A Plea for AS

It is ok to vent. I know I am lucky but at times I sure do get frustrated as well. I hate cancer!

Thank you for venting. As one of those guys on AS I feel somewhat encouraged by your post.
AS has its own problems which would take too long to go into. Your post could help a lot of people.

...and then there are people, like me , for whom surgery , even at a little higher risk, would practically be out of the question. My occupation, sheep shearing and farming wold be essentially over if I had to be out 8 weeks..let alone not lifting anything larger that 5 lbs. for 3 weeks..I do that 100x a day. Even if I was "continent" after a few weeks...of course lots of guys say that they are continent...well, with a few stress dribbles...yeah, for me about 100 times a day again. So,yeah, it's a real crap shoot all right...and as Prato mentioned "everyone has different priorities"

Cap,
You are doing this community a great service by posting this. Every time I see 'borderline' guys get talked into surgery by an overzealous uro, I cringe. I wish every newly-diagnosed guy could read your post before giving into the 'get it out' mentality.
Bless you, Brother.

This massive over treatment of low risk Pca is insane. If every man over the age of 50 were given saturation biopsies most would come up positive. But Pca is not one size fits all. Only a few strains are lethal. Of course I'm excluding those with like gleason 9 and maybe 8. I've been around long enough where AS is not considered foolish anymore but panicked knee jerk reactions to cut it out now!!! are beginning to. I've seen way too many guys who come here have radical surgery and their lives soon revolve around urinating be it for month, year, or the rest of their life who may have never had to diminish the quality of their lives if they just took a deep breath and thought rationally about treatment. I was lucky finding a less invasive treatment with no lessening of my quality of life. But even with my success if I was diagnosed now I'd be on AS. There have only been a few with like one core gleason 6 with 5% insist on radical surgery then have major post surgery problems but in a few years there will be none. For this insane over treatment of low risk PCa will be looked on like lobotomies of the last century. Meanwhile my TFT which is much better than radical surgery is only available in a few locations. The reason why? Not enough money in it. So also think about how your radical surgery is needed financially in our insane healthcare system and factor that into the diagnosis and the rush to surgery many men are pressured into. Someone has to pay for Million dollar plus DaVincis.

My cautionary response here is to be careful. Depending on how I read some of this, I could see serious criticism of my decision to not go the AS route. ALL of the medical experts I talked to, and what I read in Walsh, suggest that I am a borderline candidate for AS anyway, with 3 positives and 1 iffy core all on the same side. The two different Uros, as well as the RO I talked to about it all said the same thing: "A year from now we'll be having this same conversation"

Yes, explore all options, and get the best information you can. Yes, weigh the very real risks to all options. Choose the one you and your family will find easiest to live with if it goes badly.

In the end, there is no one size fits all solution.

Halbert, I don't think any critism was meant at all, certainly not by me. You have made your decision and took the time to do so. The whole idea was to get newbies to slow down and do the due diligence, especially on the low risk DX's. I've been questioned on my choice since day one, but again my choice and well thought out for my circumstances and needs.

Cheers, Doug

It's been 6 years of AS for me. Still comfortable with my decision. Thanks Healingwell for helping me make that decision.

No doubt in my mind that the OP, and everyone else who has posted in this thread has the best of intentions in what they say, and I am not disagreeing with or wanting to debate, the points made by anyone . I want to be clear that I believe that and don't mean to or want to appear like I'm denegrating anyone else's opinion. A lot of you are way more knowledgeable and experienced than I.

With that in mind,I have to say that I think we are at risk of giving some new guys the impression that they would be insane to treat after a G6 or even a G7(3+4) biopsy. That sort of overstatement will serve some new guys well, if they are predisposed, and a good fit for, AS. But it will serve others poorly. We need to choose our words carefully.

I've said before, and I'll repeat, that I think sometimes the temperament of the individual is underestimated in its importance in the decision making process.

Also, the idea of AS with a G7 (3+4) is a relatively new idea. And What if that G7 is upgraded in surgical pathology to a G8?
Dr Epstein, after studying my biopsy pathology, 3/12 positive , all G6, told me "you are not an optimal candidate for AS"
On the other hand Dr Scholz, in LA, in a phone consult, recommended that I consider Active Surviellance DEPENDING ON the results of an MRI and IF an Oncotype DX test showed a high probability of non aggressive disease. So it's just not that simple.

