ADT does it kill or only shrink cance... - Advanced Prostate...

Advanced Prostate Cancer

15,784 members19,172 posts

ADT does it kill or only shrink cancer cells?

Scout4answers profile image

Has anyone seen a clinical study on this?

84 Replies

I'll be looking forward to the answer to this question.

DSJo profile image
DSJo in reply to cesces

Me too!

ADT drugs deprive cancer cells of testosterone. The cells then experience Apoptosis or cell death. Not all cells die so the cancer may return.

I understand it is the micro-mets that will kill us. My real question is does radiation make any sense at this point when ADT has apparently killed most of the cancer cells.

The MRI ordered by my RO shows no sign of cancer after 7 months of ADT

This is exactly my situation so I went to consult with a RO that I trust.He told me to get Radiation on viewray and they don't have viewray so he is not going to do it himself and there is no benefit to him so I asked would you do it if it was you or I was your brother he said yes he would

If you PSA is low and scans don't show anything, I would stay the course and keep radiation las the backup plan.

Remember, keep all your weapons in the arsenal and only use them when needed.

It does both. It kills some cancer cells immediately. Others, are driven into a dormant state.

My question is does radiation kill the remaining dormant cells, or do both radiation and ADT attack the same easy to kill CPa cels and do the nasty little other cells always come back at some point. are we talking a about adaptive theory where the ADT resistant now take over.

Radiation can be used to debulk the cancer in the prostate. If there are just a few detected metastases, there is an advantage in doing it.

prostatecancer.news/2018/09...

There are many thousands of metastatic cancer cells in systemic circulation and in tissue reservoirs.

Once your cancer has metastasized, which it has, it is incurable with current technology. The goal is to slow it down and manage the disease. Think of it like HIV - manageable, but not curable.

From your article

Survival increases were also noted among men with only pelvic lymph node metastases (N1M0), in whom whole pelvic radiation may be curative.

Looks like the survival may only be increased by 2 months

Because radiation and prostatectomy have adverse effects, this study should make patients cautious about having any kind of debulking outside of a clinical trial.

any updates to your thinking since 2018 ?

I guess what I have to decide: is the risk of radiation side effects worth 2 more months of life with a possibility of diminished QOL during that entire life but also the potential for a possible cure.

Not easy choices

Not complaining as many on here have much worse choices or none at all.

My MRI prior to RT was my RO trying to confirm if he was going to debulk or shoot for curative intent. After a failed LN biopsy and the resulting MRI, he decided to give it a shot with the curative intent.Dr Kwon specified on a recent video posted here that Chemo and Radiation kill cancer and all else was defined differently, assuming I am remembering it correctly. It was a 3 part series and should be easy to find on Youtube. From what I can tell, you are in a similar boat as I am, though possibly addressing it sooner than I did based on PSA. Are none of your Dr's using the term "curative"? Mine did from the get go though the cancer center I went to isn't as highly regarded as the ones you appear to be talking to.

I am past the 2 year mark of finishing RT and like you ADT did not beat me down much. I have to wonder if you would handle RT similar to me as well. Of course we are all different.

The majority of the MOs and ROs that I have consulted have used the cure word.

"debulk or shoot for curative intent.

What is the difference and how is treatment different

I don't see curative intent happening without radiation. As I see it debulking goes after the mother ship so less radiation directed at the prostate only. Curative intent is whole pelvic and in my case abdomen. My RT said he wanted to get above where he thoght the cancer was. Did your Dr's use the term "regional"? That's a NCCN Guideline term and is where I was put at dx. Its a part of the high risk group and may be a result of the idea of oligometastic disease which when I was dx didn't seem to have a clear definition or universal acceptance of existence yet. I am not sure about that now and I am just speculating. I only started monitoring changes to NCCN after my dx and it existed at that time as I said.Anyway hope this helps with your decision on how to proceed.

3.6 month mean survival improvement in low burden men.

