Hormone Therapy & Side Effects For High-Risk (Gleason 8)

[@jim7060]

As someone who has personally experienced the challenges of hormone therapy, I understand how difficult and overwhelming it can be. Despite the hardships, I remained hopeful and continued to fight my battle against prostate cancer, ultimately undergoing nine weeks of proton laser therapy. I'm thrilled to report that I'm now cancer-free. To those currently facing the struggles of hormone therapy or any other aspect of prostate cancer treatment, know that you are not alone. Stay strong, stay hopeful, and don't be afraid to reach out for support. Remember that there is light at the end of the tunnel, and your journey towards recovery may have its ups and downs, but with perseverance and determination, you can overcome the challenges and look forward to a brighter future."

[@Prog-t9d]

True indeed. But also living and existing are two different things. Hormone therapy for some can rob them of who they are. Depression, mood swings, anxiety, exhaustion. Not for me.

[@robwells230]

​@@Prog-t9d Well said. We need to hear the truth that we only get from patients, and not sales propaganda from doctors

[@GeraldMarnon-r4f]

@@Prog-t9d SAME HERE

[@pgh3657]

PSA of 28, High Risk diagnosed early 2023. Thirteen months into ADT and it sucks. 12 months post radiation. I thought the hot flashes, extreme fatigue, diarrhea, chills were going to kill me. Then in Dec 2023 the radiation proctitis developed in my colon causing serious blood loss. I've had two flex sig procedures since then to burn/seal the blood vessels and ulcers but continue to bleed. Recent labs show I'm finally producing more blood than I'm losing but only by a little. Going to see a colorectal surgeon in a couple of weeks to see what they can do. Prior to treatment I was told about the possibility of side effects but they were downplayed by the doctors saying only a small percent of patients suffer from them and because of my relatively young age I would probably be fine. I'm posting this so everyone can know that the side effects can happen to anyone and do not let the doctor's downplay them. Ask questions and do your research. Good luck!

[@robwells230]

Thanks for speaking up. I was coerced, deceived, intimidated and extorted into one Eligard shot that was supposed to be a six month shot. It still has my T level far below normal even after two years. I was treated like a concentration camp inmate here at the CROSS CANCER INSTITUTE in Alberta. We need to join our voices and demand FULL DISCLOSURE so we can give FREE AND FULLY INFORMED CONSENT.

[@schmingusss]

@@robwells230 Aw man, this is depressing me :(

[@schmingusss]

Did they inject the protective gel between your colon and prostate to protect your colon from the radiation treatment?

[@pgh3657]

@@schmingusss I asked my Urologist about it and he said he didn't recommend it. I never asked the radiation doc about it. Maybe my Urologist was mad because I decided to do radiation instead of surgery.

[@andrewmeitner4818]

Prostate cancer sucks no matter how it’s treated (unfortunately I know this personally)

[@Neworldisordered]

Gleeson 8, very large tumour, no metastasis on PET scan. Rejected ADT and so glad I did. I'm 68 and workout w heavy weights, mountain bike and do multi day canoe trips w portages.

[@DeathSentryCoH]

wow, .. i am considering rejecting as well..scary

[@robcotter5474]

So what sort of treatment are you considering?

[@gumbycat5226]

Dr Schultz is just brilliant. I was suicidal when surgery was the only option presented to me but I realized that there was a chance to save my physical and sexual self by radiation when I started listening to him. (Grade 5 prostate cancer, Gleeson 9, age 66, PSMA scan shows no metastasis.) I was always fit and slim but my serious depression led to me losing 10kgs (22lbs) so I am now only 136lbs (and have been for the past 9 months) despite being 6 feet tall. But I added rigorous strength and resistance training to my usual cardio and upped the cardio by adding a force march component of between 15 and 30kms every day so that my bowel would be completely clear and flexible for the radiation (you also need your bladder full, to push the bowel out of the way). I also opted for many radiation sessions (39) with low fractionation so as to reduce radiation side effects, and installed the spacer gel to protect my rectum. That was 8 weeks of radiation every day Monday to Friday, except for 4 in the first week. It was highly stressful but by the end of the 6th week I realized that the only effect of the radiation was 3 days of tiredness, diarrhea since the middle of the second week and some pain when urinating. The diarrhea went away completely 10 days after radiation and 2 weeks later, the only sign is that I have some slight pain when urinating. I am taking a muscle relaxant as well as a cranberry concoction that turns urine from acid to alcaline. The whole ordeal has been much, much less onerous than a bad cold. The most stressful part was the force marches (with diarrhea) and actual sessions - every week one of them was more complicated despite all my prep, because they have to align the daily CT scan with the planning CT scan to get today's remarkable accuracy and reduction in ancillary harm. I am also on ADT, begnun 4 months before radiation. Again, the only noticeable thing was loss of libido although I was still able to fully get there - I just couldn't be bothered most of the time. I am one of those men Dr Schultz talks about - I feel much better now than even before, because, for the first time in my life, my upper body is strong - really strong - and I have well-defined muscles. You see those scans of men who are on ADT and don't do what I have done - massive gain in visceral fat, muscle and bone loss in the 80% range or higher, that can never be recovered. You can avoid all that. Also, exercise naturally creates a positive disposition and I have been positive throughout except for my first 3 months of depression. I did start with another advantage. There are 4 things that work to support prostate cancer - being overweight, being unfit, smoking and drinking alcohol. Throughout my life none of this applied. So I focused on the positive things. The instant I got my diagnosis I switched to strict vegan - this had a major positive impact for me in addition to the cancer benefits because I had never realized the extent to which milk was messing with my body - and no sugar or corn syrup (because it promotes inflammation) and taking tumeric with black pepper (to activate it) - tumeric is effective in reducing inflammation which both helps radiation and impedes cancer. I also had my gut bacteria checked and my immune system was luckily top notch.

