Over treatment: Lower Gleason prostate... - Prostate Cancer N...

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Over treatment

Azbound profile image
48 Replies

Lower Gleason prostate cancer is overtreated in the United States, and there are several factors that contribute to this: Aggressive treatments

Many patients receive unnecessary aggressive treatments that can cause significant harms, such as urinary and bowel incontinence, sexual impotence, and death.

Overdiagnosis

Screening can overdiagnose some low-risk LOW RISK!!! tumors that may not have caused harm.

Patient selection

Careful patient selection for screening is important to reduce overtreatment. For low risk tumors! Financial considerations

Unnecessarily labeling certain conditions as cancer can lead to financial strain for patients.

Physician behavior

Some physicians may continue to react to elevated PSA levels by ordering multiple sets of biopsies.

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Azbound profile image
Azbound
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48 Replies
Lizzo30 profile image
Lizzo30

I think estrogen should be used as an ADT for castration it was done before it can be done again but this time it can be applied transdermally

The current ADT s seriously compromise quality of life

Teacherdude76 profile image
Teacherdude76 in reply toLizzo30

Two things:1. My personal experience, and many others on this forum, has not had a bad experience with ADT! Takes effort yes but very manageable.

2. If a person expects a poor QOL they WILL have poor QOL. Expect and work for a good QOL & you will have what you expect - a good QOL!

tucker_man profile image
tucker_man

Early stage cancer rarely progresses further? That’s laughable. It’s not a matter of if it will progress but when. Otherwise, active surveillance wouldn’t be necessary. Every stage 4 cancer started as early stage, it didn’t spontaneously emerge as stage 4. Late stage cancer is cancer that wasn’t detected early enough. This is all just common sense.

JWPMP profile image
JWPMP in reply totucker_man

This ! ☝️

JWPMP profile image
JWPMP

EVERY MAN OVER 49 SHOULD GET PSA TESTING ANNUALLY... (and earlier depending on family history)After that, options should be carefully considered, discussed and at the very least, consult a center of excellence.

Overtreatment can be addressed!!

BUT AT LEAST HAVE A CHOICE BEFORE IT'S STAGE IV

Do you know what Really compromises QOL and causes significant harm ???

Death !!

This overtreatment BS argument makes my blood boil.

Try living with stage IV and then tell me screening is unnecessary...

B@$+@#%S at the US Preventative Services. And insurance companies worrying about dollars.

Tried this same crap about mammograms.

Rant over (for now)

tucker_man profile image
tucker_man in reply toJWPMP

My stepfather was diagnosed with elevated PSA. Doc told him it needed to be monitored more often. He didn’t go back for three years and his PSA was in the hundreds from stage 4. He lived another 7 years using many different experimental treatments but would have lived a normal lifespan if he’d received treatment early. Just ask my broken hearted mother.

JWPMP profile image
JWPMP in reply totucker_man

Sorry to hear this. 😢

National4894 profile image
National4894 in reply toJWPMP

AMEN! All of us on this site have several things in common, cancer, fear of the unknown, and in need of direction and the experiences of others. I see so many on this forum to whom I find to be insensitive. This is not the site for them. Maybe Facebook or X? God Bless us all and may 2025 be our healthiest year yet! Cancer is the enemy, we are at war! We need an Army working together!!!!

drzaius profile image
drzaius

tucker_man and JWPMP are right here. Isn't the point to catch it early so you can have options at least. I remember when they eliminated the PSA test from blood workups because they thought it was being over diagnosed. I told my doctor to do it and I'd pay for it myself. Then the studies came out after a few years that show the death rate among men had increased, then it was put back in. Also, yes there are side effects but at least in the case of radiation 2024, it has been much improved.

NanoMRI profile image
NanoMRI

Rising death rate. More men needing ADT and more facing CR.

bdrakes profile image
bdrakes

what’s your point?

Teacherdude76 profile image
Teacherdude76 in reply tobdrakes

Hopefully his point was to elicit these responses in disagreement.If not then he's an low IQ guy.

CAMPSOUPS profile image
CAMPSOUPS

This is the advanced group here. Probably at least from my point of view you wont get much in the way of confirmation for what your promoting in your post here amongst us with an expiration date on our forehead.

I need treatment. I have since day one. Need a lot of treatment lol.

