What is our APCa community's take on ... - Advanced Prostate...

Advanced Prostate Cancer

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What is our APCa community's take on the new age 70 PSA screening limits?

Derf4223 profile image
20 Replies

I've been reading about a recent change in PSA screening in England to limit PSA screening for under-70-year-old men to some criteria based on having certain symptoms or at risk.

With such a policy in place, if merely having it run in the family is not good enough, I would have not gotten my timely stage 4 HRPCa diagnosis 2 years ago. PS I will be 70 in 2024.

The notion behind limiting screening is that most PCa is lazy and only needing to be watched.

I was screened strictly due to a God-sent messenger to see a doctor.

If the new rules were in force back than, I shudder to think what shape I and many others here would be in.

We'd all be boning up on survival of APCa if treatment is delayed until we had "symptoms."

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Derf4223 profile image
Derf4223
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20 Replies
NickJoy profile image
NickJoy

I think it is an absolute disgrace to be honest. I know that PSA testing is often an unreliable way to monitor prostate cancer and indeed having low PSA has meant that my husband's condition was neglected but it has got to be better than nothing. Until something better comes along I feel that testing should be in place and if there are false alarms then so be it. Better a false alarm than for even more men to suffer.

Derf4223 profile image
Derf4223 in reply toNickJoy

The new guidelines are being promulgated in I believe the UK where health care is notoriously cheap/stingy. And on the basis that PSA-testing men with indolent PCa of the sort that is not likely to kill them (perhaps just make them very sick?) is causing unnecessary $$$ on screening and treatment. Nurse/doctor/bed shortages, dontchaknow. One wonders what the reaction would be to limiting mammograms similarly.

NickJoy profile image
NickJoy in reply toDerf4223

The whole thing is a big mess. I was thinking the same thing about mammograms - although I wouldn't be surprised if they were the next to go or at least be more spread out!

vforvendetta profile image
vforvendetta

I think it is reckless and dangerous.

OzzieJ profile image
OzzieJ

ec.europa.eu/commission/pre...

This doesn’t add up. The EU has recently issued guidelines to member states for full population screening for prostate cancer using PSA with MRI follow up. This will focus on men UP TO 70. This approach makes sense to me as while this disease is awful for all for younger men it can be particularly devastating. Plus many treatments will get you 10 or 15 years from 70 into to a natural lifespan but for a 50 year old they are going to fall short.

When I spoke to my GP here in Ireland he said the official policy was to discourage PSA testing unless you have symptoms which to my mind is reckless. As we all know once you have symptoms it can often be too late. So I am looking forward to the new EU recommendations being implemented here although no idea how long that will take.

Mrtroxely profile image
Mrtroxely

1 doctor1 Cystotomy specialist

Said I was to young to have prostate cancer at 49 and 1/2.

They even looked at me like I was stupid when saying I thought I had prostate cancer!!!!

I strongly thought it was prostate cancer and wanted to catch it before it spread.

Within a month or 2 and few tests later, Gleason 9 and leaked into my pelvis (and I believe its spread further)

It's easier and cheaper not testing.

It's also clearer testing with psma pet scan at beginning.

But I know lots people know will be buying their own tests for micro blood in urine

pakb profile image
pakb in reply toMrtroxely

Urologist told my husband he was too young as well at 49. His father had Pca AND my husband had symptoms for over a year. He was self catheterizing for over a year, getting UTIs, urinary pain etc etc. They still never did PCA. They did a TURP. The testing of tissue after surgery showed cancer. Scans 10 days later showed spread to multiple bones. They still never did PSA . 2 weeks later we had 1st opinion visit with an MO who did PSA- and couldn't believe we hadn't had one. Crazy. A simple blood test.

Mrtroxely profile image
Mrtroxely in reply topakb

It's left me feeling resentful!That resentment hampers my trust and faith in a system that's supposed to care for me when I need it.

I paid into a NHS system and hoped I get help when needed.

Seem like the current government want to crush this and make people choose private..

I hope you guys are ok.

It's awful at times.

I look at my partner and it's black and white the difference in our relationship and that's just due to 1 part of treatment(hormone) let alone the other crap.

Let's hope we can make as much of what's on offer when it's on offer

pakb profile image
pakb in reply toMrtroxely

We are in the US- so went to 3 oncologists who specialize in prostate cancer after the cancer was found. Since they aren't connected with the urologist that messed up we feel confident in them. I'm so sorry you lost that confidence! I'm worried if my husband has to stop working. We won't be able to afford the medical insurance we currently have. We pay about $30000 per year out of pocket because we are self-employed and not old enough for the US medicare system. Our insurance system here is awful- but I know your system has so many issues as well. Just awful. We are doing well. Meds have changed a lot but my husband has an amazing view on life- which really helps. Hope there's always hope for you/yours and for us!

Mrtroxely profile image
Mrtroxely

To sum it up, it's not a problem if you can't see it.And UK isn't leading the way in many areas at moment, apart from making rich people richer?

maley2711 profile image
maley2711

Here is the article I happened to see today.....

medscape.com/viewarticle/99...

" "Although we believe that early detection of prostate cancer should involve shared decision making, the current approach of determining testing by shared decision making has resulted in the worst possible practical outcome of high levels of PSA testing and medical harm, with minimal benefit and inequity," they comment.

I think what is perhaps overlooked here but not by those who look at this at the population level is the overall results of testing in terms of added years of life for the entire population vs the adverse consequences that can and do result from treatments. But , that is only my speculation, as of course have not actually read the report...just this summary article.