[@robwells230]

@@gumbycat5226 Wow...on ADT with only loss of libido???? You are one lucky dude.

[@markturner3290]

@@gumbycat5226 nearly the same as me mate. Im 60. 13 months in on ADT and 40 external beams. Only , gel spacer was not an option. Grade 5 gleason 9

[@mek2024-w3m]

I’m from Brazil. Age 61. Gleason 9. Surgery 3 weeks ago. Planning to Start radioterapy in 3 months + 3 years of hormone therapy. It will be a long battle !! I’m catholic with a huge faith in God !

[@robwells230]

@@mek2024-w3m Please educate yourself on the horrific quality of life destroying and life shortening side effects of this cruel and barbaric ADT CASTRATION so you will know what to expect and be better prepared to deal with them. And be aware that your testosterone level will likely remain low for years after and probably forever. It will be a very rough road and you need to be forewarned. Your partner needs to know the side effects also. ADT CASTRATION destroys not only your quality of life, but also destroys relationships. Wishing you the best

[@johnnydee6659]

I was gleason 8, 6 of 12 cores positive, grade group four. Prolaris test high/very high. My RO wanted me to do 24 months of ADT after 45 IMRT radiation treatments. After 12 months of Orgovyx I said enough. I was working out every morning and walking a few miles but continued to lose muscle mass. The joint pain was getting unbearable. I changed diet and actually lost weight while on ADT but didn't think I'd make 24 months. That is old school. Almost at two years since ending ADT and PSA has been .04. I will credit Orgovyx, my testosterone was over 200 after 90 days and over 400 in 180 days so their instant off and on claim was true for me.

[@AlanEllis-v5o]

I've suffered extreme tiredness and hot flushes ever since starting Hormone therapy 18 months ago. this has impacted greatly on my quality of life, sometimes I regretting ever agreeing to it. However my PSA level is now down to 0.04 and was looking forward to getting my life back, before suffering a Heart attack and undergoing Angioplasty. Oh well, onwards and upwards.

[@simondumoulin2254]

For the hot flashes, try Pristiq (venlafaxine). 50mg in the morning and 50mg in late afternoon. Thank me later...

[@robwells230]

Congratulations..you deserve a medal for suffering through ADT that long. Best wishes

[@Prog-t9d]

Quality of life after I got my first Lupron shot was decline. Fatigue, mood swings, how flash, frequency of restroom breaks. No thanks. Not again. The mental fog was the worst.

[@bridudrum]

@@robwells230 I did ADT 24 months Goserilne , brachytherapy 22 sites, external radiation 15 ties. Finished all hormone implants 13 months ago. Side affects have been horrendous as we all know. I expected the side affects to end shortly after treatment ended. But NO, I still have hot flushes, crazy thoughts and moods, exhaustion and a set of breasts. I sweat all night and wear incontience underwear daily. Testosterone ? I feel a little coming. I saw a pretty girl yesterday. I thought “Oh what a pretty girl “ I laughed for the next 10 km, a little libido seeping through.

[@9cyrus540]

I'm 66 with G8, did 28 treatments of IMRT (last November) plus Lupron, 10 months in, my PSA two days ago was 0.01. Shooting for 18 months total, so far, so good. No spread, going to the gym 2-4 a week. I have gained weight, and that is my biggest concern right now. Love these videos!! Bless Dr. Scholz!

[@robwells230]

@@9cyrus540 I was warned that I would gain weight after being coerced into one six month shot of Eligard ADT CASTRATION, Then, after two months started 25 fractions of 68 Grey IMRT. As soon as e completed my radiation therapy, I flew to Mexico for the winter. I stopped drinking any Pop or beer, just slightly reduced my meal sizes, and substituted lunch for just a field cucumber. I didn't find it hard to change my eating habits, and I ended up loosing 40 pounds. At first, I thought that something was seriously wrong having lost that much over 6 months, but it was all good. My PSA dropped from the 42 at diagnosis to.6 at the end of RT, to .3 a month later, to .008, to .006 to ZERO as the months passed. I got my PSA tested every month in Mexico for less than C$10 each test. It was reassuring to watch it drop. I'm 77 today, and my weight dropped from 210 lb to 170. Now, I'm holding at 188 two years later. I found that I used to eat often out of boredom, so it was important for me to keep occupied. I did a little exercise, but nothing excessive. The ADT did cause severe fatigue, muscle loss, complete loss of libido, hot flashes, but the worst was severe brain fog and memory loss that made multitasking impossible and driving hazardous. So, I refused further ELIGARD, and, instead, bought generic Bicaludamide Casodex over the counter cheap in Mexico and took it for a year instead of Eligard. My dictator doctor at the CROSS CANCER INSTITUTE was pissed off that I refused her two years of ADT CASTRATION, but I believe that shit would have killed me faster than my Gleason 3 plus 4 percent Gleason 4 cancer. The ADT put me up to prediabetes level HgA1c tests, but my liver tests remain normal. Best wishes for maintaining some quality of life on ADT, for weight control, and for a cure

[@leeclinkscales2584]

About those side effects, mental and emotional issues should be included. Having no libido is no fun, but many of us find ourselves on an emotional roller coaster. Without testosterone, most are less aggressive, but how one feels about one's masculinity can be a major issue. Some of us cry very easily. While the above are testosterone related, I have noticed one fairly well known side effect; brain fog. I my case, I occasionally fail to put words in the proper order when speaking. Also, after being on it for 15 months, one effect I think is a direct effect of Abiraterone (Zytiga) is a loss of equilibrium. I'm not dizzy, I just can't balance without three points of contact. I'm now taking half the dose, and saw immediate improvement. Finally, please don't dismiss hot flashes as minor until you have experienced dozens of them a day. Thank you for all the videos.

