I watched a video posted by PCRI recently on YouTube. In the video entitled "Treating micro-metastatic disease", Dr Mark Scholz mentioned that undergoing one year of ADT is sufficient post radiation. Thereafter just monitor the PSA for any rise, and use PSMA PET scan to locate any cancer and to radiate whatever spots of cancer that are found.This May I will reach the one year mark of my ADT and seriously considering stopping the ADT because of the side effects... fatigue, muscle loss, forgetfulness, loss of libido, etc.
What do you guys think?
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John347
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Dont stop your ADT. I had radiation and 30 months of ADT. All was ok and the consultant stopped the ADT early (was supposed to run 36 months). After 12 months off ADT my PSA started to rise continuously from 0.04 until above 4 they gave me a psa pet/ct scan which showed widespread mets above and below my diaphragm. Was then given 6 rounds of Docitaxel. If you get that you will think nothing about your ADT. Play it safe. Not worth taking risks you don't need to take.
I’m am very surprised your doc allowed your PSA to rise above 4! Especially since you can get an effective PSMA scan at PSA levels between 0.5 and 1.0. Allowing you PSA to get to 4+ could have contributed greatly to the resulting wide spread Mets.
Im in the UK. Its the NHS guidelines here or it was at that time. Nothing I could do except wait & watch it climb and pray I wouldn't have to wait years to get a scan. Sadly we, in the UK, are all in the same sinking ship.
I Couldn’t stand the ADT so eventually got off after 7 mo and in the sixth month starting taking ivermectin and psa has dropped consistently (1.95 - .65) for over a year now. People are hung up on the ADT but I believe the sooner one can get off the better as you mentioned w the detrimental side effects, especially the one pertaining to the heart. Most of the time ADT only works for 2️⃣ years then the cancer cells find a way to circumvent and come back with a vengeance, more virulent than ever n harder to kill. Amazingly though when they become hormone (castrate) resistant the ivermectin has shown to reverse this and become hormone sensitive again, so for those people that are adamant about using ADT they still can. Really like Dr Scholz and he tries to keep the audience informed w the latest therapies n treatments… good luck as there are many ways to fight this dreaded disease..😊😇😇😎
The way you and others have been misinformed is a good reason to not get info from youtube videos. It is often misinformation that you can't correct because sources are lacking.
The duration of adjuvant ADT depends on the type of radiation and the risk category.
I read the PREDICT trial criteria for participation and it said no bone metastasis. Why do you think they would exclude this? Is it that bone metastasis is too high risk?
When there are bone metastases, it is no longer high risk localized ± pelvic lymph nodes prostate cancer (which is what the PREDICT trial is trying to cure), it is newly diagnosed metastatic prostate cancer.
For newly diagnosed metastatic PCa, triplet therapy is the standard of care with prostate debulking if there are 3 or fewer bone metastases. Slowing progression is the goal.
I think my son falls into the category of high risk localized pelvic lymph node cancer. Do you have information or a link to the PREDICT trial I can read and send to him? Thanks so much as always.
My son just told me that he’s getting in touch with his previous doctor in San Diego so we will have two opinions. I really wanted her involved.now I understand why your link to the Predict trials.
It was OK until he started talking about recurrent patients about halfway in. At that point he started substituting his own anecdotal experience for trial data. It is pure nonsense that he would never write in a peer-reviewed journal article. It demonstrates why patients should never take advice from youtube videos (unless they are linked to actual trial data). It sounds true, but it is really just poorly reinforced opinion.
Dr Scholz is a well respected oncologist with more than 30 years experience treating prostate cancer patients. I have watched scores of his videos since my diagnosis nearly two years ago and have learnt a lot.It seems he has kept abreast of the latest developments in the field of prostate cancer research. If he were my personal oncologist, should I reject his advice because he is not able to back up his opinion with reference to peer reviewed journal articles?