For sure, there is a lot to be desired in patient education in the medical community, fault of the medical profession in my opinion. Newly diagnosed guys should be getting this education from their diagnosing Dr, not some BS about doing whatever treatment that dr is motivated to do.

Again, I stress this is not a criticism of anyone here. I am humbled by the knowledge of many people here, obviously TA and also others.
It's more of a comment that we should be careful in not overstating the case for one approach vs another.
Halbert and I made the right decision for ourselves (you did, halbert) . Others with the same biopsy results might make a different decision, maybe taking the advice of Dr Scholz. And all of us would have made the right decision for how we want to live the rest of our lives.

Sorry to be so verbose.

Michael_T said...
BTW, the other day I did a life expectancy profile that was part of the PC nomograms (at MSK?). It said I has a 15% chance of dying in the next 15 years from a cause other than PC. That sounds about right for a mostly healthy 54-year old that could stand to lose 15 pounds. Considering how low the chance most of us have of dying from PC, it's odd how we jump on life changing treatments for it.

That's a bit of an eye opener, thanks for posting it. /webcore.mskcc.org/Survey/TakeSurvey.aspx

Pratoman,
I don't think that anyone questions that you made a good decision for yourself. You did all the good self-assessment as well as outside research before arriving at what is right for you.

I really don't worry about overstating the case for AS. The first doctor we all see is a urologist, and if we are favorable risk, he will always recommend surgery. Some mention other options, but most press their bias. The fact is that most patients never get further than visiting with the first urologist they speak to. It takes an effort of will and of knowledge to get beyond that, and I think that as responsible patient advocates, we should be vigorously encouraging that. There has been an epidemic of overdiagnosis and overtreatment in the US, with some good results, but mostly with very sad results, like the OP. There's a lot of inertia to overcome.

Not being an "optimal candidate" does not mean one is not a good candidate. The optimal candidate for any therapy, including AS, is the man who has the smallest amount of low grade disease. Monitoring technology has really made great strides in the last 5 years, and a new generation of radiologists is coming up to speed in using them.

- Allen

CapHuff:
You are very similar to me: 3+4=7 at diagnosis and 3+3=6 after surgery. The big question that still haunts me to a degree is: Obviously the doctor who saw my (and yours ) biopsy saw some "4"s. and we all know how nasty 4's can be. So when anyone is downgraded we always have to wonder: Who got it correct; the doctor doing the biopsy or the doctor doing the pathology? Obviously, the doctor doing the pathology has the entire organ to examine and they often find more agressive cancers while examining the whole specimen, but again; where did our "4's" go? I was luckier and had immediate urinary control (I still squirt a little while laughing too hard) but had total ED for 15 months. I was very "down" and used a VED, Cialis daily, and bimix injections and I fortunately can now have sex without any pills or injections (I am 3.5 years post surgery). I never thought that I made the wrong decision even when I thought that sex was over for me. Please remember that it was even more likely, our cancers could have been upgraded based on statistics. That is what I see as the problem with AS- only a small portion of the prostate is sampled. In my case, I wanted that cancer out.

I guess that is human nature to say "what if". You and I were very lucky regarding the cancer and there is probably a 96% chance that we will never hear "recurrance". My sex life, pleasure derived, and penis appearance have taken a "hit", but I simply say to myself: "I did what I had to do knowing the imformation that was available to me at the time". In my case, I know that I couldn't have mentally handled AS. And don't kid yourself, alot of men can't! We both took the SAFEST route regarding cancer. A full cure is more important than sex or a little dampness. And don't forget, many men reaching middle age start to have major ED and urinary control issues without having had PCa surgery! Try not to beat yourself up. Playing the "what if game" any of life's decisons will drive you crazy.

Good Luck,

Bill K. from NJ
Age at diagnosis: 58, PSA 3.3, free PSA 21% Biopsy 3+4=7, 1 of 12 cores + at 30%. Neg. DRE
daVinci surgery July 2011, downgraded to 3+3=6, cancer in both lobes, 67 grams, 10% involvment.
Now at 62- all PSA tests since <0.015, No major ED, but Cialis does surely help.