[@Prog-t9d]

I got one injection and will not get another. Hot flashes, fatigue, mood swings. Major decline of quality of life.

[@robwells230]

​@@Prog-t9d Doctors are lying to us and coerce, deceive, extort and intimidate men into ADT CASTRATION without full disclosure about ALL the horrific quality of life destroying and life shortening side effects. They never warn about the severe brain fog, early dementia, and premature frailty, or that ADT actually reduces overall survival by two years. But then, big pharma make billions peddling these outrageously expensive toxins

[@markturner3290]

@@leeclinkscales2584 love all you guys man, my brother's. With the ADT, im actually glad my dick doesnt rule my brain anymore!🤣

[@GeraldMarnon-r4f]

@@Prog-t9d so so true

[@Prog-t9d]

Agree. I had one treatment of Lupron was a six month dose. I am in remission now but will not continue with hormone therapy. I was not myself, fatigue, bone aches, brain fog, hot flashes.

[@roberthuff3122]

🎯 Key points for quick navigation: 00:00:00 *🎯 Overview of Hormone Therapy for High-Risk Prostate Cancer* - Discussion on hormone therapy for Gleason 8 prostate cancer. - Introduction to Dr. Mark Scholz, a medical oncologist specializing in prostate cancer. - Importance of Gleason score and PSMA scans for high-risk patients. 00:01:10 *🔬 Advancements in PSMA PET Scans* - Improvement in cancer detection with PSMA PET scans. - Re-evaluation of high-risk classifications based on these scans. - Enhanced precision in identifying prostate cancer spread. 00:02:59 *💉 Hormone Therapy Treatment Duration and Adjustments* - Historical approach of 18-24 months hormone therapy. - Consideration for shorter therapy based on scan results. - Potential reduction in treatment duration due to updated clinical trials. 00:04:46 *📊 Factors Influencing Hormone Therapy* - Impact of tumor size on metastasis risk. - Importance of monitoring PSA levels post-treatment. - Technological advancements in detecting early metastatic relapses. 00:06:36 *🏥 Accessibility and Coverage of PSMA PET Scans* - Medicare and insurance coverage updates for PSMA PET scans. - Comparison between first and second-generation hormone therapies. - Potential benefits of adding second-generation agents for enhanced treatment efficacy. 00:08:53 *💪 Managing Side Effects of Hormone Therapy* - Common side effects of hormone therapy and their mitigation. - Importance of resistance training to counteract muscle loss. - Strategies to address fatigue, libido changes, and weight gain. 00:11:10 *📈 PSA Monitoring and Implications* - Monitoring PSA levels to evaluate treatment success. - Significance of achieving specific PSA thresholds. - Considerations for further treatment based on PSA results. 00:13:53 *📆 Recovery Timeline and Age Considerations* - Recovery times for testosterone levels post-treatment. - Influence of patient age on recovery and treatment decisions. - Balancing life expectancy with treatment burdens and side effects. 00:16:43 *📚 Importance of Awareness and Research on Side Effects* - The necessity of understanding hormone therapy side effects. - Encouragement to develop a side effect management plan. - Importance of involving medical support for informed decision-making. Made with HARPA AI

[@michaelh2716]

Dr Schultz, I completed my Radiation Therapy (42 treatments of 5 days/wk) approximately 3 mths ago. I first started on Relugolix in Sept ‘23 for 2 mths. Then switched to Eligard injections due to cost. My first blood test show “undetectable” PSA & testosterone after 4 mths. My initial PSA was 4.08 Gleason 8 and my PET/CAT Scan showed High Risk Cancer with NO METS! Yea! I’m hoping that by Dec ‘24 my physician will stop the Hormonal Therapy. I have no Sexual interest with my wife of 50 yrs and my lack of stamina is profound! Actually my wife & I are” closer” since the hormone therapy was started! But I’ve made up my mind to ignore the weakness and force myself and do my yard work & gym work outs! I’m 70 and I work out at a gym 2-3 times a week. And ride an Electric Bike once a week. My blood glucose has been elevated. And I’m a Type II Diabetic.

[@user-qj2wb7ne4e]

I have a similar diagnosis. At 80 and in good heath and on Lupron for six months at the recommendation of my urologist. . My urologist and Rt oncologist are at odds about the continuation of ADT for 24 months. I’m in agreement with Dr.Scholtz about over prescribing ADT in certain cases. 28 Hyprofraction RT’s and 6 months ADT will be evaluated to determine their effectiveness post treatment. Being armed with expert opinions and facts will help me determine the future course of treatment.

[@daleval2182]

Please add keto, when you said you ignore the urge to keep sitting and do yard work, you're a fighter, I just got my bad cancer notice, I'm going to fast, stop my blood sugar supper low, I reversed my Type 2, now I plan to beat prostate cancer, keep exercising, keep walking , I'm also going to take Fenbenzadole

[@daleval2182]

​@@user-qj2wb7ne4e I'm going to skip the treatment

[@michaelh2716]

@@daleval2182 Thank You for the advice and information!

[@colemant6845]

This is My Situation EXACTLY... except only a 3+3 Gleason 12 years ago... and decided on HDR treatment. Now... 12 years later my PSA is climbing (@5.28) and my doctors CANNOT find where the lesion is. PSMA indicated a single lymph node spread. After 2 BENIGN biopsies (1 lymph node and 1 prostate) a Fusion Guided Prostate Biopsy is scheduled for next week. The miserable process continues. PCRI.... THANK YOU!

[@bestaircraftdeal]

Get a psma pet scan and it will show you where the potential new tumor is located , that's what I did when my PSA started climbing again after I was in complete remisión. Now I ow I have a new tumor in the prostate and can treat it directly. Theranostics is brand new and check it out thats less side effects than anything else. Good luck.