From what I can tell, you are just imagining some fictional QOL decrement in your future. The actual data tell us: "The proportion of patients in the safety population reporting at least one severe adverse event of CTCAE grade 3 or worse was similar in both study groups [treatment and control] and was dominated by side­ effects associated with long­term hormone therapy (398 [38%] of 1050 in the control group and 380 [39%] of 985 in the radiotherapy group."

Every RO has said 30% chance of having one of the side effects LT

so now you see what the actual side effects are - 38% whether you have RT or not.

Now I think you are playing with numbers as I don't plan to remain on ADT any longer than I have to as I am very aware of the ADT side effects LT. You are not comparing radiation with its opposite: No radiation.

I am just reporting the facts. The STAMPEDE trial compared debulking radiation + ADT to the standard-of-care, which was ADT without radiation. ADT is the standard of care when there are known metastases. If you refuse debulking + ADT (which is now the SOC for men with oligomets), it is not based on medical science, but is certainly your prerogative.

As I said before, I agree, adding radiation was superior but not by much.I appreciate your perspective as you have followed this much longer than I have and have all the studies and statistics at hand. You are as knowledgeable as any of the doctors I have consulted with, possibly more so.

It all comes down to the QOL vs. time to OS.

These are tough choices to make as most of the studies are focused on time not QOL

Maybe not immediately. As soon as your PSA starts to rise, go for radiation.

You replied to me, but I don't think you meant to, or I don't understand what you are referring to.

Sorry, my mistake.

My experience with MO and RO ADT kills and weakens cancer cells both said it was best to attack prostate with radiation to kill any cancer cells that might still be surviving. I had 20 rounds of radiation after ADT dropped my psa from 80 to0.83 in four months. So far all is quiet on the mets front...We shall see how long it lasts... One year on Lupron and Xtandi...Good Luck to you...

Thanks Roger , may your remission be permanent.

Perhaps you could consider radiation if your cancer fit into the groups which were study in these Stampede trials:

urotoday.com/conference-hig...

Looks like the most important finding was that aspirin improved results significantly.

No, the main finding was that radiation plus abiraterone and ADT prolonged the overall survival.

If you look at the 3rd chart (from Memory which is suspect these days) aspirin had a much more positive effect than radiation. radiation only gave a few months longer survival or time to BCR

I was told the best they could do wasput the cancer cells to sleep....when they awake you play waka mole as some have said here....i was never promised a cure...i was promised...5yrs..instead of the original maybe 2...the 5 is fast aproaching...faster than my slowly rising psa.....i have decided not to inquire asto how long instead just live life...alot of treatment has changed in 5 yrs....my older double blockade has been tough enough..sorry think i got off subject....se of adt......😱

A fellow survivor suggested what he did about 9 years ago: ADT of bicalutamide, tamsulosin and finasteride for a few months, then radiation. He's been cancer free since the RT. I went on the same combo but declined the RT because the combo worked so well, why not let sleeping PCa lie? My orig. dx was GL 4+3, no extra capsular activity, so as long as my PSA remains undetectable, I'll stay with the ADT combo. Should the PSA start climbing, I'll try Xtandi and maybe the new oral Orgovyx.Bicalutamide does not reduce testosterone production. It "deactivates" testosterone receptors mostly in the prostate gland so that free T in the blood can't be utilized by the PCa... supposedly it also prevents T from being used anywhere else in the body... but I have yet to see that happening in MY body - which is the best lab available, far exceeding any numerical data measured in test tubes, fish scanners, and yada yada do wah do wah! I started ADT in June 2018, still have my gland, no incontinence, can still orgasm and that's all she wrote. Good luck, amigo.

Scout4answers profile image
Scout4answers in reply to JPOM

Thanks JPOM glad your path has worked . Mine is gleason 9, extra capsular + two Lymph nodes. How are you dealing with side effects of ADT?

JPOM profile image
JPOM in reply to Scout4answers

SE of bicalutamide are serious ED. But even without full erections, one can achieve orgasm, especially with a partner willing to be very helpful and very patient. For more info on all kinds of methods of sexual gratification, see the Kama Sutra. 😆 Other than this, SEs can include heavy stress to the liver, which is what I'm dealing with presently. My hemato-onc. is monitoring blood levels of

AST (normal range 13-39)

ALT (7-52)

ALK.Phosphatase (34-104)

Why is he doing this? I suspect because there's been a high correlation between long term bicalutamide use and liver problems.

