50 Year old struggling with Active Surveillance vs Surgery Decision

Hi Everyone. I joined the club on Sept 10 this year. What a shock it was. Since then, I’ve spent time trying to put it into perspective and reading… and seeking a second opinion. I’ve read Dr. Walsh’s Guide to Surviving Prostate Cancer and several others. Now I am trying to wrap my arms around this and decide what course of action I will follow. But first, here are my stats: Age 50. PSA before biopsy: 2012 = 0.68, 2013 = ??, 2014 = 2.25, June 2015 = 4.6, July 2015 = 5.17. 12 core biopsy on Sept 10, 2015 found 2/12 cores positive (volume 2% and 10%). Gleason 3+3=6. On Oct 26, I had a Prolaris genetic test performed on my biopsy which returned a score of 2.7 on the new scale (equal to a -0.3 on the old range of -3.0 - +7.0) which places me in the less aggressive category for low risk patients (16% of patients in the AUA low risk category have a lower Prolaris score).

I have to admit, I did not feel comfortable with my first doctor to treat my prostate cancer, the one who performed the biopsy. But in searching for a second opinion, found a doctor I feel very confident is the right for me. He is the top urologic oncologist in the Portland area with approx. 2000 robotic surgeries performed to date. I am very data/research driven so felt comfortable when he openly shared his insight and performance statistics with me. Due to my current low risk status, my doc says I am a candidate for Active Surveillance. The problem I am having is at the age of 50, with my projected life expectancy of another 30 years, I’ve been told I will need to have some treatment performed eventually. This begs the $64,000 question: Why would I want to pursue an AS strategy when I know I’ll eventually need treatment? Why would I take the risk of the cancer increasing and potentially escaping the prostate? In addition, believe I have a higher probability of recovery after treatment now vs when older. I understand the incontinence and impotence risks are real. But at what cost do I delay treatment to avoid a 2% risk now? I am interested in your insight on the matter. Especially those of you who are near 50 and facing similar risk factors. Thanks.

Welcome to HW, sorry you need to be here.

It's also possible that you'll never need treatment. A true G6 is never likely to extend beyond the prostate and possibly may never cause you a problem. The research shows that a grade 3 cell never turns into met so it will remain organ confined.

The point behind AS is to delay treatment and the nasty side effects for as long as possible. Trust me here, you don't want the SEs or the trauma of surgery unless it's needed to save your life.

Another point, surgery isn't your only option for treatment. Radiation in it's various forms, beam, seeds can often knock out PC without the same effects as surgery.

Finally, AS is a treatment plan. "Active" is the key word. You're not doing nothing. While on AS, you're carefully monitoring and with each new checkpoint asking the question, "Is it time for treatment."

Even if AS only buys you a few years, you want those years. I'd give anything to have avoided radiation - even just a few years would have been great. If I had been given the choice, I would have done AS without reservation. Sadly in my case, there was a g4 cell and a bit PC very close to the prostate margin.

Hang in there,
Andrew

Totally agree with Halbert - it is the mental aspect that influences most. I just had to "get the beast out" and no amount of "you may never need surgery" could quieten down those inner voices. It is not an easy decision and we're all different. You have no huge need to rush.....and I honestly did try to convince myself of that....and failed.

Rowen, welcome to our Reluctant Brotherhood. I'm not 50, I'm 65, was 64 when i was diagnosed and had surgery. But thought I'd chime in anyway. (i'd give my left nut, or my prostate, to be 50....oh, wait)

I'm with Halbert and WeCan Do This, its largely a personal decision on what you can handle. Like We Can Do This, i needed to "get it out, NOW". I just knew i would have a tough time mentally with AS, IF i was a candidate (which i might have been depending on whom i talked to).
I think the psychological aspect of AS is often underestimated by many. At the same time, there is a lot of "overtreatment" of low risk cancer. So its a tough call.
The good news is with G6, and low volume, the world is your oyster - you will be fine whatever decision you make.