MNFarmBoy profile image
MNFarmBoy

I hope that the reaction of anybody who reads the first post in this chain has been & will be "Huh, there must be more to this story!", and to not accept any of its assertions unless backed up by facts that provide at least the essence of the full story required, before accepting any of those assertions to guide their own thinking & actions. My own mid-depth search for more complete and up-to-date information produced the following:

1. The post appears to consist of incomplete excerpts taken out of context from the outdated "Final Recommendation Statement: Prostate Cancer: Screening, May 08, 2018", issued by the U.S. Preventive Services Task Force. That recommendations includes the following:

"Recommendations made by the USPSTF are independent of the U.S. government. They should not be construed as an official position of the Agency for Healthcare Research and Quality or the U.S. Department of Health and Human Services. ... This topic is being updated. Please use the link(s) below to see the latest documents available. Update in Progress for Prostate Cancer: Screening"

According to their website, "The U.S. Preventive Services Task Force is made up of 16 volunteer members who are nationally recognized experts in prevention, evidence-based medicine, and primary care. ... Task Force members are appointed by the Secretary of HHS to serve 4-year terms. Members are screened to ensure that they have no substantial conflicts of interest that could impair the scientific integrity of the Task Force's work."

To me, the above says (screams!) "Maybe their conclusions and advice are good, but skepticism is warranted pending corroboration and continued scrutiny of their track record". Another comment suggests that they led the public astray on the issue of screening for breast cancer. I wouldn't be surprised to find significant conflicts of interest for the members, despite their assertion of "no substantial conflicts of interest"; my cursory search for such conflicts didn't turn up any such publicized info, but an in-depth assessment of each member would be required to convince me. To save others time & effort to see the source of the above: uspreventiveservicestaskfor...

2. For more information regarding the assertion in the first post, "Treatment outcomes | Patients with early-stage prostate cancer have a good prognosis, and the cancer rarely progresses further", it appears to me that the "American Cancer Society Recommendations for Prostate Cancer Early Detection" (cancer.org/cancer/types/pro... provides a more complete story regarding the aftermath of changes in recommendations regarding screening for prostate cancer, and the role of treatment in reducing the progression of early-stage prostate cancer. Their website indicates that their recommendations are updated annually, it appears in November, however, the most recent update turned up in my search indicates "Last Revised: November 22, 2023", so the recommendations might have been updated since Nov. 2023, so if anyone turns up such an update, please let me know.

Best wishes to all in your efforts to arrive at a well-founded course of action for yourselves and your loved-ones!

JWPMP profile image
JWPMP in reply toMNFarmBoy

Thank you for this excellent research !

PT49 profile image
PT49

I was 73 yrs old when my PSA went from .7 to 3.93 in 3 years. My Urologist first question was why are you here? Your PSA is normal. I explained it was the velocity I was concerned about. He was just going to watch it. Ordered a mp-MRI immediately and a repeat PSA in 2 months. After DRE he ordered a biopsy as well. mp-MRI came back Pirads 4 (would've been 5 but lesion wasn't large enough yet). Biopsy a month later showed 4 lesions--all Gleason 7 (4+3). PSA now two months later was 5.3. At some point, while my PSA was very normal, my cancer began. While there may be many who may have a benign form (mine definitely wasn't) any lesion beginning with 3 +3 should be thoroughly investigated and not just ignored. It all comes down to these three things: EDUCATE, EDUCATE, EDUCATE. The only good decision is an informed decision. IMO there is a very thin line between over-treatment and no treatment.

National4894 profile image
National4894 in reply toPT49

100!!! Same exact scenario with myself. Today, I am 62. 4 years ago, my PSA went from 1.30ish, to 4.3. I would get it tested yearly with my physical. Shame on me, I did not notice the drastic increase until 2 years later. I brought it to the attention of my Dr and asked why that was never a red flag for him. He said because it's in normal range and he wasn't concerned. Well, reluctantly, I bought into it. A year later, it went up slightly again, so I went to see a urologist with my concern. Again, he said I'm not concerned, you're within normal range for your age, it's just BPH and an increase in PSA is normal. Once again, I'm thinking, oooookay? 3 weeks later, I received a call from a friend, he told me he was diagnosed with prostate cancer, I asked him what his PSA was. Keep in mind, he was the same age as me at that time. His PSA was identical to mine. Needless to say, now I'm pissed off and concerned. I made another appt with the Urologist, walked into his office, told him my story and DEMANDED further testing. Fast forward, I had multiple tumors (4+3) 7 Gleason! Gentlemen, no one cares more about our health than we do, and our loved ones of course. A test for PSA Levels is not good enough! Make MRI's part of your yearly physical, and if you see a significant spike in PSA, something going on. Get it checked!!! God Bless us all.