He's a good doctor but as a general rule, I don't trust any doctors. I think he's looking to line up my symptoms with data being presented as facts.

maley2711 profile image
maley2711 in reply to JPOM

you don't trust Docs? In what way? intentionally misleading you? ignorant?

JPOM profile image
JPOM in reply to maley2711

Mostly I don't trust drs to give me the whole story. I was pre-med in City College of CUNY and learned more than the average patient. Even after informing drs of this, I still don't get detailed answers to my questions. I can't say for sure why they hold back crucial facts about my health issues but that is what they do... which is why I don't trust them. Let me give you an example: I've had 4 cardiologists tell me that for A-Fib, I should be on blood thinners, like eliquis, xarelto, warfarin etc. because they are anti-coagulants whereas aspirin is "only an anti-platelet" drug. So I ask "can you have coagulation without platelet aggregation?" -- a question to which I have yet to get a straight answer.

I'm using hormone tx to keep my PCa asleep. I've had the uro-oncs and Rad-oncs and others tell me "You're not treating your cancer, only putting the cells in remission temporarily" -- not treating my cancer?? wow... let them go on HT, lose erections and see if that feels like no treatment. My hemato-onc tells me to stop taking the ADT for a couple months, see if my liver enzymes improve. I asked if that was really a good idea, since bicalutamide is the only thing stopping my 500+ testosterone from providing a fine feast for the PCa -- his reply was well, you can always go back on it. So I asked if the PCa, now fully fed and raring to go, could bust out of the prostate capsule into the lymph and blood vessel. I have yet to get an answer to that, other than his latest suggestion that I try one week vacay from ADT -- my reply is how bout zero?

I had a serious bout of IBS, had a doctor tell me no cure - i could go on immodium for the rest of my life -- found vitamin C and other supplement got rid of it! Had another dr. tell me I needed to have my gall bladder removed. That was 40 yrs ago, when i used a 3-day juice fast followed by a half-cup of olive oil. i still have my bladder and it's working just fine. In fact, I'm not sure the elevated liver enzymes my dr. is so freakin worried about have something to do with a 75-yr old gall bladder.

So ya, I don't trust drs, as a general rule. Do they know more medicine than I do? For sure... but can they lose sight of the forest for the trees? You bet, as we say in Nevada.

maley2711 profile image
maley2711 in reply to JPOM

In response to something/question from me, my Uro famously said " we have many more questions than answers"... I respected that answer. Your self-treatments are anecdotal, and greta to hear good results....but honestly, we have no idea if you knew better, or just lucky.

JPOM profile image
JPOM in reply to maley2711

did you miss "Do they know more medicine than I do? For sure"? And yes, anecdotal evidence. The treatment for gallstones I found in a pamphlet published by Prevention Mag, so many others have used this "folk remedy" successfully, I would surmise. Totally agree that the medical establishment has many more questions than answers. My gripe is when a dr. leans over me and yells in my face that aspirin is not sufficient to treat my afib based on a lie. No honest healer knows everything and admits as much. It's the ones that think they are infallible that really annoy the living crap outta me.

Boywonder56 profile image
Boywonder56 in reply to JPOM

Like ..." my body is the best lab available"....my sentiments exactly...now! Should have listned a little closer 6 or 7 years ago when symptoms first appeared....but was low psa and thought bulletproof at the time.....

The best response from ADT is a slow steady drop. The belief here is that aggressive cancer is more savy if I can say it in that term. It reacts to the ATD to go to sleep (hides) to avoid being killed. The less aggressive PC and often smaller mets let's call them naive they don't go to immediately to sleep or hide, they are often killed. Your doctor may use phrases like clean up the left over small mets etc.So it counterintuitive but a slow continual drop in PSA is a better response than a quick dramatic drop for the reasons I've mentioned above.

Now radiation kills PC when it tries to divide, which if it suffered double DNA band breaks it can't.