[@ericrupert2687]

Not all prostate cancers are PSMA sensitive. Possibly a different scanning agent will reveal it

[@colemant6845]

@@ericrupert2687 This is New Info to me... what other scanning agents are available??

[@andreasboueke9468]

I am a big fan of this channel, ever since in May 2023 I was diagnosed with 44 PSA and Gleason 8. I decided on Protontherapy here in Germany (WPE in the city of Essen). Went very well. I did nine months of Lupron, lots of side affect, but I think I handeled them well. Then I stopped, because I had a lung emboly that almost killed me. I was told that the cause posibly was Lupron. Now I take medicine for my blood (Xeralto) which results in very much blood when I go to the toilet. That's how I found out that the radiation did hurt my colon. Too bad. But dispite all this, several urologists tell me I should go through longer hormontherapy (here in Germany they advise 24 months) , considering my "young" age, 55, and the high risk tumor I had. I am not sure yet what I will do, but I do apreciate all the advice I get in these videos.

[@brockjennings]

Thank you for posting as I fall into specific scenario being discussed. I was a couple of weeks away from a radical prostatectomy as recommend by my urologist when I decided to consult a radiation oncologist for another opinion. He concurred on the recommendation of surgery, but advocated for six-months of ADT beforehand. The oncologist feels this will improve surgical margins and overall better long-term outcome.

[@monetizepresentknowledge5621]

What is your PSA and Gleason score? Did you have a PSMA-PET scan and MRI targeted biopsy before the decision for surgery was made?

[@brockjennings]

​@@monetizepresentknowledge5621 PSA was 18, 6 of 9 cores had cancer with the worst being a Gleason 4+4. Bone scan, Pelvic MRI, and PMSA PET Scan indicates no spread outside the prostate.

[@tardisbob2745]

Another excellent video. This is a very complex area where individual experiences vary considerably. Based on my own experience, one of the first steps that should be taken where a patient is categorised as “high risk” is to try to pinpoint the reason for their high Gleason score and any metastatic activity. That should involve genomic testing. In a significant number of cases, the root cause of a more aggressive cancer and an accompanying high or accelerating PSA is a gene mutation such as BRCA1 or 2 or ATM. The presence of such a mutation upends much of the logic of treating patients with the primary goal preserving their sex drive. A gene mutation generally is a reason for intensifying treatment and for closer and more regular monitoring. It also brings a different range of drugs into play. Also from personal experience, lifestyle changes - even modest ones - can make a huge difference in how well first and second generation drugs are tolerated.

[@manigaur8973]

Thanks for continuing to educate Prostate Cancer patients like me through your videos. These are most wonderful. Can you please do a video and talk about how long it takes for PSMA PET SUV max scores to come down in primary prostate cancer site and the metastatic sites after PSA has reduced below 0.1 following Lupron and Xtandi hormone treatment. Also can you help us understand how the SUV Max score in FDG PET scan can be very different from PSMA PET Scan. Thanks again for all you are doing at PCRI. Very Grateful.

[@ovidididaho]

I was diagnosed at age 63 on February 20 this year. My prostate was basically a tumor and spread throughout my pelvis and right hip. Started cosadex did psma-pet scan then biopsy from bone no biopsy of prostate. Got on Eligard and was approved for Nubeqa right away. I had 20 external beam radiation treatments over the course of one month to prostate and bone, three weeks later I started chemotherapy docataxel 168 now going on my fourth treatment on the 23 of this month, psa from 155 to 1.2, the pain in my pelvis and hip is nothing like it was. My plan seems to be working well. The side effects have been minimal so far, no nausea no diarrhea. No weight loss, no weight gain and my appetite is out of control and I have to watch it, I'm really hungry since starting chemo. For me the hormone therapy is the hardest to take although I have not lost my sex drive completely and use no other drugs or pain killers. Unusual for sure. 💙

[@fredcisneros]

I am on hormone therapy for 16 months now. Since then my stamina has been slowly reducing; I'm forgetting things; I used to walk 2-3 miles atleast 5 days a week. my primary provider 😅then prescribed dutesteride on my bph. 15 years. I am 87 years old now.😢😮😢

[@fredcisneros]

I am on Lupron and Casodex.

[@oscarsalazar8693]

This is oscar 77yrs just wanted to add my glesson score was 4+4(8),I have also enjoyed listening to your enlightening comments and suggestionthanks again

[@ThePCRI]

Thank you Oscar, we appreciate the kind words!

[@johng8082]

So interesting to watch and to read of the different experiences with hormone therapy. Gleeson 8 PSA 22 T3aN1M1 December 2018. Now 74 yrs, retired from “active” service many yrs ago. Have been on hormone therapy since beginning 2019 starting Qtly and last couple of yrs 6 mthly Injections. If the PSA is down I don’t have any Inj. until it rises above abt 2. So been having this type of treatment for abt 5 years now. Nightly hot flushes sometimes 3-4 times per night. We won’t mention the nightly loo breaks please. Otherwise Im happy waking up each day and put up with the inconveniences brought on by the treatment.

[@simondumoulin2254]

For the hot flushes :50mg of Pristiq (venlafaxine) in the morning and another 50mg in late afternoon. Thank me later...

[@robwells230]

That medication did nothing to reduce my hot flashes, but it certainly inhibited orgasms...one poison to try to mitigate the harm of another poison.. It never ends

[@nelsonoliva2119]

Fantastic thank you, Please @pcri can you please do a segment on decipher testing and how these genetic tests can help with deciding on future treatments? Thank you

[@morphwien]

I had RT and got mild radiation proctitis 18 months later. Using Salofalk suppositories (Active Ingredient: mesalazine) first every day, then moving to once a week, has been sufficient to keep it fully under control. I also had ADT for six months and had the usual side effects plus a painfully infected tendon below my knee and then a rash over my chest and arms. All disappeared after the ADT wore off.

