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Prostate cancer is never an emergency

SPT
Posts: 40
Joined: Aug 2017

This is from Duffy Myers Prostapedia, October 2017:

 

So then men should definitely ask their urologist how the imaging information might change things before the imaging study is even ordered?

Dr. Cooperberg: Absolutely. You should never order any test—imaging or otherwise—that is not going to change your management, not going
to change what you do. Otherwise, there is no point in doing the test.

If your doctor doesn’t have an answer to that question, should you find another urologist?

Dr. Cooperberg: I wouldn’t get the test. I would get another opinion. Prostate cancer is never an emergency. You can always collect more opinions.

I think very few people realize that.

Dr. Cooperberg: I know. That’s a point we have to make over and over again.

Cancer is frightening.

Dr. Cooperberg: I know, but everyone needs to realize that we use the “C” word for a lot of things that can happen in life. Pancreatic cancer is on one end of the spectrum and prostate cancer is at the other end. It’s very uncommon that prostate cancer needs to be treated within days, weeks, or even months.

You have the leisure of educating yourself.

Dr. Cooperberg: There is always time to collect a couple of opinions. These are permanent, potentially lifechanging decisions. It’s much worse to end up regretting your choices for decades than to spend some extra time getting educated.

 

(Bold emphsis added)

JayAur's picture
JayAur
Posts: 33
Joined: Aug 2017

PSA is on the rise after years of quiet, following Radical Prostatectomy.  Both MD and oncologist agree that a bit of watchful waiting will not change the treatment or the outcome.  Doubling is a trouble sign, but a spike would be a different matter.  I’m in a holding pattern currently...and here to get the maximum amount of information as well as views from others who have ’walked the walk’.

ASAdvocate
Posts: 116
Joined: Apr 2017

Great advice, but far too many newly diagnosed men realize this, or are counseled on the need to research and not jump into the first option that is proposed to them. 

SPT
Posts: 40
Joined: Aug 2017

I am not sure that I can agree that "far too many newly diagnosed men realize this."  Perhaps I am misunderstanding what you meant.  In particular, how can it be "too many" men told to consider carefully?

The interview contains this exchange:

"Dr. Cooperberg: I wouldn’t get the test. I would get another opinion. Prostate cancer is never an emergency. You can always collect more opinions.

I think very few people realize that.

Dr. Cooperberg: I know. That’s a point we have to make over and over again."

bold empahsis added.

While some doctors certainly do make that point, I've met literally dozens of men who were stampeded into RP after getting a biopsy with a few cores of Gleason 6.  They weren't told about AS, or the fact that they could take some time.  The urologist who did my biopsy told me I MUST make a decision between RP, radiation, or brachytherapy in 2 weeks! AS wasn't mentioned. Luckily I had already learned enough to spot that lie, and confirmed it with second and third opinions.

The most outrageous case I personally know about was a man with a single positve core of Gleason 3+3 along 10%. His urologist told him that this was so urgent he didn't have time to get a second opinion.

Now he is divorced, impotent, incontinent, and miserable.  He regrets ever getting the PSA test, and its hard to blame him.

 

That segment of the interview in the OP was between two well-known urologists.  This isn't alternative medicine or radical departure from the standard of care.  Taking 6 months to ponder something that will almost certainly change your life forever seems like a good idea to me.

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JayAur
Posts: 33
Joined: Aug 2017

Hi SPT...I think ASAdvocate was really ttying to say ‘too few’ instead of ‘too many’.  The rest of his comment indicates that.  We never can have too much info. when dealing with a life event like cancer...any one of its many forms.  My concern is that it is extremely difficult to separate the wheat from the chaff, and the Internet has compounded the problem.  Whenever anyone asks me for my non-medical view I point them to sites like this one, Mayo Clinic, etc.  But even at places like this, you have to realize you are hearing personal opinions from those with a problem; very few ‘happy results’ spend their time telling others the good news.  Nothing wrong with that...but any user looking for information has to factor that in.  At least that is my humble opinion.