So you're going to see quicker drop from radiation. PC cells can live up to two years, so their all on different schedules as to when they try to divide.

If your PC isn't resistant to radiation, and your genes can't repair DNA breaks from Radiation given properly, radiation should kill it.

However if you don't know where to direct the radiation to get every last cancer cell, then you've missed some. And some locations it's not advisable to attack with radiation

So we need better and better ways to find where it all is if we point and shoot at it, or better systemic tools to reach it all.

PSMA, choline, axumin scanning have all been a major improvements in finding where the PC is but for most of us not good enough.

There is a new PSMA related drug that reportedly is much much better at finding your PC possibly ALL your PC. But it's probably where PSMA imaging was a number of years ago in terms of getting into trials and future FDA approval. I'll attach the link again on new reply.

TJGuy profile image
TJGuy in reply to TJGuy

Here s the link for PSMA Zirconium 89 the next best thing

eurekalert.org/news-release...

Tough call. The lack of certainty about any of the paths we choose just adds to horror of this disease. It sucks.

Good luck to you.

EdinBaltimore

I'm a bit confused as to what your expectations are from your approach to treatment. Are you resigned to adt for life or are you anticipating a cure? If you plan to remain on adt indefinitely, it may make sense to skip the RT. If you anticipate any chance of a cure, why would you not use every arsenal available to knock out every possible cancer cell? Cancer cells will not wave the white flag.I had a very good experience with RT. I had 20 fractions of 300gy + adt. Other than no ejaculate I have no LT SEs from the RT. IMHO most of the horror stories of RT SEs comes from men who have had RP prior to RT. RT tech has come a long way in recent years. I am suggesting that your RT phobia may be unfounded.

Keep on scouting. I appreciate your posts.

Scout4answers profile image
Scout4answers in reply to Burk

Thanks for your perspective Burk, all info is helpful when making these decisions

I am leaning toward Radiation but want to understand alternatives as well as I can. Thank you all for responding.Scout

I was D/X in March 2020 and have been on ADT plus Apalutamide since. I had 6 x6Gy radiation treatment to my prostate in Dec. 2020 after my PSA had dropped from 170 to .021. After the radiation it continued to decrease to undetectable (<.008) by May 2021 and has stayed undetectable since. Subsequent to the radiation, I experienced increased urinary frequency which I treated with Tamsulosin, I had no other new side effects from the radiation treatment.

I believe you have had a number of consults with respected Docs? Did you discuss with them, in detail, the entire list of possible RT side effects and the probability of your suffering from each of those side effects? From my perspective, the worst might be RT-caused strictures, fistulas, bladder problems. were you given probabilities for those that could be LT serious life-altering SEs? along with increase in LT survival should you do RT?

Shouldn't top notch competent specialists be able to answer those questions... otherwise, what good are they...just technicians?

Can you get a PSMA PET scan for your radiation?

PSA is too low , it won't find much if anything

My RO said the same but another RO I consulted with ( the one actually who sent me to my RO) said ask for PSMA you never know it may find minuscule cells and even if it finds nothing it will be base for you to compare to future PSMA scans so as long as insurance will approve there is no harm in doing so he thinks.

What I am seeing is that you are over thinking the statistics. I was in the exact same position, no nodes or Mets outside the pelvis. I opted for pelvic LN RT because of the POSSIBILITY of a cure. Nothing else offers that at this time. I did just 6 months of ADT because my PSA was low.Consider Scout: The 3.6 Mo survival benefit just shows you that there is a survival benefit statistically. It does not indicate the range or distribution of benefit nor what % might have had their PC cured. It does not apply to any individual nor to you. They stop the analysis when the 50th percentile (median) is reached (have died) in both groups, or thereabouts. They don’t show how much added life was experienced in the longer living survivors, if that makes any sense. If you have no evidence of cancer beyond the pelvis then this is your only known pathway to a possible cure. QOL requires being alive. Go for the whole pelvic RT Scout. You can get through it in just a few weeks.

If only we had clear paths for taming the beast. Alas, none exists at this point...and the variables for each person are many. The triple treatments (e.g. Darolutamide +ADT+Docetaxel ) show promise for some in increasing longevity. media.bayer.com/baynews/bay...

