HealingWell
Search Close Search
☰

What If What You ’Survived’ Wasn’t Cancer?

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/21/2013 1:03 AM (GMT 0)
The latest flavor of the day Fool's Folly. The media and their 'suppliers' just have to be the message don't they?

Your prostate cancer is doing nothing..except trying to kill you. That is the only outcome, if left alone.

Posted 8/21/2013 1:19 AM (GMT 0)
I don't really care much for her statement, either. Perhaps she's suggesting that not enough money is available for research because it's all being spent on treatment. Sure, there is legitimate concern about overtreatment, but I don't know how genuine she is about it.

One thought has always struck me on this issue; we talk about the mortality of PCa, but how much morbidity from nonlethal metastases are we willing to accept in order to avoid the morbidity issues associated with overtreatment?

I was willing to accept the risks associated with my surgery to do what I can to avoid the unpleasantries of possible metastasis. Nothing is 100%, but we take what we think is our best shot.
Posted 8/21/2013 1:24 AM (GMT 0)
One question remains in my mind about this debate and each similar debate preceding it. Why is it necessary to stop routine PSA testing in order to achieve a reduction in treatment of indolent prostate cancers ? This question may sound simplistic in view of the recent debates, but it is, in my view, not a simple question, but rather involves the complex issue of what patients and their doctors do with medical information. Information is power if appropriately used; lack of information can be deadly.
Posted 8/21/2013 1:31 AM (GMT 0)
Tim,
I would seem easy to prove that knowledge is power. And I think it is still and will always be. It's the quality of the information that makes good and bad decision choices.

It's not a good plan to stop screening. That's not what I advocate. Since we have an imperfect test with huge error margins, I think we should focus on screening where we know screening is more and most effective.

Tony
Posted 8/21/2013 1:34 AM (GMT 0)
You know, Tim, the recent suggestion for PSA testing retrenchment is starting to sound a bit reminiscent of the "Don't ask, Don't tell" policy to me.

We won't have to agonize over a decision to treat it if we don't know you have it.
Posted 8/21/2013 1:36 AM (GMT 0)
I don't always agree with Casey, but I've told him that I respect his perspective...

This, however, is the crux of the over-treatment argument and stated succinctly.

Frankly, I believe it is a disservice to men like you, XXXXX, with advance disease for all the wide ranging types of what we today call “prostate cancer” to be blended (“averaged”) together under one heading/name. It “sugar coats” it for your case (makes it not seem so bad), and makes the low-risk cases sound much more serious than they really are. In a post almost a year ago, I wrote (replying to someone else) a similar comment:

On the one hand, the "averaging" pulls-down awareness of the seriousness of the aggressive, potentially deadly versions of PC. This is illustrated through uninformed comments along the lines of referring to PC as a "lucky" type of cancer. Although this high risk PC only affects a small percentage of the total number diagnosed with the disease, there is nothing "lucky" about it for the roughly 25K men who will die in the US from PC or their loved ones.



On the other hand, the "averaging" also irrationally elevates men's "cancer" fears when they are diagnosed with a tiny case of low-risk PC which should be treated (in the words of one world-renowned PC expert) similar to how one monitors & treats a case of dandruff.



The reality is that PC is among the most common and least lethal malignancies which yields a large population of survivors, but not all are survivors. Language is important. Should both ends of the PC spectrum be given the same disease name? There are plenty, and a growing number, of the PC experts in the world who say this is a disservice to men like you.

But at 41, turning 42 at treatment, even with my confirmed G6, I'd have still had the surgery. Overtreatment or not. Had too long a life potential to chance an error... or progression to a more difficult to control grade. When those nuances of diagnosis become more concrete, I'd be even more willing to agree with Casey. Until then he'll have to suffice with wink

I get where you're coming from.
Posted 8/21/2013 2:05 AM (GMT 0)
Tim,

I was watching the morning news show, and there was a segment on HPV vaccination, and how ALL early teen girls MUST BE SCREENED and vaccinated.

Save the young T&A, let the old useless guys die in a hole.

