embarrassing when in public.

I walk at least 2 miles every day but cannot do any exercise that involves my hands.
18 months ago, I could do 50 sit-ups and 50 single-arm curls with a 45 lb. dumb-bell. Today, I struggle to do anything physical. A recent blood test shows my T is now 21 and PSA is still unmeasurable.

My urologist recently indicated that he is unwilling to put me on TRT again ever due to the prostate cancer. While he has no answers for all my symptoms now, he does not believe they are hormone related. I had none of these problems before stopping TRT. I have lost confidence in the urologist. This is depressing. I don’t know how to find a urologist or other doctor that has experience with someone like me.
 
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Systemlord

Member
TRT does not worsen or cause prostate cancer, you need an up to date doctor to treat you.


The use of testosterone therapy in men with prostate cancer was previously contraindicated, although recent data challenge this axiom. Over the past 2 decades, there has been a dramatic paradigm shift in beliefs, attitude, and treatment of testosterone deficiency in men with prostate cancer.

The historical notion that increasing testosterone was responsible for prostate cancer growth was based on elegant yet limited studies from the 1940s and anecdotal case reports. Current evidence reveals that high endogenous androgen levels do not increase the risk of a prostate cancer diagnosis. Similarly, testosterone therapy in men with testosterone deficiency does not appear to increase prostate cancer risk or the likelihood of a more aggressive disease at prostate cancer diagnosis.
 

Bruce K

New Member
In the spring of 2020 after being on TRT for 5 years, I stopped suddenly last year when I was diagnosed with prostate cancer with 9 of 12 biopsy cores were cancerous and Gleason score of 6. There was no abnormality detected in rectal exams. My PSA had gradually increased to 11 over a period of 12 years. I had no health insurance over half that time so did not see an urologist. I was scheduled for a prostatectomy but a radiation oncologist convinced me that external beam radiation would be better for me as it should kill all the cancer cells and have lower risk of ED. The treatment for cancer was delayed by the hospital due to the COVID-19 pandemic. In the meantime, I was diagnosed with an artery condition requiring heart-bypass surgery CABG in June 2020.

My PSA dropped to 2 after stopping the T injections but the radiation oncologist insisted that I should still get a shot to begin ADT. I received a shot of Lupron in 8/2020. A few weeks later, my T was 10. It was 980 and free T was 31 when I was under TRT. I had 28 days of radiation treatments in 11/2020. PSA was unmeasurable at that time.

In February 2021, the radiation oncologist wanted to give me another injection of Lupron but I refused. I had read several articles and the NCCN Guidelines for Prostate Cancer stating that ADT was not recommended for the level of cancer that I was diagnosed with. Since September 2020, I have had the following problems:

• I have lost muscle mass and gained 3 inches in waist fat. I was muscular before.
• Both RBC and WBC are now below 2. They were both at 5.5 before.
• I have terrible ED. Penis is noticeably smaller now and curved.
• Energy level is low. I get tired easily and have no stamina.
• I am 62 years old but feel like 80. Before, people thought I was in my late 40s.
• Libido is dreamed about but not experienced.
• I have terrible pain in all my fingers. No one seems to know why. The orthopedic hand surgeon said she has never heard of tendonitis suddenly striking all fingers at the same time. I have not been able to open a bottle of water or make a fist in over 6 months.
• My mind wanders. I have difficulty focusing. This has affected my work.
• Developed plantar fasciitis in my right foot that makes walking or standing very painful some days and tolerable other days. Never had any foot problems before.
• I have severe hot flashes that leave me exhausted and my shirt soaked. It is embarrassing when in public.

I walk at least 2 miles every day but cannot do any exercise that involves my hands.
18 months ago, I could do 50 sit-ups and 50 single-arm curls with a 45 lb. dumb-bell. Today, I struggle to do anything physical. A recent blood test shows my T is now 21 and PSA is still unmeasurable.

My urologist recently indicated that he is unwilling to put me on TRT again ever due to the prostate cancer. While he has no answers for all my symptoms now, he does not believe they are hormone related. I had none of these problems before stopping TRT. I have lost confidence in the urologist. This is depressing. I don’t know how to find a urologist or other doctor that has experience with someone like me.

My story is almost exactly like yours except I had my prostate removed. I feel your pain. I'm thinking we may have to shop around for a different trt doctor or self medicate. I hate to say it but I leaning towards the second option.


Read everything Madman has on prostate cancer.
 