Good luck and keep us posted!

Rowen,

You are making two wrong assumptions:

1. You are assuming that your cancer will inevitably progress so that you will need treatment eventually.

2. You are assuming that while practicing AS, the cancer will metastasize, so that you will miss the window for a cure.

Both major AS programs (Sunnybrook in Toronto and  Johns Hopkins) have been running for almost twenty years. In both programs, the majority of the participants did not need any treatment. As for those who did progress to the point of requiring treatment, almost all were treated successfully. The Johns Hopkins program which is more stringent than the Sunnybrook program (it accepts only very-low risk patients such as yourself) has not had anyone die from PCa during the almost twenty years it has been around.

 

turpT1a said...
........... The Johns Hopkins program which is more stringent than the Sunnybrook program (it accepts only very-low risk patients such as yourself) has not had anyone die from PCa during the almost twenty years it has been around.

And considering the possible- maybe even likely- SEs of some treatments, that would tell me all I needed to know if I was back in the decision making time and also qualified for AS. I mean, if it was me. But people vary.

Mark1960 said...
I've been following these forums on HW since I was diagnosed with PCa back in June. It has been very informative to say the least. I am in the same situation as you are (very low risk, G6, 1 core out of 12 was <5%). I have researched all the alternatives and keep coming back to RP. I actually have the RP scheduled in 2 1/2 weeks.

I am like some of these guys that are responding that I didn't want the mental drain of knowing that the beast resides in me and dealing with all the "what if's" that would stay on my mind.

However, I'm torn since I also don't like the SE risks either and know that there will be some loss of something going forward. But if I know that the PCa is gone for good, then I think having a piece of mind outweighs the SE risk.

Believe me, I have gone over this a lot and still think of the alternatives even though I have the date set. I wish there was an easy answer.

I was very unsure of what I was doing as I was being rolled down the OR hallway. Except, with my G9- even though I was not sure which treatment was the exact right one, I did feel like I couldn't waste more time with my G9 and 10.9 PSA. Ever since I had it done I have regretted it, especially since I got my "no cure" path report. Probably the main reason for surgery barely edging out RT: that I could know it was a cure if it was contained as the surgeon "felt" it was. But it wasn't. So, with my positive margin, I could have had the area surrounding the prostate irradiated, probably giving me better odds of getting it all, and probably with lower (maybe much lower) SEs. (much better odds SE wise IMO, but, no guarantees with any of it). In retrospect, I just don't know what I was thinking. But, emotions often cloud every attempt at logic. It is a tough decision, or can be.

Mark1960,

You wrote:

However, I'm torn since I also don't like the SE risks either and know that there will be some loss of something going forward. But if I know that the PCa is gone for good, then I think having a piece of mind outweighs the SE risk.

 

 

Unfortunately, you don't know that the PCa is gone for good. If you did, you wouldn't need any follow-up PSA tests.

As for peace of mind, ask Pratoman (as well as almost everybody who participates in this forum) about the anxiety he endures every time he undergoes a PSA test.

Rowen2015 said...
But first, here are my stats: Age 50. PSA before biopsy: 2012 = 0.68, 2013 = ??, 2014 = 2.25, June 2015 = 4.6, July 2015 = 5.17.

You know, in some respects you only had one PSA reading above normal. Meaning that the June and July testing was so close together that even if the 4.6 was caused by simple inflammation, waiting only 4 weeks would in many cases not allow enough time for it to calm down. I would certainly have waited a minimum of 3 months.
Then, if back down under 3.5 or 4.0, you need not have even done a biopsy.
Wondering why the doctor rushed ahead with a biopsy.
You might even get another psa in a couple months to see if the 4.6 or 5.17 were true readings.

My psa jumps all over the place. One was 7.5... another 5.7.... the last one under 3.5.

Yes, the biopsy did find something, but if they drag guys off the street they'll find lots of prostate cancer that need not be found.
Then again, you are only 50...

