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45 year old...2nd biopsy results in...AS questions

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Posted 1/22/2019 5:20 PM (GMT 0)
First - thanks for everyone who contributes to this forum. Amazing community!

Im 45 - and all my tests are looking better than when I was diagnosed 16 or so months ago. I am leaning heavily toward AS still but would love some input. My history should be in my signature...but also note Ive been very healthy this past year eating and working out and drinking less. I have two questions

1) For those on AS...after your second biopsy what was/is your plan/your dr reco on the frequency of each AS type followup... psa/dre/biopsy/mpmris...or anything else?

2) Ive seen some data on "younger guys" suggesting <50 is slightly better off going with AS than the overall population. However my Dr is leaning ever so slightly to have me consider SBRT due to my age....and his concern is that with longer times recommended between psas now (and less biopsies than they used to require) there might be a higher chance of some outlier event happening. He just thinks the data is so much less for my age relative to the >60 crowd some of the smaller studies might not be worth relying on as much. There is a lot of time left in my life ...I hope - perhaps an increase in outlier events due to projected longevity?

Thanks for any thoughts or studies/experiences/thoughts!
Posted 1/22/2019 5:51 PM (GMT 0)
Your results to date look good for AS to me but that ship had sailed for me so I am not the best resource. The PSA, MRI, and Gleason sound ok for AS. You might consider a genomic test after your next biopsy to get that factor added to your data set for future AS evaluation or treatment.

You are right that the under 50 crowd is poorly represented in most studies since most cases are older men. Don't know what that means though. Could be better to be diagnosed early in age but might not make any difference in the long run. The push seems to be on AS to avoid over treatment otherwise there would be no AS. If any PCa showed up at any age, doctors would just remove or zap the prostate to be safe, skipping the AS step. I am sure someone will know if and what benefit there is to early treatment at a "young" age vs. AS with your stats. Seems you need another factor to push you in that direction to me.
Posted 1/22/2019 7:14 PM (GMT 0)
A link for you to read:

https://prostatecancerinfolink.net/2016/07/07/can-a-man-be-too-young-for-active-surveillance/

While I am thirty years older than you, SBRT or proton therapy would be my choices if treatment became necessary. There is no known reason why they would not also be appropriate for you, but we simply don't have studies beyond 10 years at this time.
Posted 1/22/2019 8:43 PM (GMT 0)
Thanks for the links. Seems to me that every month now the medical advances to fight all cancers are accelerating. I'm not sure I can ignore that fact if the AS vs treatment debate is anywhere near a coin flip with virtually identical longer term outcomes. I could get unlucky with treatment and I could get unlucky on AS. But with AS I have over a 50% of getting 5+ years of new technologies and data on my side. Doesnt that alone tip the scales considerably?

Here is the bottom line and why Im not 100% committed to AS yet - Why do insurance companies pay for treatment for someone who is a great AS candidate? They would save a lot of money by not treating 55% (or close too it) of those AS patients? Or, perhaps its because the follow up AS biopsies and mris are of equal cost or more?!
Posted 1/22/2019 10:46 PM (GMT 0)
Hi Kev,
I would just encourage you to continue to be vigilant.

Biopsies are often accurate but sometimes things are missed. It has been said on this forum when explaining a biopsy... Think of your prostate as loaf of raisin bread, and the raisins are cancer. IF you were to stick a knitting needle in it, sometimes you will hit the raisin(cancer) and sometimes you won't. Doesn't mean the cancer is not there or that there isn't a more aggressive cancer that was not biopsied.
When I was biopsied 12 cores were taken which was the protocol. I don't know if that has changed but I do know men who have had considerably more.

I guess if I were you and IF my PSA started to increase I would opt for another biopsy and more cores taken. I believe its referred to as a Saturation Biopsy.

