For the Loved Ones of Prostate Cancer Patients


Transcript: 

"This video is intended for the wives, husbands, partners and loved ones of men who may be at risk of having prostate cancer or who have been diagnosed with the cancer. Our aim is to help you help him navigate through what can be a complicated, confusing and anxiety ridden time.

First and foremost... don’t panic! And help him not to panic. The word cancer is scary and the immediate impulse for so many men is to rush to some sort of radical treatment to just get it out of their body. Help him to calm down and slow down. 

Here are some points to remember

80% of men who get high numbers on their PSA test do not have cancer. 80% do not!
Of those who do the vast majority have a form of the cancer that is so slow growing that it hardly deserves to be called cancer.
Related to that is this truism that “most men die with prostate not from prostate cancer”
For those who do have the more aggressive cancer there are an ever growing number of options for treatment. The chances that he will live a full and productive life get better every year

First  help him get the screening right. This is really important. Things are changing in big ways in this area. Let’s say he’s had a high PSA number. Up until recently the typical next step would be a referral to a Urologist who would order a random needle biopsy. That entails removing 12 cores from the prostate with a hollow needle. There’s a real problem here. An estimated 80% of men get biopsies that they don’t need! 3% of those suffer infections serious enough to require hospitalization not to mention other side effects like erectile dysfunction. And one more thing... random needle biopsies are not terribly accurate. They can miss serious cancers.
 
Like I said,  things have changed and nobody needs to be railroaded into the random needle biopsy. If he has a high PSA number here’s a better course of action:
 
●     First get a second PSA test. Labs can make mistakes and PSA can be elevated for reasons other than cancer… things like sexual activity and even riding a bike
●     If the PSA number is still high you have options to see if a biopsy is a good idea:
○     First an MRI. Recent advances in MRI imaging has changed everything. The latest generation of MRI machines called 3 Tesla, or 3T machines enable radiologists to see all but the tiniest tumors. The tumors that they can’t see almost certainly don’t matter. You can find  a list of MRI centers that do “Multi-parametric” testing using a 3T scanner on PCRI.org. Even if you have to travel a bit to get to one, do it. It’s worth it.
○     The second option is a new blood test called the 4K test that can accurately estimate whether he has an aggressive form of the cancer. You can read about the test further at PCRI.org. If the test indicates that you may have an aggressive form of the cancer then you’ll want to move to the MRI.
 
What improvements in MRI imaging mean is that biopsies, when they are needed, can be targeted, right to the suspicious area in the prostate. No more random poking.

Next... help him do research. No matter where he is in the process whether he’s just received his first high PSA number or whether he has been diagnosed with aggressive cancer there are options and you and he need to know what they are.

If he’s diagnosed with prostate cancer he and you are going to have to know more about treatment options than your doctor does. I’m talking about your primary care doctor. Those people are flooded with information and there is no way that they can keep up with it all. They’ve got the whole body to worry about... we’re talking about about one little organ. You’re going to have to educate your doctor and if he or she dosen’t seem like they can be educated... well you might want to start looking for a new doctor. 

A great place to start your research is pcri.org. There is a wealth of information on the site as well as access to a helpline staffed by very knowledgeable people, most of whom are prostate cancer survivors and their relatives,  people who’ve been where you are, people you can talk to.

Next, if he is diagnosed with cancer he might need your help maintaining a medical records folder. Most of us would count on our Doctors to do this but the truth is that when multiple specialists start being part of the picture the amount of information multiplies and the chances of it being scattered and even lost increases. He, with your help, needs to continue to take responsibility here. This folder includes, among other things: 

* A log of all PSA tests
*  A copy of the  urologist or GP’s  notes that give the results of Digital Rectal Exams (DRE).
*  A copy of the Biopsy Pathology Report. 
*  Copies of the radiology reports of any scans (color Doppler ultrasound, bone, CT, MRI), and if available, digital copies of the actual scans.
*  Copies of all information regarding medical history, including any current (unrelated to the prostate cancer) health problems even if they seem minor.
*  A list of all medications and any over-the-counter supplements


Finally, he might need help finding and assembling the right medical team. 

In an ideal world the “coach” of his medical team would be a Prostate Oncologist, a Prostate cancer specialist... a doctor with no particular bias regarding treatment. Unfortunately these doctors are exceedingly rare...probably only 10 or 12 Prostate Oncologists in the whole US!

So, in the real world his Primary Care doc  is almost certainly going to refer him to a Urologist. Now Urologists are surgeons and prostate cancer is the only cancer that the lead doctor is most often a surgeon. So, what could be wrong with that? You’ve heard the saying “when you’re a hammer everything looks like a nail”. Get it? Hammer-nail, Surgeon-surgery. You get it. Be aware, there could be some bias. 

In any case, the coach is probably going to be a urologist so how to pick the right one? 

First let’s look at screening again. If the urologist wants him to go immediately for a random needle biopsy, don’t walk...run! Help him find another doctor. Like I said earlier multiparametric scanning with a 3T MRI scanner is the gold standard. The 4K blood test is also a promising alternative. The random needle biopsy is a thing of the past.

Second, look at the Doctor’s experience. He or she needs to be a prostate specialist. It’s really important. The learning curve for prostate surgery, for example, and should it be required, is really steep. Studies have shown that surgeons need to do 250-300 radical prostatectomies before they reach a plateau when it comes to achieving the the best recovery outcomes in urinary and sexual functions and the eradication of cancer. 

So there it is. You’ve got a job to do. 

You need to not panic and help him not to panic. 
You need to help him become educated and become educated yourself. 
And you need to help him be responsible for his own health care." 

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