Fingers crossed we each get GPS directions for our journeys in the future.

I took a moment to read your profile. If I understand correctly, you decided when your PSA had risen to 8.5 in 2019 on active surveillance that you would get radiation if it went above 10. You did not get another test until 2 years later (2021) and it was 21.

The original plan was to get radiation at 10, now it was double that (though another test came back lower-15) However, you did not get radiation or a biopsy but instead a urologist gave you CT scans that showed no metastasis, so you were given a antibiotic for possible inflammation.

Then, when it went to 12, you ‘thought you were good’. The urologist disagreed and wanted you to get the radiation you had planned to get yourself if the PSA went above 10. You chose a MRI instead, leading to a biopsy revealing much more aggressive cancer.

Scans were done to identify location of disease. Still no radiation. Then you started ADT 7 months ago. Still no radiation.

Where has Scholz been through all of this? In particular I am curious as to how you wound up in the care of a urologist after seeing Scholz.

The upshot from my limited understanding is that you made a decision to get radiation if PSA rose above 10 but 3 years later you’re on ADT monotherapy.

Some would certainly say that combination therapy earlier would have been much more preferable. I don’t pretend to know.

The head scratcher to me after reading this is why the concern about radiation side effects when it’s the ADT that has the worst sides by far, and as a monotherapy is basically obsolete-and almost surely inferior.

Clearly I’m missing a few things here.

No, you have it essentially right, I am just brain storming to make sure I am going down the right path. I am also on Zytiga/ abiraterone, so not mono.

Unfortunately Scholz associate told me that gleason 6 PCa almost never turns into something more aggressive, and so I was less vigilant than I should have been. but He also said that I could still get another more agressive cancer. Which happened ?, No one now can say for sure.

It’s a wild ride isn’t it? We trust the train conductor, change the conductor, take over ourselves, give it back or to someone new etc.

We are like opposites. I chose the most aggressive path possible, which certainly may have been over treatment. I can say that I am feeling great with undetectable PSA since post RP in August 2019, since clinical trial of Lupron, Abi docetaxel and radiation began in Sept ‘19, and since full return of testosterone in April ‘21 (last Lupron shot in Sept ‘20).

Actually, at my most pessimistic I think of all that not as possible over treatment but as futile-oligometastatic is still ‘out of the barn’ as they say. But it is a controversial, grey, data free area, so I took the chance that hitting it hard even with no evidence of residual disease would yield best results.

So far it absolutely has-but of course it’s early. As Yogi Berra said, ‘it gets late early around here’.

I would say keep us updated but based on your many posts I am confident you will.😀

LOL

yes I do speak my mind...

I do appreciate all the feed back Brothers.

Good question. A couple of weeks ago I asked my oncologists a similar question: do the cancer cells die from senescence, apoptosis, or necrosis while on ADT. They didn't know the answer but the intent is curative and not life extending. They stated the cells die off while on ADT but not how. Of course that assumes they don't become castrate resistant.

Some research has indicated that ADT, while receiving RT, can have a synergistic effect in killing cancer cells as reflected by better outcomes. (Sorry, but I'm too lazy right now to look up the reference.)

I am currently on ADT and into my second year of it. I started ADT at the same time as RT. Side effects suck but I'll do whatever it takes to reduce risks and improve long term outcomes. Applying the precautionary principle is important to me.

One can increase the likelihood of cancer cell apoptosis through exercise as it releases cytokines and myokines. Research does show that men who exercise post PCa treatment have better outcomes. Drinking green tea provides EGCG which seems to cause cancer cell apoptosis but research is wishy washy.

Based on what I understand, the ADT makes the cancer cells unable to reproduce and they either die off because of senescence or apoptosis. OR. The cancer cells become more vulnerable to the bodies immune system and are killed off that way. Beats me.

There are no guarantees and in the end it is something of a crap shoot. You do your own risk assessment and make your own choices. Not sure why you want to discontinue ADT if it is being recommended?