Last edited:

D0UG

Member
Systemlord, I agree and have read much literature that indicates that testosterone does not cause cancer. The hormone doctor (not an urologist) that put me on T in 2014 is in another state 4 hours away where I worked at the time. He contends that if T caused prostate cancer, there would be a lot of 30 year old men with prostate cancer. He suspects that the drop in T may be a more likely cause of prostate cancer but there are no significant studies involving males with sustained T levels from 20-70 years old. Without the study, doctors are inclined to rely on any accepted data that can get. My urologist's reservation is that T can cause any cancers cells that were not killed by radiation to become more active/robust.
 

D0UG

Member
Bruce, the challenge is finding a doctor with experience with patients like us. My urologist has not treated a 60 year old who has been on TRT for 5 years. He wants to allow my T to increase naturally but all that I have read says that is highly unlikely after 5 years of TRT. In the last year, my T has increased from 10 to 21. I don't consider this a path to normal T level.

I could self-medicate but that leaves me bearing all the costs. I pay a lot for health insurance now and would like for my insurance to cover TRT which it will if prescribed by an urologist. I was paying the hormone doctor $1,000/year plus the costs of the bio-identical T serum to inject which was probably another $500/year.
 

broker

Active Member
Doug
a normal T level is between 300-900.
your T level was 20 ??? How long were you off T when you got that number?
did you have your prostate removed? did any other meds cause a decline in T levels?
 

D0UG

Member
I was under ADT - Androgen Depravation Therapy or Chemical Castration. It is common to suppress testosterone in conjunction with radiation or surgery for prostate cancer. That was nearly a year ago but it is now only 21. I have read that once under TRT for several years, the body will often not produce T again.
 

Systemlord

Member
I have read that once under TRT for several years, the body will often not produce T again.
Most guys will regain normal HPTA function after ceasing TRT, but the longer you're on TRT the harder it can be to return to baseline. There have been many cases where men were on TRT and return to baseline even after several years or cease TRT to restore fertility and then hop back on TRT.

I was on TRT for two and a half years, stopped TRT and return to baseline quickly (4.5 weeks) without any medical assistance. Then eight months later got back on TRT.
 
Doug: I got on TRT after being diagnosed with prostate cancer (Gleason 7) at age 65 and going on active surveillance for it. I became convinced after reading books by Dr. Morgentaler (Testosterone for Life) and Dr. Friedman (The New Testosterone Treatment) that testosterone supplementation not only doesn't fuel prostate cancer cells, but may help kill them, or at least keep them under control. Now my T levels are high, libido and erections are great, and my PSA is staying in the 4-5 range. The cancer is still there, but staying indolent and not affecting my life whatsoever, other than needing to keep an eye on it.

Your quality of life, as you describe it, frankly sucks. In your shoes, I'd definitely get on TRT. There are lots of clinics and compounding pharmacies that will get you set up via telemed sessions (e.g., Empower).
 

D0UG

Member
Most guys will regain normal HPTA function after ceasing TRT, but the longer you're on TRT the harder it can be to return to baseline. There have been many cases where men were on TRT and return to baseline even after several years or cease TRT to restore fertility and then hop back on TRT.

I was on TRT for two and a half years, stopped TRT and return to baseline quickly (4.5 weeks) without any medical assistance. Then eight months later got back on TRT.
Thanks for the info. I'm not familiar with other men's experience with TRT. I was on TRT for 6 years beginning at 56 years old. 18 months after stopping TRT, my T is still about 20. I did get one shot of Lupron for ADT last August but that was supposed to last 6 months max.
 

tcmi

Member
It’s puzzling why your urologist would insist on ADT for Gleason 6 cancer. I’m Gleason 7 and having surgery in two weeks at MSKCC and my urologist is fine with my TRT (assuming no surprises during surgery). One of the primary reasons I chose surgery is it’s compatibility with TRT. Meaning that if your prostate is removed, the PSA becomes an excellent monitoring tool while on TRT. In any case, you need to find a urologist that has a large prostate cancer practice and is familiar / comfortable with TRT. Nonetheless, my gut tells me that many docs will be a little more uncomfortable having had radiation as opposed to surgery. Good luck!
 

madman

Super Moderator
In the spring of 2020 after being on TRT for 5 years, I stopped suddenly last year when I was diagnosed with prostate cancer with 9 of 12 biopsy cores were cancerous and Gleason score of 6. There was no abnormality detected in rectal exams. My PSA had gradually increased to 11 over a period of 12 years. I had no health insurance over half that time so did not see an urologist. I was scheduled for a prostatectomy but a radiation oncologist convinced me that external beam radiation would be better for me as it should kill all the cancer cells and have lower risk of ED. The treatment for cancer was delayed by the hospital due to the COVID-19 pandemic. In the meantime, I was diagnosed with an artery condition requiring heart-bypass surgery CABG in June 2020.