PT49 profile image
PT49 in reply toNational4894

Probably the only reason I caught it early was because my brother was diagnosed with it at age 58, and from that moment on I checked my PSA yearly. For 15+ plus years my PSA ran between .6 to .8. Since I am a retired medical technologist and have a lot of medical experience I distinctively knew that when my PSA began climbing something abnormal was going on. I immediately began to research PC. I knew I had it before I ever went to the Urologist.

PT49 profile image
PT49 in reply toNational4894

Just curious--how are you doing now? Had it spread yet? What treatment option did you use?

National4894 profile image
National4894 in reply toPT49

I’m doing good so far. I had HDR Brachytherapy at UCLA. Pre-Radiation I was 4.3 PSA, 9 months out i’m 1.2. I’ve been told by all health care professionals that with HDR Brachytherapy, and it may be true to some other radiation treatments, i’m not sure, PSA levels are gradually slow. They say it can take as long as 18 months to get to your base.

PT49 profile image
PT49 in reply toNational4894

Glad to hear that you're doing well. You're fortunate to not have had to do ADT. For me, the SBRT was a walk in the park compared to the ADT. But that is all behind me now and hopefully it stays there.

National4894 profile image
National4894 in reply toPT49

Amen! I will lift us all up in prayer!

fast_eddie profile image
fast_eddie in reply toNational4894

My PSA was only 2.7 when I was diagnosed 8 years ago. A suspicious DRE is what got me sent to a urologist for a biopsy. My GPA at the medical school affiliated clinic refused to order a PSA test. The urologist was surprised that he had to order that. That task force didn't do men any favors.

National4894 profile image
National4894 in reply tofast_eddie

WOW!! This has to stop! I am not at all surprised! How are you doing now?

fast_eddie profile image
fast_eddie in reply toNational4894

I'm doing fine. I hope you are too.

National4894 profile image
National4894 in reply tofast_eddie

I’m doing fine as well…

Azbound profile image
Azbound in reply toNational4894

My biopsy said 3 + 4 but MRI said pirad 2. And all other scans negative also. My PSA went from 7.3 to 4.5 PSA .

Teacherdude76 profile image
Teacherdude76 in reply toPT49

Your PSA might have been in the normal range but clearly was not normal. That urologist was not aggressive but wimpy.

fast_eddie profile image
fast_eddie

What a mis-guided post. You sound like a spokesman for the US Preventative Services task force. Their ridiculous war on screening has had one dramatic effect -- more men are showing up metastatic at diagnosis. Screening isn't the problem. Overtreatment is the problem. Too many urologists have only one tool in their tool kit -- radical prostatectomy surgery. That's what they are trained in, that's their bread and butter. Screening provides information. What's wrong with that? Found early prostate cancer can be successfully treated and sometimes cured and without the most invasive treatment option urologists resort to. When you show up metastatic a cure is very unlikely. Want to stop over-treatment? Get after the urologists who are over-treating; don't stop screening. That is penny wise and pound foolish as they say. There are too many tragic stories on this site of men whose cancer progressed for lack of timely screening and treatment. What a bogus post.

groundhogy profile image
groundhogy

You are really really smart for having just joined the forum only several weeks ago

Teacherdude76 profile image
Teacherdude76

Dear Azbound; Nice writing skills. Total cow dung but nucely written.

Given we Americans have routine blood tests for diabetes and other health issues a PSA test should be mandatory starting in he third decade. Given blood tests are painless and those men that contract prostate cancer in their 30's tend to not survive decades early testing if for no other reason than to have a baseline number. Over treatment? Oh come on! Many feel Cancer is a death sentence and want to live as long as possible, even those that expect less than ten years left. I can't imagine being told: "Go home and die a horrible life".

I read your non existent bio.

Have you ever been diagnosed with any Cancer or are you just a cranky person that likes shaking things up?

I think the latter.