Yes but TA is not marketing to make money. I have read both good and bad about Scholz… like unexplained expenses on their bill. I like that TA isn’t making a living off giving advice and find him very knowledgeable. But I’m not saying that Scholz is unethical. Just my humble opinion.
I have met and like him. But even he can say unsubstantiated misinformation on a video, which is my point. It seems from that video, that he has not kept abreast of the latest developments. He has a very large practice that he expands by marketing to patients and he is not hold a position with a teaching hospital, where he would be required to do innovate research and publish about it. Perhaps he doesn't have time to keep up. I have never seen him present to his peers at ASCO or similar oncologist gatherings. That is where you see the true stars of the field. When you say "well-respected" - by whom? The patients he markets himself to?
"If he were my personal oncologist, should I reject his advice because he is not able to back up his opinion with reference to peer reviewed journal articles?" Yes! The good ones can, and will make clear that when they are trying something experimental, that it is experimental.
Put yourself in an oncologist's shoes for a second. All day you see patients you cannot cure. You probably went into the practice because you are highly empathetic. You see a lot of patients and spouses break out in tears and are very anxious. There is a great temptation to make unfounded claims, to go beyond the science. I think a doctor has to respect his patients enough to trust them with the truth. Videos remove that face-to-face interaction, which is vitally important. One can say anything on a video - no one (but me, apparently) will challenge unfounded assertions.
I don't think what he is proposing to his patients is anything unusual or "experimental". He is merely proposing that after 6 months or 1 year of ADT, the patient should monitor his PSA with blood tests every 3 or 6 months, and if there is a significant rise, to do a PSMA PET scan to locate any mets in the body and to radiate them.
His main concern seems to be maximizing the quality of life of the patients.... while the peer reviewed articles you cited seem to focus on maximizing the length of life of the patients.
You are advocating for a longer duration of ADT of at least 2 years. Ironically this could shorten the life span of the patients....
"Numerous studies have found increased incidence of myocardial infarction (MI), stroke, arrhythmia, hypertension, and sudden cardiac death (SCD) in men receiving ADT. Cardiovascular disease is already the second leading cause of death in men with prostate cancer."
I will provide a link for the article where the above quote is taken from below...
What he advocates in that video is replacing hormone therapy with MDT to PSMA-identified metastases. There are no data showing it doesn't harm survival. We know ADT improves survival, and forgoing it is risky.
Certainly, there are QOL and minor health risks to ADT. And these should be discussed with each patient. But to broadly recommend an unproven protocol is unconscionable.
Here is what has been proven to work in recurrent patients:
As you see, it involves hormone therapy intensification for a brief time. Replacing it with his imaginary solution of MDT may cause harm. If a patient wants to do MDT in addition to following a proven protocol, there is no harm.
I tend to agree with you, and specially in USA the PET CT PSMA records are not very long. In the countries wuere it has been routinelly used for the last years, the Doctors are much more confident at reducing ADT periods with frecuent PET scans mnonityoring the development of mets. Actually there is a new trend of trying to use L177 earlier on.
My son has been on Lupron three months for two years also generic Zytiga and prednisone. He also received about five or six or seven weeks of IMRT in March of last year. His doctor at the Mayo wants him to stop all medications because his PSA has remained at <01.0 every three months. But he previously had aggressive tertiary five cancer in several of the nearby lymph nodes.
Do you think the link to the PREDICT study you sent me is still applicable to him or is he past that stage for the study? I read that the study is being run near us.
Also I have been reading about the Ferrotrans study in Germany. What do you think of Ferrotrans? They are looking for candidates also.When it’s complete it’s supposed to be able to detect cancers smaller than the PSMA Pet scan.
Thank you very much.
PS He has been tested, and his cancer is not supposed to be family related, even though he has two uncles with it and my father had prostate problems too not cancer but problems.