My PSA dropped to 2 after stopping the T injections but the radiation oncologist insisted that I should still get a shot to begin ADT. I received a shot of Lupron in 8/2020. A few weeks later, my T was 10. It was 980 and free T was 31 when I was under TRT. I had 28 days of radiation treatments in 11/2020. PSA was unmeasurable at that time.

In February 2021, the radiation oncologist wanted to give me another injection of Lupron but I refused. I had read several articles and the NCCN Guidelines for Prostate Cancer stating that ADT was not recommended for the level of cancer that I was diagnosed with. Since September 2020, I have had the following problems:

• I have lost muscle mass and gained 3 inches in waist fat. I was muscular before.
• Both RBC and WBC are now below 2. They were both at 5.5 before.
• I have terrible ED. Penis is noticeably smaller now and curved.
• Energy level is low. I get tired easily and have no stamina.
• I am 62 years old but feel like 80. Before, people thought I was in my late 40s.
• Libido is dreamed about but not experienced.
• I have terrible pain in all my fingers. No one seems to know why. The orthopedic hand surgeon said she has never heard of tendonitis suddenly striking all fingers at the same time. I have not been able to open a bottle of water or make a fist in over 6 months.
• My mind wanders. I have difficulty focusing. This has affected my work.
• Developed plantar fasciitis in my right foot that makes walking or standing very painful some days and tolerable other days. Never had any foot problems before.
• I have severe hot flashes that leave me exhausted and my shirt soaked. It is embarrassing when in public.

I walk at least 2 miles every day but cannot do any exercise that involves my hands.

18 months ago, I could do 50 sit-ups and 50 single-arm curls with a 45 lb. dumb-bell. Today, I struggle to do anything physical. A recent blood test shows my T is now 21 and PSA is still unmeasurable.

My urologist recently indicated that he is unwilling to put me on TRT again ever due to the prostate cancer. While he has no answers for all my symptoms now, he does not believe they are hormone related.
I had none of these problems before stopping TRT. I have lost confidence in the urologist. This is depressing. I don’t know how to find a urologist or other doctor that has experience with someone like me.

Sorry to hear you have been going through this.

Your T levels are horribly low.....21 ng/dL and hard to believe anyone could deal with such.

Having such levels is far from healthy let alone would negatively impact your overall health in the long run.

Here is one of the more recent papers regarding PCa/TTh.



Treatment of Testosterone Deficiency With TTh After External Beam Radiation Therapy

EBRT, which involves the delivery of radiation externally to target tumor cells, is the most used form of radiation in locally advanced prostate cancer. It has been demonstrated to be ineffective when used alone, so the combination with hormonal therapy has traditionally been observed.39 In a study by Morales et al, 5 men with symptoms of testosterone deficiency after EBRT were treated with TTh.40 2 patients had Gleason scores of 6, one had a score of 7, and 2 had scores of 8. These patients were followed up for an average of 14.5 months and included an assessment of prostate health via DRE and PSA, TTh response, hematological evaluation, and lipid profiles. Side effects encountered in this study included headaches in one patient, who subsequently ceased treatment as a result. The results of the study showed no recurrence of prostate cancer, defined as PSA levels >1.5 ng/mL, during follow-up. All patients reported improvements in hypogonadal symptoms. 4 reported decreased hot flushes, decreased fatigue, and increased libido, whereas 2 subjects reported improved erectile dysfunction.40 The authors concluded that men with testosterone deficiency syndrome after EBRT for localized prostate cancer are candidates for TTh. A retrospective study conducted by Davila et al assessed 6 men who received TTh after EBRT.19 The mean Gleason's score was 5. Testosterone and PSA values were measured both before and after treatment. The team found that TTh (administered by injection or transdermal gel) was effective in improving hypogonadal symptoms. 89% of the subjects elected to remain on TTh indefinitely. In addition, no significant differences were found between pre-and post-PSA levels.