Scout4answers profile image
Scout4answers in reply to DSJo

because of what a lack of T does to our bodies

DSJo profile image
DSJo in reply to Scout4answers

Yes it sucks to say the least. Better than the alternative for me.

I'm not certain I followed the dialogue between you and Tall Allen. And he certainly has a way way way better understanding and synthesis of the research.

But I think you both are not defining the problem properly.

The question isn't whether to use Sbrt. It is when.

You can use ADT multiple times. Basically you get to use Sbrt once.

If you could use it multiple times, the answer would be pound away with everything up front.

With an adaptive biological organism, the statistics say that's how you do it.

But with only one Sbrt shot, maybe you hold it in reserve. Pound away with everything else, then take a treatment vacation, maybe trying a heavy jolt of testosterone, just to see if you are one of the folks who respond to Bipolar androgen therapy.

All the while taking and charting monthly PSA tests.

You do that over 12 months. After that you will have a better sense of when to pull out you one Sbrt bullet.

At this point, you probably never 100 percent rid yourself of all cancerous prostate cells.

The actual goal is to die from something other than prostate cancer.... which is one of the most painful ways you can die.

Luckily, most prostate cancer patients die from other causes, mostly heart conditions.

Scout4answers profile image
Scout4answers in reply to cesces

Re: most prostate cancer patients die from other causes, mostly heart conditions.

I think the dirty little secret that the industry does not talk about is this is most likely caused by the effects that ADT has on your body

cesces profile image
cesces in reply to Scout4answers

"this is most likely caused by the effects that ADT has on your body"

Interesting. I hadn't thought about it that way.

Do you have any citations that support this conjecture? It seems to me it would be hard to prove or disprove.

Scout4answers profile image
Scout4answers in reply to cesces

Of course it is hard to prove but when you think about what ADT does to your body it is a reasonable supposition. Just my drug addled brain's paranoia. Unlikely to be any trials...

Can't speak to the quality of the studies, but there have been attempted studies of the reltionship between ADT and CV death...as I recall, studies were inconclusive. what we do know is that , overall, ADT + radiation results in longer life expectancy than than doing nothing.... at least for N0MO staged men. See MSK nomograms for treatment and non treatment.

DSJo profile image
DSJo in reply to cesces

There is plenty of research to show ADT increases triglycerides and cholesterol. Also research shows our risk of dementia, strokes, and/or heart attacks increase by 30% while on ADT. If the cancer doesn't get you, maybe the cure will.

Boywonder56 profile image
Boywonder56 in reply to cesces

There are studies....and info in past post when i started aft 4.8 yrs ago i had a stress trst and other cardio workups for baseline .....encouraging words from heart doc....your hearts not gonna kill ya....the cancer may....Any who....luoron/ aplutimides are known to encourage cardiac events...if nothing els the stress from fighting this bastard is cause for a heart related death...

DSJo profile image
DSJo in reply to cesces

The last statement "Luckily, most prostate cancer patients die from other causes, mostly heart conditions" has been shown to be a myth.

medscape.com/viewarticle/95....

Recent research (above) has shown that 80% of men diagnosed with metastatic cancer die from the cancer - not with it. This oft repeated myth is the justification for the low levels of research funding of prostate cancer and why we are still using chemical castration as a "cure" for the last 80 years.

You'd think that by now someone could have come up with something better?

cesces profile image
cesces in reply to DSJo

That was Dr. Myers experience with his particular patient base, which was fairly large.

I will take a look at your link.

Oops. You need an account to read it.

You do know that prostate cancer kills (for most people) by chewing up their bones and thereby setting their nerves on fire. It's very painful and requires the use of huge quantities of opioids, which apparently don't help all that much.

If it was that common, I would expect we would hear more about that on this forum?

It's not something you would forget to mention on the way down into hospice.

DSJo profile image
DSJo in reply to cesces

Yes I am very much aware how awful the death associated with prostate cancer can be which is why it scares me so much.