Anybody got a problem figuring out my position?
Posted 8/21/2013 2:13 AM (GMT 0)
Casey, you said back to me:

"In your own words, think, then articulate, why is there a “disservice” to high-risk men who were “lucky” to (just) get PC? "

Can you re-phrase what it is you are asking me? The way your worded it, I am not understanding what you are exactly asking me, almost sounds like a trick question, which I am sure that's not your intent.

I will answer anything if I understand the question.

david
Posted 8/21/2013 2:37 AM (GMT 0)

142 said...
Tim,

I was watching the morning news show, and there was a segment on HPV vaccination, and how ALL early teen girls MUST BE SCREENED and vaccinated.

Save the young T&A, let the old useless guys die in a hole.

Anybody got a problem figuring out my position?

Exactly
Posted 8/21/2013 2:39 AM (GMT 0)
You know...we talk about this overtreatment / screening topic over and over again with very few suggestions on how to fix the problem. I think the latest study on Finasteride is huge and addresses a lot of the overtreatment.
Posted 8/21/2013 2:41 AM (GMT 0)
I have constantly mentioned real physical steps, but few others have added anything specific. There has to be solutions that both answer the true element of the problem without putting men in need at risk.

david
Posted 8/21/2013 2:53 AM (GMT 0)
The problem is they can't determine if a G6 is just a G6.
There are many thousands of G6's that are G7-10 after examining under a scope.
Science can not accurately say all you have is a G6.
Do you want to risk life with AS?
Posted 8/21/2013 3:08 AM (GMT 0)
I'm just saying that screening should continue to happen, but Finasteride makes the PSA more accurate...biopsy the ones with a high PSA...but you've reduced those that need biopsies and you've reduced treatment big time.


"..Now, follow-up results from a study of 19,000 men show that taking finasteride makes the PSA a far more accurate test — by making it more likely to detect cancers that really need to be found, says Eric Klein, chairman of the Cleveland Clinic's Glickman Urological and Kidney Institute, who wasn't involved in the new study.

Finasteride, a pill, is sold commercially to treat the benign prostate enlargement common with aging, under the brand name Proscar, as well as to treat hair loss, under the name Propecia. It's also available in low-cost generics.

Among men getting screened with the PSA, those randomly assigned to take the drug finasteride for seven years were 30% less likely to be diagnosed with prostate cancer, according to the study, funded by the National Cancer Institute.

Perhaps most significantly, men on finasteride were 43% less likely to be diagnosed with a "low-grade" prostate cancer — the kind most likely to lead to unnecessary treatment, the study found.

That suggests that about 100,000 men could be spared a prostate cancer diagnosis each year, says Ian Thompson, the study's lead author, director of the Cancer Therapy & Research Center at the University of Texas Health Science Center at San Antonio...."
Posted 8/21/2013 3:13 AM (GMT 0)
James,

If AS is done properly, you can't really say you are risking your life. For starters, you will continue to get regular PSA tests and DRE's. Any unreasonable rise in your PSA, will initiate additional biopsies, and if warranted, even saturation biopsies. So if that G6 is not what it seems, there are "safety's" in place to monitor and catch.

In the mean time, the person under a properly monitored AS program, can buy months, if not years, of normal QOL without the risks of ED, incontinence, and other side effects, until needed, if ever at all.

I don't see there being much risk with undergoing AS, if one has the right starting criteria, the proper doctor to work with the AS, and the right attitude of the patient.

All the hell and pain and misery I have been through in my PC journey, was never (so far) because of the cancer itself, but because of treatments for my cancer.

If I had met the criteria for AS, trust me, I would have jumped all over and been more than happy to have continued a normal life.

Just something to think about, not saying you are wrong.

David
Posted 8/21/2013 3:24 AM (GMT 0)
Jerry said...
"I'm just saying that screening should continue to happen, but Finasteride makes the PSA more accurate"

I spoke to Ian Thompson, the papers author, about it last week about it. It is indeed very good news. But we enter the same conundrum. How do we identify these patients and when. The PCPT trial only tested 55 and up patients.

The problem with 5ARI drugs is that they make PSA LESS accurate. That is why there may be more high volume advanced cases in the trial arm. But the news from Ian is that has not led to more overall mortality.

That is still very good news.