SPT
Posts: 40
Joined: Aug 2017

Ah, I see now.  I think you are right, ASAdvocate meant to say ‘too few’ instead of ‘too many’.

I should have figured that out myself.  Lupron brain  is my excuse.

Separating wheat from chaff is indeed the problem, and it extends to medical journals, doctor's opinions and beliefs, and forums and web sites.

Therre's a good, short article about the solution: critical thinking.  It turns out you don't have to be a genius. 

(Critical thinkers) think rationally in a goal-orientated fashion, and a disposition to use those skills when appropriate.  Critical thinkers are amiable skeptics.  They are flexible thinkers who require evidence to support their beliefs and recognize fallacious attempts to persuade them.  Critical thinking means overcoming all sorts of cognitive biases (e.g., hindsight bias, confirmation bias, etc.).

Why do smart people do foolish things?

Worth the read, especially for people facing tough decisions like everyone here.

Thank you for the assistance.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

I was taught to be careful of the "quantifier" words as early as elementary school:  There is virtually never a case wherein the word never fits reasonably.

26,000 men die of PCa in the US during an average year. At some point, it was an emergency for them.  I have watched two die personally, and had another relative die of it in his early 50s (diagnosed in his mid-40s, treated at MD Anderson, Houston; that is, the best in the world).

I tend to err on the side of caution, and over my years at CSN, which began with severe, advance Lymphoma, I formulated two slogans of my own. Both are in response to the various truisms that one hears all the time when dealing with cancers.

One is I'd rather have side-effects than have cancer, and the other is "What is the 'quality of life' if your dead ?"

The men I watched pass would have rather had E.D. or incontenince or whatever than knowing they were drawing their last breath, and about to leave their loved ones forever.

max

CC52
Posts: 103
Joined: Nov 2013

There's good basic advice that we all need to be reminded of every so often. Thanks for offering it to the forum.

SPT
Posts: 40
Joined: Aug 2017

Thank you for the kind words.

foamhand
Posts: 79
Joined: May 2016

The majority of the time, people are diagnosed with the slow growing Pca with low to moderate Gleason numbers and these people may not be in a "emergency" situation. However I was one of the unlucky 5% that had a deceptively low PSA (7.1) at diagnosis of Stage 4 Gleason 4+5=9 that had already spread beyond the prostate and was no longer operable or locally treatable. I had regional spread to bone and lymph nodes. I would call this an EMERGENCY! I started Lupron HT right away thru a clinical trial with another drug and so far it is arrested for now. I would think that in cases like mine, it would be an emergency to keep the Pca from getting to the spine or any further spread period.

Also, being involved in a clinical trial, I am required to get blood tests every 6 weeks, a checkup every 90 days and yearly CT and Bone scans to monitor progress. These seem completely logical and necessary tests to have done regardless of treatment.

ASAdvocate
Posts: 116
Joined: Apr 2017

Typing "too many" instead of "too few".  Glad you figured it out.

Foamhand makes a good point about the five percent or so who are diagnosed already in need of immediate treatment. Certainly, the "never an emergency" theme does not apply to him.

But, was that 7.1 psa a first psa ever, or were there others previoulsy that would have caused suspicion?

 

foamhand
Posts: 79
Joined: May 2016

My PSA over the prior few years were lower. 3.8 in 2007 but doctor at the time didn't believe in the PSA accuracy. 2 years ago I had a 4.1 and a different doctor was concerned so he said lets check again in 6 mos. that's when it almost doubled to 7.1.

ASAdvocate
Posts: 116
Joined: Apr 2017

Foamhand, Obviously, you prove Dr. Cooperberg wrong, at least for the five percent who are most critically affected.

Your case shows the difficulty with giving general advice as dictums. I tend to advocate against overtreatment of low risk men. BUT, my advice can be very wrong when matched against your diagnosis. This thread illustrates why there can be no absolute opinions on PCa.

