Newly diagnosed…things I wish I knew, or that my doctor had told me!

I saw in another thread from yesterday that NKinney posted some facts that I wish I knew back when my PC journey began. If my “patient education” had started earlier, I might not have leapt into an immediate aggressive treatment for my favorable-risk intermediate (3+4) case…and I might still be on active surveillance today, and might never have needed an aggressive treatment + side effects at all.

My doctor never told me about AS, other than brushing it off, and I had no knowledgeable friend or acquaintance, or connection on a social media site like this, to tell me the commons sense reasons that I shouldn’t rush quickly into an irreversible aggressive treatment. I was freaked out because of the “C” word, and I indeed just “wanted it out.” My mistake.

My mistake, but I can see more clearly the meaningful facts that others who are newly diagnosed should see so that they don’t make the same rushed mistake. I think the list from NKinney’s post is worth re-posting (copy/paste) to make it more visible:


Here's some of the key facts which patients should know:

4 to 5 in 1,000 die of PC with screening; they were informed earlier of their disease (known as "lead time bias"), but it did not save their lives.

0 to 1 in 1,000 do not die of PC because of screening (benefit)

100 to 120 in 1,000 false-positives come from screening; most lead to biopsy

110 in 1,000 will be diagnosed with PC from screening; most would have remained asymptomatic for life

2 in 1,000 develop serious cardiovascular events due to treatment (harm)

1 in 1,000 develop deep venous thrombosis or pulmonary embolus due to treatment (harm)

29 in 1,000 develop erectile dysfunction due to treatment (harm)

18 in 1,000 develop urinary incontinence due to treatment (harm)

0 to 1 die due to treatment (harm)

reference: http://www.aafp.org/afp/2013/0215/od1.html

Here we go again.
I give it 20 responses over/under before this thread is locked!

Mel

Tedswife, you are welcome...and welcome to HW. I encourage you to go to the "Newly diagnosed..." sticky thread at the top of the page of posts. Your husband's case sounds like it might be in the intermediate-risk category, but maybe not on the favorable side as mine was. Read the sticky thread for important "step-0" and "step-1" actions to take...


compiler, I would hope you are wrong. I wouldn't have been offended by my doctor if he had pointed out these facts at the time when my PSA test was offered. In fact, and I guess this highlights an important point, I wouldn't have been steered away from asking for a PSA test if he had informed me if this information first...but I might not have over-reacted with the results afterwards.


be cool...

What's the take away from this? Quit the screening and live a life free from the side effects of treatment of prostate cancer?

No, quite the contrary, Almost a 10...quite the contrary.

This info would have helped people like me at the very beginning of my journey. If I was informed of this type of information—as I already said—I would have been much more informed at the time of my baseline PSA test, and probably not over-reacted in the way I did after I got the test & biopsy results. After the biopsy, after the "shock wave" hits you is too late to listen to reason, for those in the favorable risk category like me.

Guys, the point of JackH's post was not about screening. It was about the need and ability to gain more and better information after being diagnosed and before starting treatment. Let's focus on that and leave the other alone as we all know we won't resolve it here and will only end up shutting down a thread that is probably the single most important issue facing men.

What to do after a diagnosis?

As JackH said, he feels he was mistaken relying only on what one doctor told him. He now knows that additional research, more information, multiple opinions, etc. may have led him to a different conclusion and treatment plan. We regularly tell the newbies on the board to take your time, get second opinions on slides, get opinions from other practitioners like the radiation oncologist, go to centers like MDA that practice a team approach, read the New Patient stickies, etc.

We have welcomed a newbie this morning, Tedswife, and she is instantly engaged. So our good advice is working and very valuable for them. Importantly, they will not be likely to repeat the problems of so many that only took the advice of the first doctor they saw.

That is one of the most important aspects of this forum. How do we get it to many more men, is the real question. Personally, I repeat it to my docs every chance I get...my rad-onc, med-onc, urologist, and PCP. For the most part they get it and encourage new PCa patients to join us. I encourage all the members to also do so and frequently. Every once in a while we will make a very positive difference for a family.

But bickering over screening will not help anyone.

Right on, JNF.