My PSA went from 2.54 to 3.04 Two cores 3+3 and one 3+4

All the best to you.
Posted 1/22/2019 10:47 PM (GMT 0)
KevC, The costs of the MRI's and biopsies are less than the surgery or radiation sessions. But, maybe over 10 or 15 years, the might be a savings to immediate treatment,

I will guess that they continue to pay for surgery and radiation for low risk men because they always have. Even before 2005, when men with Gleason (2+3) were routinely sent into surgery!

While the medical associations recommend AS as the default treatment of low risk men, they also include surgery and radiation as acceptable alternatives. That is probably because of pressure from surgeons and radiologists, who pay their dues. And, there are also many men who are mentally incapable of dealing with having cancer inside them. Not an insult, just how they feel. That's reality, and probably why the insurance companies pay for those treatments.
Posted 1/22/2019 11:57 PM (GMT 0)
With Medicare, I always hear the phrase “so long as it’s medically necessary as determined by a medical doctor” or something similar when asking about coverage. So long as the procedure or approach is approved by the government, the doctors make the call. Insurance companies have always avoided playing doctor from what I have seen but do not hesitate to quote policy limitations when applicable.
Posted 1/23/2019 2:53 AM (GMT 0)
To me it would seem that AS continues to be the best option if/until that PSA starts upward and a confirm BX shows some movement in the wrong direction.

As a SBRT guy I highly recommend that you look at it if/when the time comes to pull the trigger on TX.

Even if your doc's go for longer periods between PSA tests I personally would opt for the 90 test even if I had to pay for every other one or 3 out of 4 for that matter. They are pretty cheap and easily gotten even without the big time docs ordering them. Even though I would suggest the 90 day schedule I will caution not to get too worked up over a slight rise in one or even two successive tests. The idea being a steady trend not the bouncy bouncy to be found all too often with PSA testing.

If you decide to buy the tests yourself, find a conveniently located lab and start testing there to get a baseline set up. Understand that the numbers are NOT comparable to any other lab "directly" but the trends would be.

May you never have to do any other TX than AS.

Roger
Posted 1/23/2019 4:46 PM (GMT 0)
As someone who is over 50 (53) and on AS, I believe I made the right choice (see my stats in signature), but I advise everyone considering AS to understand there will be that period of "getting your head around it" because the natural human instinct is: "What, there's some cancer in there?! It's time to cut/radiate as soon as possible!"

I want to be on AS as long as possible, but I can't view it like that. I have to take it in six-month stages. In a sense, I'm just looking ahead to my next PSA/exam/or specific test and then will evaluate at that time.

When I first decided to pursue AS, one member here (Tall Allen) recommended practicing "mindfulness," and that was some very valuable advice. It really does help me to "enjoy life as it is happening" because on AS, sometimes your mind can get overwhelmed with situations such as: "OK, what if xxxx happens in a year?!" "OK, what if the docs say xxxxx in three years?!" "Oh man, I'm scheduled for an MRI in 18 months -- what if it reveals xxxxx?!"

We are on AS to keep a certain quality of life and stay free from physical side effects for as long as possible, but we don't want AS becoming a treatment that just becomes loaded up with "psychological side effects"... It defeats the purpose of why we chose it to begin with.
Posted 1/24/2019 12:43 PM (GMT 0)
Kev,

Given your stats it would seem that Active Surveillance would be a good option for now. The key is the word Active. While it is possible or even likely that your cancer will grow the statics show that it is not necessary to seek invasive treatment at this time. Most A/S programs require regular PSA testing and DRE, (the one I'm one is every 3 months for both) and a follow up biopsy within a year. (I am going for my 2nd biopsy next month after stretching it out to 18 months based on my PSA results.) After that we will continue with the quarterly PSA testing and DRE, and a biopsy in 2 or 3 years based on PSA results. Each A/S program has some differing standards but they seem pretty similar. I think that if things change and you need to seek out a more aggressive treatment the PSA test will indicate that and the Uro may do another biopsy at that time to verify what the PSA indicates. While no plan is perfect this should give you time to live a life free of side effects and still allow you to seek a curative treatment when necessary. This also gives you the added benefit of more time to research your curative options and for the science to develop and refine better treatment options.

Best of luck,
Perry
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