Good luck to you.

lmered
Posts: 7
Joined: Sep 2017

While most of the men diagnosed with PC may not be in an emergency situation delay can be disasterious.  Four of my Uncles were diagnosed with PC, one had a RP and lived a long life, the others all died of PC.  In my case eight years ago during a routine physical the doctor noticed that my PSA had gone from normally under 2 to 4.  He was concerned that it had doubled in one year.  He sent me to a urologist who did a biopsy and determined that there were no cancerous cells just some atypical ones.  30 days later they did a PSA again and it had increased to 20.  Went to Dr Patel in Orlando and had another biopsy which showed a gleason of 7.  Even Patel said that I had some time there was no rush for surgery.  I went ahead and scheduled surgery withiin the next month.  When the biopsy came back after the surgery it was 9.  I was one of the few that had a particularly agressive type of PC.  Had I waited I would not be writing this today.  Also a good friend of mine waited a little too long and passed away a few years ago.  While the overwhelming majority may have tiime don't bet your life on it.  

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JayAur
Posts: 33
Joined: Aug 2017

We are all betting our life on “It”.  Applaud you winning your bet.  

Darn shame that it comes to that...but there you go...it is a crap shoot for any of us.

IMHO

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Joined: May 2012

Your story is remarkable, Imered.

My own PSA had been doubling about annually for 3 years.  I asked my primary care doc, and he said to ignore it, and his further suggestin was to "just stop having PSA tests completely."  He is from the popular "PSA and biopsies are overused" school of though.

I made my own appointment with a urologist who recommended an immediate biopsy. It came back positive at a probable Stage I, but the pathology report after RP about 3 weeks later was a Stage II, with a lot more tumor involvement than the initial biopsy had shown.

My Gleason was never high, but if I had not acted, I don't know when I would have finally been diagnosed.  I had bad problems with urination and sex before surgery that were attributed to BPH.  And, as luck would have it, the symptoms of BPH and PCa are often identical.

You obviously have a genetic propensity toward the disease, so warn any sons or nephews that you may have to be vigilant,

max

 

lmered
Posts: 7
Joined: Sep 2017

Dr Patel and his staff advised my son to begin PSA testing at age 30 as a result of my family and personal history.  I'm not sure he is taking it as seriously as he should.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Imered,

For a famous urologist to recommend annual PSAs at 30 really proves the point of how critical it can be in families with obvious, strong genetic tendencies.

In my personal experience, the youngest man I ever knew with PCA was a "cousin-in-law" -- no biological relationship to me at all.  But he was diagnosed with advanced disease in his mid-40s, and was deceased by around 52 (I do not recall exactly).  His treatemnts were at MD Anderson, Houston, so he did not pass due to inferior doctors !  As you undoubtedly know, men who get PCa very young tend to have much more aggressive disease.

My female cousin by whom I got to know him had breast cancer at about 38, cured via lumpectomy and followed by IMRT.  Quite near Orlando also, at Lake Mary.   But after Angelina Jolee had a preventative mastsectomy, my cousin got the BRCA 1 & 2 genetic tests, and tested positive for BRCA 1.  This yields an astonishing 87% probability that the woman will develop aggressive breast cancer . Her oncologist said that the fact that she had already had breast cancer young gave her a nearly 100% liklihood of recurrence with aggressive disease.  She had elective double mastsectomies and a hystro also (the gene also threatens the ovaries).

She acted in a radical manner, but out of necessity.  She was menopausal, so the removal of the ovaries was mostly irrelevant regarding hormones or lifestyle. And surgical cosmetic implants today are very advanced.   A radical threat demands vigilance. 

I wish your son heath from due diligence,

max

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Here's an article from a man who was diagnosed at 35; there are men who are diagnosed at still earlier ages. At any rate, in high risk situations a man needs to start monitoring at an early age to determine trigger points...These men need to live a heart healthy life style..........Additionally a correlation has been show between prostate and breast cancer, so woman in the family are also more likely to be diagnosed, and also need to be closely monitored

https://www.huffingtonpost.com/gabe-canales/young-men-get-prostrate-c_b_732296.html

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