[@edbarton-rz9cs]

Thank you for another great educational video Your videos are factual and calming …….. I had my prostate cancer return in 2022 ………PSMA scan showed metastasis to T10-L1-righ 2nd Rib -all small to moderate I was restarted on Lupron and XTANDI The side effects have reduced my QOL ………..FATIGUE, MUSCLE LOSS and DEPRESSION is SUBSTANTIAL ………… but at age 64 in 2024 - my PSA on these for mentioned medications PSA has been UNDETECTABLE …..Exercise is the only thing that helps manage the depression and fatigue side effects The sword cuts both ways Cancer is under control vs QOL side effects = I choose Cancer control and manage the Side effects Thank you again for you videos

[@MrOBalert]

@edbarton-rz9cs Hi, How well does exercise manage the muscle lost? Is it a situation where exercise slows it, or stops the loss completely? Is there ever going to be an opportunity to rebuild loss muscle or strength? What are you longer term expectations now (thank God) the PSA points to control of the cancer. Hope you are not offended by my questions.

[@jim7060]

Navigating the daily challenges of hormone therapy can be incredibly difficult. It's a grueling process that can sap the energy and strength right out of you, making even the simplest tasks seem insurmountable. I understand how disheartening it can be when progress feels slow or non-existent, but it's essential to keep pushing forward. Remember, you're not alone in this struggle. There are others who are going through the same journey, and we can lean on each other for support. Keep trying to stay active, even if it's just a short walk or gentle stretching. Every little bit helps, and it's important to celebrate even the smallest victories. You are stronger than you think, and your resilience will carry you through this challenging time. Keep your eyes on the prize-a cancer-free future-and know that with perseverance, you can overcome this."

[@GeraldMarnon-r4f]

@@jim7060 THE OLDER YOU GET FOR MANY THE TOUGHER JT GETS.

[@beegood]

I’m 5 months into ADT, and have a small fan for hot flashes. They come and go, so I have to turn the fan back off too. I get chills after hot flashes. It’s the radiation side effects that are more unpleasant. Urination blockage, diarrhea, extreme fatigue, and nausea. I’m down to 7 days of radiation sessions, then on to rest and recovery after a 2-3 month peak. Yay!

[@robwells230]

Tighten your seat belt, the rough ride is just beginning. It takes a few months for the real horrific side effects of ADT to set in. Testosterone actually doubles for the first month so you can be fooled into thinking this isn't so bad. But after five or six months, the hammer drops. Look out for Severe mood swings, serious brain fog, dementia, depression, extreme fatigue and muscle loss, frailty, permanent penile atrophy and a long list of debilitating effects that may make life hardly worth living. Do not believe the big pharma sales propaganda that these effects are temporarily as up to twenty percent of older men NEVER RECOVER ABOVE CASTRATE LEVEL. Know all that you are getting into before you decide how long you will allow this cruel and barbaric treatment to continue.

[@paulrobinson2125]

I stopped after 12 months as the adverse effects were really not worth it and studies showed 18 months was as good as 3 years …

[@robwells230]

​@@paulrobinson2125 You deserve a medal for suffering through one year of ADT CASTRATION I refused any further ELIGARD ADT after the first six month expired due to the horrific insufferable side effects. Now, almost two years after starting treatment of ADT and 25 fractions of 68 Grey IMRT, but my testosterone level still remains less than half of lower level of normal with kitty hope of ever recovering. ADT CASTRATION is cruel and barbaric treatment with lifelong side effects

[@beegood]

I went in for my 6 month injection on the 6th of September. Started Bicalutamide (Casodex) in February 2024. Doing better much, but taking alternative medication for hot flashes, cold sweats, and osteoporosis. Haven’t got to the stage of Mood swings, brain fog, dementia, depression, fatigue, muscle loss, frailty, penile atrophy yet, but at 77, I’m currently feeling pretty good.

[@Spinonemaster]

I agree ... these Dr's need to do a much more thorough job on disclosing these side effects vs long term efficacy ... mine pushed 18 mo's where I knew many at same grade who only did 6 mo's during radiation ... he was not happy when I skipped the 3rd shot .... then tried to guilt trip me and said I was risking having the cancer coming back .... I'd just read that new study that shows I'd get maybe and extra 2 months 15 years out, he dismissed that data ... my insurance covered it, but they'd get another 3 grand and I'd end up even more tired, more muscle loss, more helpless, etc... I'll note I drove to apt's/treatments in a 24 year old Jeep ... Dr drives a $125,000 dollar BMW ... so I'm glad for this channel and glad I dug deep into the latest data ... I opted for a better quality of life for what I have left (68 yrs old, robustly healthy before P-Cancer)

[@GeraldMarnon-r4f]

SPOT ON❤❤❤

[@daveh5605]

I'm greatful to have found this info early ( 2023 ) in this adventure , when my Urologist did the cores (12 of 12) he put me on Eligard for 36 months so I ask him "what can I expect from this" , all I got was " you will lose some hair". Yes you got that right , now that I'm armed with so much good information from PCRI , I'm able to speak up and ask the important questions. After 12 months of ADT and radiation I feel like I.m playing on a level playing ground with my team. PSA check ( last was .02 ) and 3rd Eligard shot in July. Hopefully I'm still doing well and still in this thing. I want to thank DR. Scholz , Alex and PCRI for being there for me through all this.

[@robwells230]

I hope the Eligard doesn't give you the severe brain fog, depression and mood swings that it gave me. It's time we demanded full disclosure about ALL the side effects of ADT, not just big pharma sales propaganda. It's easier to ride out the side effects when we know what to expect before hand, and when the decision on ADT treatment has been made with our FREE AND FULLY INFORMED CONSENT. Good luck on your journey. You are not alone.

