Hormone Therapy & Side Effects For High-Risk (Gleason 8) #ProstateCancer | Mark Scholz, MD #PCRI

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."

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!

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.

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 !

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. 💙

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.

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!

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

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!

I’m 3 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!

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.

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.

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)

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.

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.

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.

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.

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.

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.

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.