Azbound profile image
Azbound in reply toTeacherdude76

You seem bitter. What was posted was talking about people with low Gleason scores. Apparently yours is a high Gleason and you have an attitude about it. Not everybody has 8 9 or 10 Gleason. There are people getting their prostates removed with a Gleason 6 . Why would someone with a Gleason 6 have their prostate surgically removed unless they're young. The minute they find out?. Because a urologist who does surgery suggest it! And not all prostate cancer is a death sentence! What are you talking about? Prostate cancer is the slowest moving cancer that you can possibly have especially lower gleasons and can be totally cured one of the few cancers that can be cured.

JWPMP profile image
JWPMP in reply toAzbound

In case you're in the back of the room and can't hear (with all due respect)

NOT SCREENING ISN'T THE ANSWER! !!!

And it can only be cured if DETECTED EARLY. AND YOU CAN ONLY DETECT IT EARLY WITH SCREENING.

And Teacherdude may not be, but you can bet I'm BITTER!

Watching helplessly as my husband endures this beast that should've been caught EARLY.

And tell the Gleason story to families of G7 guys with wide spread metastases.

Gleason only matters while confined in the prostate.

A freight train travelling 5 mph will kill you just as dead as one traveling 50 mph if you're on the tracks!

Treatment needs to be carefully planned and thought out.

Screening is LIFESAVING!!

Azbound profile image
Azbound in reply toJWPMP

try rereading where does it say not to get screening?? Have been talking about low Gleason tthat have not spread. Being overtreated.

JWPMP profile image
JWPMP in reply toAzbound

What I'm reading from your posts (paraphrasing), is a big factor in overtreating is over screening. That there should be LESS screening. Actually there should be more.I also don't see how you can have it both ways. You say prostate cancer is the most curable. Well that can only happen with early TREATMENT BEFORE it spreads.

There's another comnent here from a man with G7 and multiple tumors.

Gleason doesn't matter once it's out of the barn.

When my husband was Dx'd, his urologist suggested a certain path. A friend spoke with me, so we got a 2nd opinion from an Oncologist at UCSF. Totally different plan. Thank goodness. A different friend that stayed in this area, no 2nd opinion, just passed away last month. Dx'd same time as my husband. He went to UCSF the last resort. He'd been on the wrong track for 3 years.

Someone commented above...fine line between overtreatment and no treatment.

Men here know what's what.

We're just hoping you don't advise your friends that screening is unnecessary.

Azbound profile image
Azbound in reply toJWPMP

Again no one's talking about not being screened. But being a Gleason 6 or 7 and have it localized and yet the urologist rips it out! Surgery. Is over treatment!

JWPMP profile image
JWPMP in reply toAzbound

Then reread your post and narrow it down. It does advocate less screening. And your posts seems to minimize the seriousness of a localized low G cancer. They ALL start localized. As one poster said, you don't start out at stage IV.If you have an abnormal PSA and/or DRE, see a genitourinary Oncologist.

Get a second opinion. UCSF doctors offered to get us consult with MD Anderson Houston for additional opinions. If your doctor is resistant, get another one. Do your due diligence before making decisions. But don't fool yourself into doing nothing!

And for gosh sakes don't tell others not to get screened. My husband has no family history and had no symptoms.

Measure twice (or ten times) cut once.

Read some of the excellent suggestions, experiences in these posts...

Azbound profile image
Azbound in reply toJWPMP

Screening can overdiagnose some low-risk tumors that may not have caused harm. LOW RISK..... There are people again getting their prostate to remove for a Gleason 6 if you are not sure what a Gleason 6 is please look it up there is debate in the medical community that it's not even considered cancer it's so slow moving. I would have thought that people would understand this being on a prostate site but I was mistaken.

JWPMP profile image
JWPMP in reply toAzbound

I have researched for four years. You obviously have not, and are missing the entire point.SCREENING DOESN'T OVERDIAGNOSE. SCREENING IS NOT A DIAGNOSIS. Only imaging and biopsy can diagnose. Screening can tell you your check engine light is on. It doesn't tell you to get a new engine, or your battery cable needs replaced. It tells you to get to a mechanic and check under the hood.

No doctor can force a treatment on you. It's up to you to find the best options for your case. And that goes for any medical condition.

I'm done responding. You're not listening.

Being obtuse in this area is dangerous.

