The Unending PSA Controversy

GeetarMan said...
So thank you all despite the bickering. I actually enjoy the passion and the back and forth.

It seems like helping low-risk newcomers (population statistics show us this is the largest sub-group of newly diagnosed) would be a unifying force here, not a divisive one...

 

Jack,
Unfortunately low risk and what to do with it is by far the most divisive topic in my nearly 8 years here. I was intermediate. My decisions came easy when I arrived here.

Overtreatment is a reality, a scary reality. I blame it halfway on doctors pushing lucrative treatments to patients they know are already scared. And I blame it on irrational thinking of patients scared out of their mind from receiving the dreaded "C" word. Put those two factors together, and you have lots of treatments.

For years here at HW, and I go back to 2008, I have "preached' that if men with low grade, Gleason 6 cases, simply weren't even allowed the option of having an unneeded invasive treatment, i.e. surgery (the most invasive choice of all), then that alone would curb a lot of the over treatment.

Going back to the original topic, and I am glad this thread was started, and the quoted doctor's piece makes a lot of good sense.

The PSA test is not the problem, nor is the biopsy is one is truly warranted, it's what done after the initial information is found. That is what lead ultimately to the overtreatment.

We have men here, right here at HW PC, that never ever needed to be treated, for the lowest levels of PC that they were diagnosed with. Plain and simple, yet all of them will try to justify (human nature) why they chose or were recommended to be treated. And so many of them bare the scars of having an invasive treatment, i.e. incontinence issues and/or ED. Serious side effects that they could have entirely bypassed had they not insisted on being treated.

When AS was first discussed here, many were opposed to the very term, just like (and I am sure Tud remembers way too well) that when "seeds" started showing up here - many argued against that form of treatment. Now "seeding" is a very common primary treatment method. And I don't here people talking trash against it.

Many now automaticially include a reference to AS being considered to newcomers. That is a big step, as I believe Clock mentioned, here at HW PC.

I still don't go for the "renaming" scheme. A G6 is still a genuine cancer, but it doesn't mean all cancers need to be treated. AS is such a wonderful alternative to having invasive treatments. For the few men where AS proves faulty months or years later, in most all cases, the same person will have access to the very same invasive treatments as they would have at the beginning. I see AS as a win-win, more amazed that anyone with a single core, <5%, Gleason 6 diagnosis, would even want to assume the risk of side effects and complications, for such a minimal, non-harmful cancer. Fear is a terrible basis to make such a drastic decision in my opinion.

And I speak that from personal experience, as having survived 4 bouts (so far) of dealing with potentially dangerous cancers. I only wished I had the criteria with my own PC to have entertained AS, I would have said yes in a single heartbeat.

We preach that knowledge is good when dealing with PC, still true, but the knowledge gleaned from PSA testing and biopsies is not the root cause of the overtreatment crisis, but when knowledge gained is falsely applied as an excuse for unneeded treatment, then that knowledge essentially was wasted.

Just my 2 cents, I am not remotely qualified in any medical sense, other than being married to a very experienced and good looking red headed nurse, lol.

David in SC

Regarding the re-naming of low-risk prostate cancer...here's a suggestion that I recently read about:

"The Un-Cancer," which is conceptually similar to 7-Up, the Un-Cola.

Extra points to the first HW member who can correctly identify the PC specialist who originated that suggestion...

davidg said...
if we accept that men with a G6 act irrationally we logically also have to accept that the medical professionals surrounding us advising us to act, which is almost all of them, and the apparatus behind them, is not only a rigged game, but also organized crime.

I think the above statement is logical.

No, that's not logical...at all.  There is no dependance between the "if" and the "then," and neither is correct.

davidg, I struggle to understand any point you are trying to make.

When G6s are no longer consider a cancer ... I will sell short the makers of DaVinci and Cyberknife ... a real game changer for the industry.

davidg said...
Peter - if we accept that men with a G6 act irrationally we logically also have to accept that the medical professionals surrounding us advising us to act, which is almost all of them, and the apparatus behind them, is not only a rigged game, but also organized crime.

I think the above statement is logical.

I am not ready to accept that.

You know, David, that's kind of disappointing. I was trying to build a bridge. I am actually mostly on your side and was trying to see how far we can go, you and I, in seeing the problem of overtreatment and maybe thinking about how it can be addressed. I did not say patients were irrational, I said that some of the language used to describe their disease to them was confusing, and some of them might be making rational decisions based on imperfect information. "Rational" doesn't mean correct. It means well-supported by the information available.

Nor was I suggesting that surgeons are trying to mislead them. I think that surgeons try to lay out the options as clearly and fairly as they can and let the patients decide. They don't use the word "prostate cancer" for low-risk, low-volume Gleason 6 disease to try to 'scare' their patients. That's the only word they have. They try to explain Gleason scores and the unlikelihood of metastases and they hope it gets through. I talked to two surgeons. One recommended against surgery but said he'd be glad to do it if I wanted. The other -- my urologist who I finally chose for the surgery -- made a strong pitch for AS then told me he couldn't ethically make a recommendation one way or the other. I think most urologists will admit that too many low risk men choose treatment but don't see what they personally can do about it without either lying to the patient to make the surgical option sound more frightening than they believe it to be, or taking the decision away from the individual patients to try to make some sort of AS "quota" they have in mind.

I'm not trying to trick you. There is not slippery slope, no gotcha if you budge from your safe position. Work with me here.

"Unfortunately low risk and what to do with it is by far the most divisive topic in my nearly 8 years here. I was intermediate. My decisions came easy when I arrived here."

yet when you began your anti-PSA campaign I asked you point blank if you thought you had been overtreated and you said "I honestly don't know".

ed

In addition, you don't understand my answer.

I do not know if I was overtreated. I had RP. My PSA went to zero. I had additional therapies adjuvant I may not have ever needed. That's overtreatment if my disease would have never returned.

Purgatory said...
I see AS as a win-win, more amazed that anyone with a single core, <5%, Gleason 6 diagnosis, would even want to assume the risk of side effects and complications, for such a minimal, non-harmful cancer. Fear is a terrible basis to make such a drastic decision in my opinion.

This is exactly my position. I think men with this set of stats (this would be me), regardless of age should absolutely not have an invasive procedure. As I've stated, my uro urged me to schedule a surgery right away, he even said "within 2 months". Now here I am 7 months later with a PSA at last testing of .5 after having no treatment. I think I would actually be somewhat nuts to undergo any invasive treatment at this juncture and I would advise any man in the same situation of the same.

I guess I should add that Docs with patients with these stats should absolutely not even recommend any invasive treatment. If you were told you did have a small amount of non-aggressive cancer but advised by your doc to take a more "wait and see" approach it would go a long way to end this over treatment problem. And I think that there is no denying that over treatment is a problem.

Guitar Man, quiting your job at the car wash and waving your mama goodbye may have worked for you, but it wouldn't work for me.

We are all different in what we will tolerate. I wouldn't assume for a second that what I chose must be what you should have chosen and don't need you to do so to validate my decision.

David, respectfully, your tone seems a bit unnecessary. I would not expect anyone to need me to validate their decision. I was just offering my opinion. I'm not offended by, nor do I consider anyone's opinion validation or repudiation of my decision. It kind of is what it is.

We're all on the same side here, just trying to help and offer advice best we can. If a man came to me and asked me what my advice would be given the same or similar stats as my own, my advice would be AS. That is all.

FWIW, reviewing your stats, and your age, and the final biopsy, I think you probably made the best choice and no matter what, it was the choice you were most comfortable with so for you, seems like it was the right choice.