Actually, the information I'm talking about would be ok after diagnosis, but MUCH BETTER before diagnosis and at the time of my PSA baseline. aka, an "informed decision/educated decision."

The purpose of an informed decision is not, and never has been, to steer men away from PSA baselining/testing. The well-documented purpose of informed decision making is to capture men's attention about how vastly different PC is from other cancers at a time when the men aren't hit simultaneously with the natural "shock" which accompanies a diagnosis with the big "C."

How many times have we seen first time posters here talk about the shock, fear, terror, etc. they felt. Most talk about how they didn't really hear what their doctor said after the said the big "C." I experienced that, too, because I was not informed in advance with some of the basics of PC. And in my case, and in so many other reported cases, it sent me down the slippery slope...

thanks for your additional clarification, JNF

I just read the "Warrior Down" thread in its entirety and now this thread is like deja vu. Yes it's an important debate and dialectic (see logos post, and yes I am contradicting myself. Webster said they were synonymous). However, whether you are new to the forum or old, you have made your point (saw same article three times!) for and against screening and this bickering has to be a turn off for new members as well, IMHO. I'll vote for lock it now and put $10 on the mods.

Okey dokey, then I will cast a vote for education...period.
Patients and medical providers.
My hubbies dad was discovered having PCa after Gary, so too late for early screening due to family hx. However his symptoms and high PSA should have gotten him a referral.
Dr. was uneducated and so we're we. Do I think that three yrs of cancer running around in his prostrate left unchecked made a difference in his prognosis...well Hell yea!!!!
Now I know more than I need to know, but I'm much better off, IMHO, for having educated myself so I can try to educate others.
So, having stated my opinion, I will say I am a proponent for MASS screenings from age 40 plus at every venue available, kinda like cholesterol checks.
Let's pretend PSA tests are a being conducted like cholesterol. Test number one establishes baseline, unless it is over 2, which means go see doc. Medical providers know what to do with the results because they have been educated (in theory....How many people are take statins unnecessarily...Yes over treatment with potential neg SEs). Moving on...more men are educated because they are given printed info, plus media and their medical provider. After all, the opportunity to be tested would be everywhere, targeting the masses, so education is happening too.
Then comes the question off bx vs no, and of course there is the G6 tx vs the G 7 to 9. With or without mets? Oh crap, I might get overtreated.
On the other hand, do I take a statin when I have a high cholesterol reading, or do I get educated about LDL and HDL? Possibly retested, monitored, second opinion.
And my final opinion on this subject. The medical community needs to come up with a new label for low-risk favorable outcome, because the "C" word just freaks everyone out. I'm betting that's as much the impetus behind over treatment as much as lack of education. It can't be that hard. Professionals love labeling stuff. How about a prostate "event"?
On another note, I just lost $10 to Jim...sleep well!
Beth

I unfortunately got caught up in the screening problems, false positive, overtreatment, etc. thing and skipped a few years. I have a friend in our service club that is in the medical measurement equipment business and he preached about the problems and how we shouldn't be screened. He was influential... I was negligent.......and I missed a few years.

Then my wife had breast cancer for the second time and demanded I have a physical. In the blood work, I was screened by my PCP without my knowledge because I met the profile they screened. The next day (Friday) he calls me just after dawn....Jack you have cancer.....Steve, how can you tell.....your PSA is 59.7........holy ####, what do I do......don't worry Jack, I have secured an appointment with the urologist for Monday, take it seriously and, oh, by the way, have a fun weekend!

I favor responsible screening and want effective education.

The big problem for me was the government panel that recommended against screening. After I saw that I used it as my gospel and I didn't want to hear anything about PC education!

Jack,
You appear to be making the assumption that all drs are an "informed shared decision making" kinda person who are themselves informed. Gary's GP appeared to not have enough information to deal with the test results, much less provide education prior to testing. His medonc is a paternalistic kinda guy. Gary's all good with that. I'm not, but I'm also not the patient. And as TA said, that doesn't make him a bad doc or Gary a bad patient.

Distrust anyone (over or under 30) who slings statistics around like manure in a barnyard.

"There are three kinds of lies: (1) Lies (2) D_amned lies and (3) Statistics"