Prostate cancer is the second leading cause of all male related cancer deaths so that should tell us something. Men are dying from lots of things and cancer is the second leading cause of death in men (22% of all men die from cancer) and prostate cancer is the second cause of all male cancer deaths. (Lung cancer is #1). Point being, lots of men are dying because of prostate cancer. Why don't we hear more about this is a good question.

Saying "most men die with prostate cancer instead of from it" ignores how deadly a cancer it is. It's like saying most people die with arterial sclerosis or dementia and not from it. The statement has no value and doesn't help in finding a cure.

cesanon profile image
cesanon in reply to DSJo

Yes, no one ever seems to measure quality of life issues in these studies or the recommendations that come out of the studies.

But I am not quite ready to accept the idea that most of our are going to go out in hospice with our bones dissolving in front of us.

DSJo profile image
DSJo in reply to cesanon

On that I believe we can all agree.

maley2711 profile image
maley2711 in reply to DSJo

why then do we have approx 200k men diagnosed each year, but " only" 30 k dying?

DSJo profile image
DSJo in reply to maley2711

I don't know for certain but it is likely because not everybody diagnosed with PCa goes metastatic. I don't know what percentage of men diagnosed become metastatic but I would suspect this would account for the difference. Secondly, the latency for the cancer going metastatic followed by death will cause the recent surge in advanced PCa diagnoses to be manifest in the future. In other words, the number of PCa deaths will likely start to climb. Thirdly, the reference I gave earlier identifies that one of the problems is inaccurate death certificates which results in the number of prostate cancer deaths being under-reported.

I don't know if you've seen this article written by Ben Stiller but it helps explain what is going on and what need to change.

thepcap.org/how-ben-stiller...

A bit about me: Despite a strong family history of prostate cancer, my former GP refused to do PSA testing and told me I only had an enlarged prostate. Stupid me, I trusted her. Three months after a physical exam in which I was told everything, including my prostate, was great, I had a blood clot in my urine. After a year of diagnostic work, including a negative biopsy, I was diagnosed with PCa on my first day of retirement. By then my PSA was 25 and the tumor had extended out of the capsule in three different places into the prostate bed.

I am quite bitter about the official guidance given to GP's in the USA and Canada not to do PSA testing. My QoL could have been a whole lot better than it currently is if not for those jerks.

maley2711 profile image
maley2711 in reply to DSJo

I agree with " 80% of men diagnosed with metastasis" die...though distant metastasis, not lymp node metastasis is the real predictor of death.....I think you can find that observation from a number of studies.evidently, most men diagnosed just never live long enuf to develop distant metastasis.....and the higher the risk group, the greater the risk...of course.

I belive the current guidance for PSA testing is for Docs to discuss the pros and cons of being checked....and let the man decide. How many Docs follow that guidance...I have no idea. My female GP mentioned the test several times during my infrequent visits...I consented twice at ages 64 and 70....the age 70 result exceeded kaiser's max allowable pSA for age 70+.....they use 6.5, and I was 7.5 until last check last summer..and One core 10% 4+5 found. Trouble in River City !! January PSMA PET, bone scan, etc finds nothing ?

DSJo profile image
DSJo in reply to maley2711

Agree, Here in Canada, the guidance to physicians is no PSA test and no discussion with the patient. Period. This is based on research that is more than 15 years old. Dumb.

Well, there are no side effects when the choice is not to treat. Other than cancer itself being allowed to do what it does uninhibited!

And for the two months... I agree Mortality and Morbidity are two separate and distinct considerations we patients must decide upon, but I'm left to wonder, when approaching the edge of the cliff, would we want to be a mile back??? Would we do anything then for a few minutes more?

A conundrum of course...

As a trader I learned to never look back, can't change past so thinking about it is a waste of your time. Make the best decision you can at the time based on the info you have in hand.

Boywonder56 profile image
Boywonder56 in reply to Cooolone

Well said cooool daddy.....life is a series of cliffs.......i like icarus am....learning to fly....

I think the answer to your question has to do with the fact that there are 3 different kinds of prostate cancer cells: 1) cells which require endogenous testosterone; 2) cells that require testosterone that the cells produce themselves; and 3) cells which do not require testosterone.