[@daveh5605]

@@robwells230 I have alot of those but I think it's mostly because I'm alone and left to dwelling on these things. for me. it's fatigue so far. ( it's ridiculous )

[@pgh3657]

@@robwells230 I almost forgot about the brain fog and the mood swings. And speaking of mood swings they always seem to be from mad to sad and back. Never have swung to the happy side.

[@colinwilliams9758]

My PSA drop 0.12 my prostate spread to my left about 9 matastes in 1 area I'm am harmone therapy abreteron and prestone why can I have reduction my doctor said no because of multiple mataste

[@Terryhirst]

I have stage T3A. I had 3 of 12 cores positive in one area 3+4, 4+3, 4+4. PSMA Pet scan showed no spread. MRI showed potential capsular penetration. My last PSA was 7 and volume is 25cc. They want to do 18 months of hormonal therapy with 25 treatments of radiation. This seems excessive. I understand the mitigation of risk but this seems like a significant price to pay. Urination and other functions are normal. Should I demand no or shorter treatments?

[@thomasflynt1764]

I'm just over a month shy of 58 and I've been on the first of two scheduled 3 month Lupron shots for 5 weeks and will be starting radiation soon for 5/12 positive 4+3 cores which is still localized in my prostate. So far, the hot flashes have not been bothersome at all as I'm usually hot all the time anyway. Really, the only way I can tell when I have them is because of the sensation of sweating from every pore of my body for about 5 minutes. As far as fatigue goes, I don't feel tired at all. Instead I feel sleepy all of the time but popping a 5 hour energy just after lunch at work on the days I work out seems to help a lot. My sex drive is lower but everything down there still works just fine. If my side effects do not get any worse than this, I will not try to get out of the 2nd 3 month shot coming up in August.

[@Prog-t9d]

Some effects take time . After radiation and one shot of Lupron I was exhausted, moody, pee a lot so never good night sleep. Good luck.

[@bridudrum]

@@Prog-t9d I finished Goserelin ADT, 13 months ago. The side affects increased dramatically for the next 12 months, beginning to lessen now but mood swing horrendous.

[@drno8561]

As always very informative as well as empathetic, thank-you

[@simondumoulin2254]

For the hot flashes, I have been taking 50mg of Pristiq (venlafaxine) in the morning and another 50mg in late afternoon. That reduced the hot flashes by about 75%. I am sleeping much better also!

[@roboodonnell3224]

Thank you folks!

[@121AHC-mt7hj]

My hematologist talked me into one 3 month shot because I had a DVT. He said it would help clear it. Then he scheduled me for 1 shot every three months. He flat out lied to me. My Gleason score is 6 and my PSA is 6. He did this, while I was being treated for a DVT. Hormone injections cause DVT's. 84 % of people who take hormone therapy for prostate cancer get DVT's. I found another doctor. My cancer is Active surveillance.

[@robwells230]

What is DVT????

[@121AHC-mt7hj]

@@robwells230 Blood clot

[@ReachTim]

I'm 67 with PSA of 12 and Gleason score of 7 (4+3). There are lesions on the right side of my prostate and I've been informed that I also have an EPE (extraprostatic extension), but it has not yet metastasized. I'm to begin ADT hormone therapy on 18 July this year and it is to last for a total of 6 months. In 2 months (approx Sept or Oct) I am to have HDR Brachytherapy to be followed by 5 SBRT treatments (cyber knife) every other day. Does this plan sound good? Is there anything I'm missing? Does this sound like too much...or not enough? Of course I'm concerned about the hormone therapy. My T-levels are already low and the pre-aging, muscle loss & decreased bone density really scars me. Or maybe I'll be okay since it's only 6 months? Any info would be greatly appreciated. Thanks for the informative video.

[@markshaw1966]

How about Zoladex?

[@crouss28]

Can someone answer, how do patients already hypogonadal fit into this? Thanks

[@matthewcabell4902]

Gleason 8, PSA 5.5, PSMA pet scan shows a very small lesion on a pelvic lymph node. Tri-modal therapy with brachytherapy and IMRT, plus ADT. Would Dr. Scholz agree that 12 months of ADT is sufficient even with the lymph node involvement?

[@suewanner395]

I have been watching many of your videos and it helped me a lot. I have been on a long road after learning Gleason of 7 and 8 and PSA of 149 with BRCA 2. I got the PSMA scan within 3 months and started on ADT. The scan showed Prostrate and bone involvement. I did lupron and Zytiga for 2 years and stopped taking the drugs R/T the side effects. My PSA was 0.06 for a year. I had intense testicle pain, hypertension, migraine headache for 8 months and became very weepy possibly R/t the prednisone . I stopped in late Feb. and the side effects have stopped. I took the zytiga and prednisone every other day for the last week.. I searched and couldn't find any information on how to get off the meds properly.

[@corgiowner436]

I did six months of Orgovyx for Gleason 4+3 along with radiation. I was suicidal while on it and despite discontinuing it 18 months ago I am still suffering from psychological issues. My testicles have never recovered to their normal size and now I need testosterone therapy. I would never do ADT again even if it worsens my prognosis.

[@billyjohnson9166]

I’d rather die before continuing hormone treatment . I got one shot that was enough. It was hell.

[@GeraldMarnon-r4f]

8 QUARTERLY LUPRON SHOTS. NEVER TOLD OF SIDE EFFECTS. DR.=$$$$$ HORRIBLE😢😢😢😢

[@corgiowner436]

@@GeraldMarnon-r4f that’s a real disservice. I doubt it’s about the money. More like routinely following the protocol with no thoughts of the consequences.