Rowen2015 said...
I understand the incontinence and impotence risks are real. But at what cost do I delay treatment to avoid a 2% risk now? .

Where do you get the idea there is only a 2% risk of incontinence and impotence?
I'd like to see the doctor's definition of what he means for each of those SE's.

It is well reported that the patient's definitions are far different than that of many doctors..
Especially the definition of a "usable erection".

Bottom line is that if I were in your shoes, I would give this decision process a good long time...
Keep reading and getting more comfortable with the information..
I'd say take a minimum of 6 months to a year to make any decision. In the mean time, after a few more months, get another PSA test.. See if a drop back under 4.0 or below won't calm your nerves and allow more comfort in possibly doing AS.

Tudpock, I noticed that too, about the experienced surgeon suggesting AS. We don't hear that very often. Rowen, we've all been there, and it really does sound like you're taking a rational and balanced approach. Might I suggest taking your wife to your consultations, if possible. Having a second set of ears to hear what is said (and have her take notes) is so, so valuable.

As a counterpoint to BillyBob's comment about surgery: highly experienced cutters generally report much better side effect responses than average. When I asked about AS, my surgeon said, "we could do that if you like, but I suspect you'll be back here in a year and we'll be having this conversation again". With my G7 post surgery pathology, I suspect he was right. He also said, on the subject of SE's, "Given your current good general health, and no current issues with ED or incontinence, while there are no guarantees, you've got a 90% chance of making trifecta within a short time" And he was right.

Never mind that I focused on the 10% in the weeks heading up to surgery.

A true G6 is, by definition, not a cancer that needs to be removed or cured. So far your dx shows that you are very low risk and not needing invasive treatment at the present time, certainly not surgery. In my opinion AS is best while you do a proper study of all the available treatment methods by going to each specialist for opinions. Surgery for you at this point is the very definition of overtreatment and subjecting you to the highest risk of significant side effects. Many other treatments are as good or better than surgery for cancer control and cure, with much less in the way of side effects.

By taking your time you will get the benefit of several more PSA tests to continue to establish a trend that will help the doctors determine whether treatment is needed. As to risk, the averages for surgery indicate that about 35% will have a significant degree of ED and or incontinence. Be very careful before taking on these risk factors. Various forms of radiation particularly High Dose Rate Brachytherapy and SBRT reduce this significantly. Besides, by waiting to see whether the cancer really needs to be treated, there should be further improvements in treatment methods that will reduce the risks even further.

You state that you are data and research driven. Then get to work and do a proper research job. So far you have read a few books and talked to two doctors of the same specialty. In my opinion that is barely a good start. You have much more research to do before making decisions. I would visit with an AS specialist, and at least three different radiation oncologists. One should be a seeds expert, one should be an HDR Brachytherapy specialist, and one should be an SBRT specialist. You will probably not find anyone that truly specializes in each, nor should you let one specialty speak for a different specialty. Get the information from the "horse's mouth".

A great starting point for HDR Brachytherapy is the website www.cetmc.com by Dr. Jeffrey Demanes the father of HDR Brachytherapy. He and his associates have been using HDR since 1981 and he heads the department at the UCLA Medical Center. There are excellent Prostate clinics in Seattle that are among the best in the nation using permanent seeds (LDR Brachytherapy). Another member, TallAllen used SBRT and he can point you in that direction to West Coast specialists. Interestingly, he has recently stated that he should have done a better job at investigating AS a preferred method meaning he probably didn't need to treat the low risk cancer he had.

Relax, get better informed, help your wife to better understand the nature of your diagnosis, and take your time researching. It has often been said that the low risks are over-treated. Don't risk being one of the many low-risk men that found the cure was far worse than the disease.

Hi Rowen

All of the advice you have received thus far is sound; you are a great candidate for AS and your ability to cope psychologically only you can answer. As Pratoman said "you can always change tracks off AS if you choose"... you cannot change tracks after surgery, it's a binary event. Many here would consider you lucky because you qualify for AS and sadly many do not or were misinformed by their Uro's.