He may be cured. With cancer only in his prostate and pelvic lymph nodes, whole pelvic radiation + hormone therapy may be curative. The SOC adjuvant hormone therapy is 3 years of ADT + 2 years of abiraterone. The PREDICT-RT trial will see if apalutamide and ADT, both for 2 years, gives good results.
If he already has had whole pelvic radiation, there is no point in detecting more pelvic lymph nodes, and he probably would not qualify. At any rate, how do you know if he hasn't been cured already and requires no further treatment?
His doctor at his recent appointment at the Scottsdale Mayo clinic told him to stop all his medicines that there was no reason to continue on taking any of them in beyond 2years! He’s at the two year mark on all three meds, not the three-year mark . So he just finished his two years on Lupron prednisone and generic Zytiga at his last visit to her..
I became alarmed because I knew that wasn’t correct and he then made a telehealth appointment to talk to doctor McKay in mid January about the situation.. His records apparently are on the same medical system.
He did have IMRT for about 6 weeks in March after starting his meds in January. They targeted the middle abdomen area where he had the cancerous lymph nodes not any further..
His PSA has remained at.<01.0 the entire time.
So does that mean he doesn’t qualify for the Predict trial? Where does he go from here if it’s not safe to stop all his medicines?
I have felt the doctor at the Mayo, is not using the standard of care for his very aggressive tertiary five cancer.
Does this mean he stops the prednisone and generic Zytiga and stays on the Lupron for another year? I think that’s what the SOC is? Basically, where do we go from here?
So the additional year of Lupron is not necessary?
I thought it was the SOC and was absolutely necessary, but I guess not. He hates it, and he hates all of the meds, I had previously told him that the Lupron had to be taken for three years. I was under the impression that stopping at 2 years would be considered a dangerous vacation not a cure.
His cancer was diagnosed as very aggressive tertiary five.
"So the additional year of Lupron is not necessary?" I did NOT say that. Once again, Stampede tested 3 years of ADT and 2 years of abiraterone compared to 3 years of ADT in men with nodal metastases only identified by conventional imaging. It doesn't answer these questions:
1. Is 2 years of abi+ADT enough?
2.If the metastases are identified on PET scans but not on conventional imaging, can a shorter course be used.
1. Stay on all three drugs meaning generic Zytiga, prednisone and Lupron for an additional year. (3 years total).
Or
2. Stop generic Zytiga and prednisone but stay on Lupron for another year to avoid taking a vacation that puts him at greater risk.
The doctor at the Mayo definitely wants him to stop all three meds now and I remembered you’re telling me that would be taking a vacation, but I’m not sure which meds he would continue to take till the end of the third year to avoid a vacation.
Based upon what I thought you told me in the past about the Stampede trial, I have encouraged him to go for three years with the Lupron but stop the generic Zytiga and prednisone now.
had previously told him that the doctor at the Mayo is misinformed based upon the Stampede Trial to stop the Lupron now.
I have tried to read over the Stampede Trial but somehow it’s honestly clear as mud 😵💫 to me.
So basically where do we go from here? We’re at the two year mark.
Thank you for all your help in sorting this out. I’m just trying to give accurate advice to my son, and I didn’t think the advice my son received at his last visit. from his present doctor is correct and I am scared.
I'm certainly not a guy, but I guided my husband through 7 successful years living with advanced pca. He had a well-known oncologist who took my husband off ADT because of the wretches side effects, and had him use estrogen patches instead. The treatment was wonderful and worked well, even covering his bone strength instead of continuing with a bisphosphonate.
That’s music to my ears. The side effects from my son’s meds have been wretched as you put it and he is really tired of it and would love to get off, but he doesn’t want to risk his life. I will mention that to my son and maybe he can talk to the specialist mid January about it. Thank you so much for your input.
You are very welcome. Please let us know how it goes. Our dr. was the eminent Charles Myers, who is now retired from his practice in Virginia. That said, I believe there are other prostate oncologists who use the estrogen patch protocol. Be persistent. Your son deserves the best treatments out there.
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