Ian stated to me that 55 may be the right age to start a man on a finasteride preventive approach and 50 in a high risk case. But that he can't say for sure because ~ we need trials to prove it will work earlier.

Tony
Posted 8/21/2013 3:50 AM (GMT 0)
This discussion of the pros and cons of the AUA guidelines is getting eerily Orwellian. (George Orwell was the writer who argued convincing against the manipulation of language in his books "1984" and "Animal Farm"). So let me say clearly what I mean by PSA screening, in case anyone misunderstands: I mean UNIVERSAL SCREENING of men for prostate cancer using the PSA test. I'm for it. Period.
Posted 8/21/2013 11:24 AM (GMT 0)

TC-LasVegas said...


The problem with 5ARI drugs is that they make PSA LESS accurate. That is why there may be more high volume advanced cases in the trial arm.

Tony

That's my take on it, too. It may tend to mask a useful PSA, but I'm not a researcher, so I can't speak to it any deeper than that.



142 said...
Tim,

I was watching the morning news show, and there was a segment on HPV vaccination, and how ALL early teen girls MUST BE SCREENED and vaccinated.

Save the young T&A, let the old useless guys die in a hole.

Anybody got a problem figuring out my position?

LOL. All you old geezers are just being difficult. Shut up and eat yer prunes. smilewinkgrin Give women PCa at the level of their other maladies and I guarantee you'll hear screaming and cursing.

Add to that the recent campaign to screen EVERYBODY born between '45 and '65 for Hepatitis C. You've seen the billboards and heard the propagan . . . er, commercials.

Interesting times. However, I see the rationale for preventive medicine. Give us a vaccine for PCa and we're all good.

The prostate is simply much harder to treat. You have to root that sucker out without damaging everything around it, or burn it out without scorching useful tissue around it.

It's not like lopping off a couple of breasts and going about your business, even if Brangelina made the news for it.
Posted 8/21/2013 11:27 AM (GMT 0)
Two weeks ago, I met a guy in the radiation waiting room who's 80 years old, and just started radiation as a primary therapy.

He said four years ago they found 2% cancer, then 3% the next year, then 4%, and finally 5% so they decided to treat it. He was a bit angry about why they had waited so long, and didn't treat it at 2% when they first found it! He couldn't tell me anything more about his numbers, didn't know the Gleason score, stage, or anything else.

These threads about ODOT came to mind immediately. I told him he had 4 years of good quality of life while avoiding side effects of treatment - that's a big benefit to not treating earlier. I didn't add that it seemed he still probably didn't need treatment, but without knowing anything more it's hard to say. He clearly didn't have a medical background of any kind, and of course I don't either except being a highly curious patient.

Yesterday, my dental hygienist told me her 84 year old father in law was just diagnosed, and was pretty interested in surgery for it! He said he expects to live to 100, so should have the surgery to make sure he lives that long. I told her it seemed unlikely a urologist would do that surgery on someone that age, and a 2nd opinion would be a really good idea.

I'm all for screening, obviously. However, the hardest part is convincing people that waiting to treat will be safe. That's the case that has to be made, and it's a tough sell with the limited diagnostics available, and the way the word cancer freaks everybody out anyway.
Posted 8/21/2013 12:26 PM (GMT 0)
Here we go, again - same argument, different thread. . . .  Been sitting back trying to ignore this discussion, but my nature won't let me do that, so I'm going to that super-useful tool of "copy and paste" and put my two cents worth in, again, from a couple of posts I did in another thread:

You know, this junk continues to amaze me. THE ISSUE IS NOT about OVER-DIAGNOSIS - that phrase, in itself, "Over Diagnosis" is an oxymoron. Somebody - anybody - please provide me with solid, scientific data that correlates the two.

I honestly, truly cannot believe there is even discussion about this - While I personally and completely agree with "Over-Treating" going on - somebody please explain to me how being due-dilegent about testing has anything to do with over-treating.   Sorry to be harsh and to the point here, but if a man makes a decision to be over-treated, then he has made a mistake - and because of that why should other men suffer from not being tested.

I simply cannot fathom this entire series of arguments - I really can't............