Azbound profile image
Azbound in reply toJWPMP

According to the American Cancer Society, the possibility of false-positive and false-negative results from a prostate-specific antigen (PSA) test should be considered when deciding whether to get screened for prostate cancer. Overdiagnosis of prostate cancer occurs when a cancer is diagnosed that would not pose a serious threat to a person's health. Estimates of the degree of overdiagnosis vary, but can range from 25% to more than 80% of screen-detected cancers. I'm also done responding to anybody this is right off the American Cancer society site. Maybe you want to email them

JWPMP profile image
JWPMP in reply toAzbound

THE DAMN PSA TEST IS NOT A DIAGNOSIS....OPEN YOUR EARS!!! THE PSA TEST IS SCREENING. IT'S THE CHECK ENGINE LIGHT.

IT'S YOUR RESPONSIBILITY AS AN ADULT TO SEEK OUT THE RIGHT STEPS AFTER.

GROW UP...

You're obviously not here to learn or to help. I wanted to give you the benefit of doubt.

I'm not actually sure what the heck you're doing here

Other than to tell men who weren't screened in time to save them, that there's too much screening.

Even if this was not for the Advanced group, it's still bad advice for any man.

MEN ARE DYING.

JRLDH profile image
JRLDH in reply toAzbound

I’m one with a diagnosed Gleason 6. The problem with this diagnosis is that while statistics are hard data, none of it is definitive and there’s always this worry in the back of my mind what if they missed a higher grade?

Pathology shows loss of basal cells, staining shows loss of P63, positive for racemase and invasive growth but the cancerous tissue is still “architectural” similar to normal glands in the opinion of the pathologist so nothing to worry?

The latest contradiction is a low Decipher score but “small cell like” in the 90s percentile and several genetic outliers in the neuroendocrine cancer category.

My point: A blanket statement that Gleason 6 is harmless because statistically most men with that won’t develop life threatening disease is not that helpful given that diagnostics are not perfect and ignoring this can be a fatal mistake.

Derf4223 profile image
Derf4223

My $.02 is that smokers, drinkers, the girth-endowed, et al take up most of our healthcare $. Is PCA a lifestyle disease that should be grouped with such? In my case it runs heavy in the family and I was not very girth-endowed until LT ADT.

Everyone has choices and can decide how to make their own choices. The purpose of this site is to provide support. There are bad actors and snake oil treatments abound. However, with prostate being only second to lung cancer-related deaths for men, I am glad that I took steps to care for myself, my family and friends, as well as sharing my experiences with those here. Men, myself included, are notorious for not seeking healthcare for issues until they require more advanced treatment. Preventative care is absolutely important, but some of us are predisposed to what genetics gives us. Let's be kind to each other and show kindness and respect. There are many on here who have loved and lost many people due to waiting and not taking action. Your choice is yours and mine is my own. Healthy wishes to everyone in the coming new year!

Azbound profile image
Azbound in reply toLiveLongAndPropser

This article that was posted was talking about Gleason 6 and 7 that have been treated with surgically removing the prostate. No one was talking really about higher gleasons. Some people here don't seem to understand but not everybody is a Gleason 9 or 10.

Don_1213 profile image
Don_1213 in reply toAzbound

You don't seem to understand that you posted this in an advanced PCa forum. Bet there isn't one guy here (except you perhaps) who says "Well, dammit I shouldn't have had that test.." but lots of guys here - who say "Wish I had it earlier.."

Your entire assumption that Gleason 6 and 7 people shouldn't have the test is bogus. Exactly HOW do you grade PCa with a Gleason score without a biopsy? Can't be done.

Happily this forum has an ignore feature. Consider yourself ignored. I'd suggest others do the same so we don't listen to silly stuff.

Azbound profile image
Azbound in reply toDon_1213

It was copy and pasted from a prostate site and no I didn't realize that this was for advanced prostate. I thought it was for anyone with prostate cancer. If that's the case then I'll be happy that I'm not in the club. My posters coming from the fact that I'm a Gleason 3 + 4 and they wanted to do surgery. With only half prostate localized and not detected on a psma PET scan bone scan CAT scan or MRI all negative. That's where I was coming from. Not saying people shouldn't get screened or biopsy I did.

mchale profile image
mchale in reply toAzbound

I think you’re scared that you’re not a Gleason 6, you’re trying to justify your 3+4 favorable doesn’t need treatment?How many cores did you have and how many were positive? Go on AS if it’s one core but it all depends on how much % grade group 4 you have.

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