There is still the concern that too many men are being treated in order to "save" one life. Yes , that equates to medical spending, but also a lot of QOL reduction for many men in order to "save" one life.

In the USA, we currently spend approx 17% of GDP on medical!!!

Tinuriel profile image
Tinuriel

I saw that too, and felt enraged. I would have lost my husband 5 years ago if we were following that. I've read that a similar mindset back in 2014 led to prostate cancer being one of the few cancers in the US where deaths are up instead of down. Troubling, to be sure.

MiaAmia profile image
MiaAmia

Horrifying. Because he believed this story the first time 'round (articles published in the early 00s?) he didn't get tested. Diagnosed stage IV with mets, gleason 8. He did have symptoms (hip pain and frequent night urination) but one was put down to a sports injury and the other to natural aging process. If he'd had regular PSAs we might have caught this early enough for curative treatment.

Shall we do the same with other cancers? Let's wait till the lump in your breast is visible rather than do a mammogram? Grr!

TylexGP profile image
TylexGP

I read the article and was pissed off. I think we have come along way in understanding PCA and the medical communities approach has evolved from "cut everything out" to better balance risk management and limit overtreatment; is it perfect no but its better. My PCA would not have been picked up until it was much more advanced. They don't seem to really look at the value of added years vs PCA mortality. Yes its been challenging but its far better then the alternative. I have two other personal examples that skew my opinion. My Father-in-law had Gleason 4+3 that was found due to PCA testing at 72. He chose to do Active surveillance and subsequently after 18 months showed increased PSA and additional positive cores on biopsy and chose 6 mo ADT and EBRT. He is now almost 82 with good QOL and very low PSA. My Dad was diagnosed at 70 with PCA 3+4 and he has been doing active surveillance with PSA testing every 6 months. He has had a follow-up biopsy (MRI fusion) which showed no changes and his PSA has remained stable at aprox. 5.0. His Urologist has said from the beginning if something changes he would recommend RT and not RALP. My Dad is currently 78. My perspective is that there is value in routine PSA testing into the 70's. I know both my Dad and my Father-in-law's QOL have remained excellent despite their diagnosis.

Magnus1964 profile image
Magnus1964

It's not my place to criticize UK health care, but many men are diagnosed in their 70s.

I do think Pca is an over treated disease. Many can be diagnosed and never need treatment. But that's no excuse to stop testing.

Several years ago the American insurance industry tried to restrict PSA testing and they ended up paying more on advance Pca patients.

Tell your authorities to take a lesson from America.

Derf4223 profile image
Derf4223

And now the UK NHS wants to stop routine Covid vaxxing.

carbide profile image
carbide

I had no PSA test given by my Illinois doctor that I saw for 20 years. Moved to Arizona, New doctor gave me PSA test, 12psa, 8 Gleason. Was told doctors cut down or out PSA tests due to too many flase readings.

NUTS!

UJam profile image
UJam

Limiting PSA screening is the entirely wrong way to go. Educating both doctors and men about active surveilance is the way to go. The result of this misguided regulation is to have many men having their prostate cancer discovered when metastasis has set in - not good.

At age 74 my PCP no longer requested a PSA test based upon a USPSTF recommendation. In 2021 I visted a urologist for a BPH problem. At the end of the visit a surprise DRE was performed which lead to biopsy, bone scan, PSMA PET scan and an MRI. Result: PSA 14.5, three spine metastases, one pelvic metastasis along with a Gleason score of 9/10. If only I had had that PSA test every year ...

RMontana profile image
RMontana

Contempt...that is my gut reaction to this article. Know what's going on? Professional envy! PCa is blessed (I use that word carefully) by having a simple blood marker which can alert/ predict/ monitor its presence...I believe the Oncology community is envious of Urology for this...can you imagine? What if Lung, Pancreatic, Kidney, Liver, 'Pick-Your-Organ' Cancers had a simple blood marker? What do you think? How often would these patients be asking for a blood test; dahhhhhh, constantly! Well, that is not 'fair!' Other cancer patients dont have this availability so, argue Oncologists everywhere, why should Urology be any different!

This is the mindset today; level out the playing field! Why should Urology have this 'benefit,' of being able to monitor potential cancer growth, when the rest of the Oncology field is forced into scenarios with a majority of patients who present with Stage 4, fatal cancers! Unfair!!! My wife has MDS, a pre-Lukemia blood cancer...short of a Bone Marrow sample (loads of fun) there is no way she can monitor what is happening with her disease, or when her MDS will turn to Lukemia; its just happens! Then, she has scant time left! In fact, she has been told she has a average of 5 years to live from the date of her diagnosis; maybe more, maybe less...I asked her, 'what would you do if there was a simple blood test that would monitor what was going on with the growth in your MDS, would you ask for this test?' I cant capture her incredulity in words...of course she would JUMP at the test...sooooooo why would men give this up? More important, why in holy heck would Urologists pass this up???

I hope they are totally out to lunch, but I am astonished that the Urology community is toying with this change! Our cancer is 'blessed' with this one advantage. To purposely give it away is madness...my family and I will not be playing this game...heck with them. But let me tell you how I really feel...Rick

healthunlocked.com/active-s...

j-o-h-n profile image
j-o-h-n

Here in the US we're testing young school children if they should be a male or a female or a binary gender....... If they stop age screening for Pca in men (note men) here in the US then we should revolt and stop paying taxes...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/24/2023 5:47 PM DST

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