 

But at the end of the day I will still stand here and wait for someone to challenge my position on this whole ODOT thing - it is simply not about over diagnosis, it is what each of us does with the information we are presented with - like any other decision in life - the difference being this one is a potentially life altering if not life saving decision, which absolutely demands that I become educated and knowledgeable to make the right decision.

To not avail me of the opportunity to do so, is wrong - and I have yet to hear a counter-point to what my position is.

Posted 8/21/2013 2:41 PM (GMT 0)
yooper, I have been saying the exact same things that you just said, over and over and over again.

the other side still won't answer the simple questions that you are asking here.

they insist on tying the OD to the OT, and for starters, how can there really be OD.

like you, me, and dozens of other have said, it's not getting the dx as being the problem, it's what's being done with the dx that could cause OT, and even then, the numbers on true OT are sketchy at best.

david
Posted 8/21/2013 4:16 PM (GMT 0)
I'm with Yooper and Purg on the "over diagnosed" issue. What is the definition of OD as it relates to prostate cancer? If I try to fit the definition into AUA screening guidelines, is a 55 year old with a low grade gleason 6 diagnosed correctly or is he over diagnosed? What if the man is 45 with a low grade gleason 6, is he over diagnosed? To me the diagnostic of these two men is the same.

I am also curious on how people come up with the number of men who are "over diagnosed". Is everyone following AS considered over diagnosed until such time that they may need treatment, then the same diagnosis they received in the past is change for "over" to "correct".....doesn't make sense.

The dumbing down of PC is already to taken affect, I ran into a guy last week saying the he is not doing anything about is raising PSA because he saw on the news that the doctors are making a fortune on PC and that even if you have PC is not going to kill you, in his words "its the cancer to have".

In my opinion the over treatment issue needs to be addressed with public information, word needs to be put out that PC is a serious issue and that people should get screened. Providing accurate and complete information to those who have been diagnosed and let each individual make his own personal decision on how to proceed. I take exception when some on this site say that most treatment decisions are made out of fear, and that's why screening and treatments should be curbed. I think not enough credit is given to men out there who are faced with PC decisions, I believe many men study and research a lot and at the end decides what is best for them and their families. Why try to take away the decision making process of a reasonable man just because some others act out of fear, educate those with fear.
Posted 8/21/2013 5:42 PM (GMT 0)
norm +1

I still haven't met a single man yet, that was so paralyzed with fear from getting a PC diagnosis, that they couldn't move forward and make an informed decision. Not saying such a person doesn't exist, just saying I have never encountered one.

For years here at HW PC, the mantra has been the same with new guys. The best way to overcome fear is with knowledge. And as a group, we have done an excellent job of helping provide such knowledge as lay persons.

So denying or discouraging screenings. DRE, and biopsies, because it might make some man "fearful" or "afraid" makes no sense. They simply need to be sat down, and educated about their true situation.

And going back to this re-naming business, it just reeks of purposeful deception to me.

david
Posted 8/21/2013 6:09 PM (GMT 0)

Purgatory said...


And going back to this re-naming business, it just reeks of purposeful deception to me.

david

AGREED. I think that's why we all get our hackles up when this issue is raised.

Attempting to curb over-treatment by denying that it's cancer IS deception. I agree with norm's post; educate, don't obfuscate.

As for people talking of this cancer "being the one to have", I've never agreed with that philosophy, either. Yeah, somebody sat me down, gave me a list of cancers and then put a gun to my head and forced me to pick one. Um, no.
Posted 8/21/2013 7:14 PM (GMT 0)
I am not a fan of renaming the disease. But it has been done in the past. Polyps in a colonoscopy were originally considered stage "0" colon cancer but were later renamed as a pre-cancerous condition. Going back further it was cysts that used to be considered malignant growths. Benign cysts do grow out of control sometimes and can kill a patient but they do not tend to grow to other locations. But they were still called cancer at one time.

I don't think it would be deception, but rather in the same light as other things like polyps that could become cancer we could look at G6 T1C cases is stage "0" cancer that may or may not need treatment. I could go along with that and redoing the TNM system has been considered in the past. It could be done that way as other cancers also now have stage "0" cancers where they never did before.

Tony
✚ New Topic ✚ Reply
12