We don't know how long type 1 cells can live without endogenous testosterone (as in ADT) but let's say its 24 months. So those cells should be gone by that definition. However, some type 1 may require shorter or longer ADT. Nobody knows.

Assuming ADT gets rid of type 1 cells, then the theory is that some type 1 cells become able to produce testosterone and become type 2 cells, or there were always type 2 cells but are in very small numbers. Again, nobody knows. It is these cells which are targeted by second generation ADT drugs such as enzalutamide, daralutamide, etc. These drugs block absorption of testosterone made by these cells by blocking the androgen receptor. So, its like someone who can grow his own food but he can't eat it!

After type 1 and 2 cells are taken out of action, the type 3, which have always been there, do not have to compete against the type 1 and 2 and therefore grow and eventually prove fatal. Chemotherapy and immunotherapy are the only treatments for type 3 (and perhaps radiation therapy by direct action on the DNA of the type 3 cells in the field).

We know that cancer with low PSA is bad, probably due to the existence of large numbers of type 3 cells. Cancer with high PSA seems to indicate predominance of type 1 cells which are amenable to ADT.

Bottom line, follow the standard of care and get the radiation.

maley2711 profile image
maley2711 in reply to ADTMan

without the SOC, we are doing experiments of one...are we that wise??? MOST of us have no background that would suggest we know better?

Cooolone profile image
Cooolone in reply to maley2711

Are we that wise?

The Dunning Kruger effect says that NO, we are not! But many of us get caught in that trap... Lol

Scout4answers profile image
Scout4answers in reply to ADTMan

great overview of what it may look like at cel level Thanks

Some of what you’ve mentioned here reminds me of what various MO’s told me. I’m only paraphrasing here from (an arguably questionable) memory, but FWIW:

wt micro-mets…from Paul Corn at MD Anderson, Houston: “Nobody has ever died from micro-mets.”

So, our take on micro-mets appears to be different. Perhaps it depends just how “micro” we’re talking about. That’s always seemed somewhat arbitrary to me, since it is defined by the limits of our imaging technology…which changes over time. Am I misunderstanding?

wrt to your Gleason 6…from Michael Glode at UC Health, Denver: “Your biopsy was Gleason 3+4, but perhaps some Gleason 8’s were missed…”

Really? Is that a thing? Regardless, I do hope your Gleason 6 is definitive.

In either event, to your point about whither RT: I had my 2nd round of RT in 2018. During the 6 weeks of treatment, I was borderline suicidal — horrible gastrointestinal SEs, fatigued beyond measure, and badly depressed from all of it. But the SEs disappeared within a week of my last treatment, and for now it appears I’ve gotten a fair amount of benefit from it. Key phrases here are “it appears” and “for now”.

But, if given the chance to revisit 2018, yep I would do it again — assuming I’m right about the benefits and lack of long-term SEs. Especially since I now know a lot more about how I should have managed the GI effects — those bothered me much more than the fatigue.

I do wish you luck with your decision. May we all make the right decisions henceforth and forevermore, right?

I do believe that’s the first time I’ve ever used the word “henceforth”.

Thanks for sharing your experience, helpful. I always find a gem in every post.

would you please elaborate;

Especially since I now know a lot more about how I should have managed the GI effects — those bothered me much more than the fatigue.

What I’ve found about my GI system is that it responds well to PEG-type supplementation (e.g. Miralax) to deal with acute constipation (which was an SE from the RT), but not as an ongoing supplement. I’ve also learned that a combination of magnesium and psyllium (e.g. Metamucil) is an effective maintenance strategy to balance b/w constipation and diarrhea.

The RT also caused some bad nausea, but the meds I was given to manage it caused bad constipation…pick your poison. But at the time, I didn’t realize how useful PEGs could have been to solve that problem (again, I emphasize, for me).

Bottom line I realized in retrospect that my 2nd-round RT didn’t have to be all that miserable. Sadly it took me about 2-3 years of post-RT experimentation with various OTC stuff to figure out what combo was right for me; I just wish I’d had it figured out before the RT.

I do believe this “right combo” will vary for each of us.

You may also like...