[@darylmcfarley9650]

I opted for Brachy Therapy and IMRT with no ADT, my PSA was 5.8 now it's at 0.827. I did not want to face the side effects associated with ADT.

[@JasonRoberts556]

How old are you? I’d love to have a conversation with you. I’m black, 42, 8mm lesion, Prostatitis, PSA 17.

[@robwells230]

If you ever find it necessary to go on ADT, make sure you get full disclosure about ALL the horrific side effects including the unpredictable long recovery and risk of permanent CASTRATION. Once you weigh all the factors, you can make YOUR decision, and it will be easier to ride out the effects. Best wishes on avoiding ADT.

[@JasonRoberts556]

@@robwells230 I’m not going on ADT if diagnosed. It doesn’t make much a difference & if it did, I still wouldn’t.

[@schmingusss]

@@JasonRoberts556 I'm thinking the same thing. I don't think I could handle all the side effects of ADT. This is so depressing. I took Propecia (Finasteride) for hair loss for ten years between the ages of 30 and 40. It gave me horrific panic attacks. I think this may have something to do with my high PSA score. What a dumb move that was.

[@JasonRoberts556]

@@schmingusss I honestly think this is about business. This is about pushing fear into men when most would live for a long time if nothing was done

[@maxstyle3286]

I am aged 66 . My PSA is 4.1 The MRI prostate w wo contrast RAD showed 4 and the biopsy report from 12 samples showed one RA , biopsy 3+3 and one RMPZ biopsy 4+3 . The bone scan showed no spread . Am i considered as Intermediate Risk Prostate Cancer ? Should i do Radiation therapy with or without hormone therapy ?

[@robwells230]

It is entirely YOUR DECISION, but beware that your doctor will obfuscate and minimize the horrific quality of life destroying and life shortening side effects of ADT CASTRATION and exaggerate the small, hoped for cure benefit. Ask your doctor if he has personally been on ADT CASTRATION for two years.. If he hasn't, then he only spews big pharma sales propaganda with all the integrity of a sleazy used car salesman. Get full disclosure so you can give FREE AND FULLY INFORMED CONSENT to any treatment. Best wishes for a complete cure

[@MonetizePresentKnowledge]

Thankfully, my situation is no longer serious but here's something to consider about hormone deprivation therapy. I had no idea the therapy would cause gynecomastia, aka man boobs. Had I been told earlier I would've had my ripples radiated. Now I'm going to need plastic surgery to remove excess tissue.

[@robwells230]

Exactly..I requested a low dose aromataze inhibitor like letrozole, but no doctor would prescribe it. Now I've got bitch tits on top of all the other horrific quality of life destroying side effects of this cruel and barbaric ADT CASTRATION. And the get pissed off when I complain that I've been treated like a concentration camp inmate after being Coerced, deceived, extorted and intimidated into a 45mg shot of Eligard that was supposed to be a six month shot. Yet, 18 months after that shit was supposed to expire, my testosterone remains barely above castrate level with all the association side effects that make my life not worth living. Here in Canada, it is easy to get a MAID (MEDICAL ASSISTANCE IN DYING) injection than to get a prescription for testosterone shots that would give me some semblance of a quality of life.

[@lrs7777]

Physical side effects are always mentioned. What needs to be discussed more are the cognitive & emotional side effects of hormone (and steroid ) therapy!!!!!!!

[@robwells230]

Yes, indeed. The drug makes and sellers like to obfuscate or minimize these horrific side effects. I found the brain fog and mood swings so severe that I refused ADT after the first six month shot expired.

[@gumbycat5226]

Agree. For me the brain fog was and remains a considerable issue. I stopped driving completely because I once tuned out on the road and got a speeding ticket - never happened before! I have lost my wallet 3 times on the train (never before) and lost my phone twice (never before). I am always forgetting why I am doing the thing I just started doing... I have got to the point where this is manageable although frustrating.

[@iaintoms7071]

You speak my mind - fro me the side effects are horrendous but for others they are horrendous. But I am learning from women that ifs like that for women at the menopause - for some it is horrendous and others it presents few serious side effects . But we all laugh as they say, “now you know what is like to be a woman!”. I was Gleason 9 with a PSA of 832 and metastasised when is was first diagnosed and there is little alternative

[@iaintoms7071]

Sorry second “horrendous” should be “little problem” - you can put that down to the meds!

[@GeraldMarnon-r4f]

SIDE EFFECTS "NEVER" MENTIONED BY LUPRON DOCTOR. CRIMINAL. HAD TO DO MY OWN RESEARCH. BUT WAs too late. GOING THRU HELL. MD = $$$$$$$$$ FOR LUPRON SHOTS.😢😢😢😢😢

[@陈声]

I just had the robotic prostatectomy .After six weeks my PSA is 1.0 Am I have to follow with hormone therapy?.What will the side effects caused ?

[@gumbycat5226]

I am not a doctor but this is much higher than it should be and suggests metastasis. My advice is to let the experts guide your next round of treatments. If you haven't had a PSMA PET scan I think you should get this done. Experts may say that the PSMA scan should not happen immediately because it can't pick up lesions less than approx 2mm in width, so you may have to wait a little bit.

[@judithhall9643]

I think your PSA is too low for PSMA scanner currently but ask anyway - do 3 monthly PSA tests. My husband showing PSA post op then doubled and doubled again indicating was on going. Did radiation PSA now >0.008 last three tests (undetectable).

[@robwells230]

Studies show that after 18 months or more of ADT CASTRATION, 75 percent of ALL MEN WILL NOT RECOVER THEIR TESTOSTERONE LEVELS EVEN AFTER A MEDIAN TIME OF FIVE YEARS. Please have the integrity to inform patients about the very long and unpredictable recovery time after ADT. This information is essential before patients can give FREE AND FULLY INFORMED CONSENT.