I have just walked your path myself with a 10% G6 finding. I have chosen AS, I have the mind for it and frankly even a month without side effects is worth it to me, if I can get a year, 5, 10 or 15 it's all upside to me. IF or when the AS needle twitches in the wrong direction I'll be all over it like a cheap suit. Even then surgery will be bottom of my list, IMHO for me at least, it's an outmoded and draconian solution with a horribly under-reported side effect profile. As has been said, there are MANY other options to consider, as and when the time comes, and who knows what NEW treatments may be available or better proven in the future; focal and immuno therapies and possibly even 3D Haptic DaVinci surgery being among them.

If you're 50, just like me, you're not ready for diapers and you probably enjoy sex. I would hold on to what you have for as long as a cadre of wise healthcare professionals say it is prudent to do so.

On that note... 'cadre' I say this because you HAVE to triangulate opinions, you simply cannot trust one voice (including mine), infuriating though that statement is... it's just true. I have a close friend who had a RP at Mass General (he regrets). He made an observation "I had a cross-disciplinary meeting at MGH, they had ALL the experts there; surgery, brachy, IMRT, AS, you name it... it was great! Within about 2 minutes I realized I was sitting in a room with a bunch of salesmen".

Finally, mpMRI is your friend in the hands of a good radiologist/reader thereof. This mode of detection is starting to become the mainstay of good AS programs and is highly sensitive and specific toward higher Gleason grades, e.g. beyond G6. With PCa being slow moving and G6 being considered 'well-behaved' a good AS program with mpMRI will catch things in good time to act in the vast majority, VAST majority, of cases. I have had two very wise Dr's say to me within the last week, "we are starting to trust 3T mpMRI more than Trans Rectal biopsy. We're calling it Magnetic Surveillance."

On the recovery at 50 thing... OK, yes, younger is always going to be better BUT if you are fit and healthy you'll still do very, very well if you have to treat after 5, 10 or even more years of AS. If you're not fit and healthy... well you just got your wake-up call!!! I would WANT those 5, 10 years...

Bottom line is "what is important to you and what balance are you comfortable striking?"

I'm kinda passionate about this because I just went through these EXACT conversations, panic attacks, sleepless nights, tears, throwing up, tantrums, frustrations and finally... peace that I had heard all the arguments and seen a path that fits ME not the establishment.

I shall end with a new piece of information to the forum that may provide you some comfort... now this IS MY CASE, not yours and not advice... but it helps contextualize. I had my mpMRI read by Johns Hopkins, they said "you have a lesion, we're going to biopsy it". It was benign, they found G6 in another random core. They said nothing else. I had my MRI read by a pioneering Radiologist in PCa, here's what he said:

Your MRI was diffusely abnormal throughout the left peripheral zone on the enhanced images but it looked more inflammatory than cancerous as the other sequences in the MRI study were essentially normal.
It is not surprising to find a 10% Gleason 6 lesion in one core biopsy sample in a man of your age.
This is likely a spurious finding and I would recommend that you simply follow with MRI and PSA tests (every year and every 6 months respectively). The positive core probably represents non significant cancer as nothing of note is visible by MRI.

I had not told him that my prostate is regularly raped by a 1200lb quadruped... that's the inflammation part right there, he got it on MRI.

Everything in life is a bell curve of course...

I would say 'good luck'... but with low volume G6, and having found this place and these remarkable guys... you're already lucky dude!

I like what John T has to say here.

In my case (and I'm probably weird in this respect), I have made my peace with death. That's not to say I want it to come soon at all, I still have plenty of living and loving to do, but when it does come I am comfortable that I've made the most of my life and everything from here on is a bonus; I'd rather live those years as actively and sexually as I can, even if it shaves a few off the end; which the evidence says AS won't.


Where's TA when we need him?