Many studies published in the last 15 years demonstrate the safety of TTh in patients previously treated with localized definitive therapy for prostate cancer, and it is important to acknowledge that close follow-up may be important and is recommended by both the EAU and the AUA.
Both guidelines suggest that follow-up be offered at 3, 6, and 12 months after the onset of treatment and every 6-12 months thereafter.39,41 In addition, both organizations recommend monitoring hematocrit and performing DREs, with PSA monitoring also recommended by the EAU.41




CONCLUSION

Available evidence suggests that administration of TTh for the treatment of testosterone deficiency appears to be safe in patients previously treated with definitive local therapy for prostate cancer. This review validates this finding in patients treated either with surgical therapy or single or multimodal radiotherapy. Owing to the limited availability of randomized controlled trials, clinicians should remain vigilant when selecting appropriate patients to administer TTh in secondary hypogonadal men with a history of prostate cancer.
 

madman

Super Moderator
post #5

Screenshot (6229).png
 

fmowry

New Member
I had prostate cancer treatment in November. Tulsa-pro at Hopkins.

I found a progressive doc in Texas who was doing telemed and covered by insurance. I am in Maryland. Problem is the telemed service was due to Covid and unless stuff changes with the Delta variant he is no longer permitted to do out of state telemed unless I establish a face to face relationship. I might just fly there and do it.

It's not only finding a progressive doc but finding one who understands a proper TRT protocol (not 1 shot of 100mg every 2 weeks).
 

madman

Super Moderator
I was under ADT - Androgen Depravation Therapy or Chemical Castration. It is common to suppress testosterone in conjunction with radiation or surgery for prostate cancer. That was nearly a year ago but it is now only 21. I have read that once under TRT for several years, the body will often not produce T again.

 

madman

Super Moderator
post #12

PCa

*There is no evidence of increased PCa risk in men on TTh


*Recent evidence fails to support the longstanding fear that T therapy will increase prostate cancer risk or cause rapid growth of occult cancer

*The relationship between testosterone and prostate cancer appears to follow a saturation curve, present in many biological systems, in which growth corresponds with a concentration of a key nutrient until a concentration is reached in which an excess of the nutrient is achieved (Figure 2). Clinical data indicate the saturation point for serum T is approximately 250 ng/dL (8.68 nmol/L)

*There is no evidence that TTh will convert sub-clinical prostatic lesions to clinically detectable PCa

*Nonetheless, in the absence of large-scale, long-term controlled studies, it is impossible to definitively assert the safety of TTh with regard to PCa.

*Therefore, prior to starting TTh, a patient’s risk of PCa must be assessed using, at a minimum measurement of serum prostate-specific antigen (PSA). Pretreatment assessment should include PCa risk predictors such as age, family history of PCa, and ethnicity/race. If suspicion of PCa exists, it may be reasonable to perform a prostate biopsy if warranted by clinical presentation. Testosterone therapy may be initiated in these men if a prostate biopsy is negative

*After initiation of TTh, patients should be monitored for prostate disease with measurement of serum PSA at 3–6 months, 12 months, and at least annually thereafter. In a subject with an increased risk of PCa urologist supervision is required

*An initial increase of prostate-specific antigen (PSA) and prostate volume with TTh is frequently seen over the first 2–6 months because the prostate is an androgen-dependent organ. The increase in PSA will be greatest in men with marked TD and least (or absent) in men with milder degrees of TD. The PSA level at 6 months after initiation of TTh should be used as the new baseline

*Referral to a urologist for prostate evaluation and possible biopsy during TTh should be made with the development of a new palpable prostate abnormality on DRE or with a worrisome rise in PSA. Recommendations regarding what constitutes a concerning rise in PSA include an increase of 1.0 ng/ml over baseline PSA or a PSA velocity greater than 0.35 ng/ml per year.
 

D0UG

Member
I owe the forum an update on my situation. The urologist did finally come around on testosterone replacement therapy and I have been back on testosterone cypionate since Sept 29 and feel much better. On Nov 11, the blood test bfor my anny physical exam measured my PSA increased from unmeasurable to 0.2 and testosterone at 994 ng/dL. The urologist hasn't seen that test yet. Looks like the PCP tested only total testosterone level. I have noticed some swellling in my hands and feet. What are your thoughts of switching to testosterone enanthate? Its is over twice the price at Amazon pharmacy but worth it if it helps with the swelling.
 

D0UG

Member
Thank you. I did immediately lower the dosage but the swelling hasn't changed. I had some swelling before I went back on TRT but I don't know why. I just thought that changing the type of testosterone may help.
 
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