[@GeraldMarnon-r4f]

TRUSTED LUPRON MD. BIG MISTAKE. NEVER TOLD OF POSSIBLE SIDE EFFECTS. BEEN HELL.😢😢😢😢😢

[@GeraldMarnon-r4f]

YES. YES.yes 2 years of quarterly lupron depot RUINED MY EXISTANCE. SIDE EFFECTS NEVER DISCUSSED. By SUPPOSED ONOCOLAGIST. BIG BIG MISTAKE. NEVER TRUST GET MORE OPINIONS

[@Prog-t9d]

Had one injection of Lupron and will not continue. Hot flashes, fatigue, mood swings, stomach issues.

[@robertwinther5423]

My Hot Flashes are awful

[@simondumoulin2254]

50mg of Pristiq (venlafaxine) in the morning and another 50mg in late afternoon. Thank me later...

[@robwells230]

That Effexor did nothing to reduce my hot flashes, it certainly blocked orgasms. One poison to treat side effects of another poison and on and on.

[@billyjohnson9166]

Hormone treatment was hell. Hot and cold flashes was severe. I’d rather die. After one shot for three months that was enough . I told the doctor no more.

[@robwells230]

I was Coerced, deceived, extorted and intimidated into getting one six month shot of Eligard that my dictator doctor said was a six month shot. She demanded that I be on her ADT CASTRATION protocol for two years. The side effects were so INSUFFERABLE that I gave her the old 4 Q and I refuse to ever see her again at the notorious CROSS CANCER INSTITUTE. Now, even 18 months after that shit was supposed to expire, I remain partially castrated with extremely low T with little hope of ever recovering any quality of life.

[@GeraldMarnon-r4f]

AMEN❤​@@robwells230

[@robwells230]

I find the comments about testosterone recovery after completing ADT to be very misleading. Testosterone may recover a very small amount in 6 months, but most men will remain hypogonadal for much longer, perhaps years, or forever. It would be helpful to learn how much benifit is gained by adding 6 months of ADT to radiation, How much more benefit is gained by adding another six months? And how much by adding another year?? It would also be helpful to explore alternative therapy such as adding Bicaludamide to initial Lupron type ADT, and to limiting Lupron to 6 months and replacing it with just Bicaludamide thereafter for another six months or year??? Many of us find the side effects of Lupron horrific and insufferable. We need alternatives to regain some semblance of quality of life. Give is real options. Our bodies, our choice. Hope to see more of these questions answered in up coming videos Thanks

[@gumbycat5226]

I have seen studies from 2-3 years ago and heard experts say that if you have 6 months of ADT, you are likely to recover fully, whereas if you have had 18 months of ADT, you are unlikely ever to recover fully. I don't believe there have been valid studies for different intervals. One of the big news items of last year re prostate cancer is that intermittent ADT (6 months on, 6 months off) seems just as effective as continuous ADT in terms of overall mortality, but with the chance of full testosterone recovery.

[@robwells230]

It is very obvious that the good doctor has not personally experienced the horrific quality of life destroying and life shortening side effects of ADT CASTRATION. .....There is a huge difference between the rosy picture he paints about ADT, and the actual reality of this cruel and barbaric treatment. Testosterone recovery takes years and is often permanent. After 18 your more of ADT, 75 PERCENT of all men will NOT RECOVER their testosterone levels even after a median time of FIVE YEARS. The brain fog, dementia, depression etc are deadly.. You are correct in stating the importance of men knowing before hand about ALL the side effects of ADT CASTRATION, yet the doctor continues to obfuscate and minimize these deadly side effects. Therefore, men do not get full disclosure and do not give their FREE AND FULLY INFORMED CONSENT and end up with treatment regret and outrage. Many of us, having been coerced, deceived, extorted and intimidated into this chemical castration would sooner be dead than continue to suffer barely existing as ZOMBIE EUNUCHS. Give us the truth , the whole truth beforehand so we can make our own informed decisions, rather than being duped like concentration camp inmates

[@robwells230]

Why is it that ADT affects ECG readings if it doesn't directly affect the heart??????? Why do you continue to obfuscate or minimize the severe brain fog that results from ADT???? Why don't you warn men that after ADT, their testosterone levels will remain below castrate level for many months or years and could be permanent, and that after 18 months or more of ADT, 75 percent of all men WILL NOT RECOVER THEIR TESTOSTERONE LEVELS EVEN AFTER A MEDIAN TIME OF FIVE YEARS????? These are critical factors that men must know and weigh carefully before they can give FREE AND FULLY INFORMED CONSENT, and considering the small benefit, if any, to cure rates. You owe full disclosure to your patients and viewers.

[@GeraldMarnon-r4f]

​@@gumbycat5226$$$$" VERY LIKLY INVOLVED SOMEWHERE.❤❤❤

[@CrazyHeat59]

only on Lupron 6 months and its really causing havoc! Gleason score of 9 SUCKS

[@williammack571]

6 months into adt. I dont have much for exercise posdibilities as I have 2 bad hips and heart trouble. Just had my 6th and 7th stents placed. Hip surgery is six months out,I am holding the cancer back eith the orgovix. I am tired of living. I do not wish to live sny longer. The best outcome is that I live a few more years in misery. Why waste the governments money when I have no future

[@ReachTim]

comment

[@jeremyv1783]

Do noT do this! It caused me 12 months of misery, my marriage of 27 years, grew breasts, hair in the wrong places, hot sweets and regular crying and wieght on my hips-At the end of the day it had not reduced the size of my prostate one iota (which was its original purpose) -just don’t do it!!

[@iainblack2975]

Alex is kind of hot.

[@RH-xd3nx]

1rst