Active Surveillance worth it?

What percent of men on active surveillance will be upgraded and require treatment? Is it worth the wait with numerous MRI’s and biopsies. Then the constant DR visits and constant thinking about the issue at hand.

[kevinf]

I'm coming to the end of my first 3 years stint in AS and have pondered this point a lot. However, having spoken to guys who've had the op, I am definitely going to stay on AS as long as possible.

[EdinBmore]

I'm sure there are data about how many men with PCa go on to have treatment at some point. I think I recall reading 60+% but don't quote me.

Obviously, this is a highly personal decision driven by many factors - age, status of one's cancer - how aggressive and pervasive? risk acceptance - a little Russian roulette, anyone? Other "comorbidities"? Knowledge, competence, skill of docs you've chosen. And, so on.

So, a difficult decision to make. For me, dx in April 2011 (3+3, two cores, less than 15% "involvement," PSA 4.0ish). I was not of the "get it out of me" reaction. Hopkins docs said that I was perfect candidate for AS. Mine appeared slow growing. On-going monitoring which included numerous blood draws and DREs, biopsies or MRIs every 6 mos, genetic testing (81% chance of low risk cancer), and so on. Yes, a hassle.

By July 2018, my numbers had gotten worse and Hopkins docs recommended treatment. For whatever it's worth, I chose IMRT, brachy boost, and ADT. Was never a fan of RP - side effects seemed far more damaging than side effects from radiation - and results of radiation vs. surgery appear to be comparable (in fact, depending on what research you read, radiation seems a better treatment option than RP for many. But, that's a topic for discussion for another day.)

What did I get out of being on AS? Was it worth it? Despite the routine monitoring hassles, I still had use of "my parts." I had a sex life (was fairly active in that department) and the knowledge that, perhaps, I might die with PC vs. die from PC. Yes, I felt it was worth the wait/gamble. Probably stating the obvious when I say that my life changed - dramatically - during and post treatment. Despite my reading/research, I had no real sense of the change that treatment would bring. The ADT was the biggest hurdle for me; all the negative side effects were devastating (I'm envious of men who do not experience ADT side effects).

So, much for you to ponder. Good luck with your decision. Whatever you decide, it'll be "right" for you. Don't second guess yourself and don't beat yourself up with anxiety (easier said than done, yes?) about your decision. You'll find lots of support here. Lots of very well informed and kind people here.

EdinBaltimore

[Hidden in reply to EdinBmore]

thanks for such a comprehensive response. Best to you as well.

[Hope4Happiness]

I've been on AS since August 2017 -- I was diagnosed with G6 (2 cores, both less than 5%). I'm currently 55 years old.

I am very happy with my AS choice. I'm on a strict protocol (e.g., PSA every six months, DREs every six months, biospies every three years, MRIs every 18 months, etc.) -- all subject to change based on results.

I view AS in six months intervals. It could end at any time. But, the further down the road I get treatment, the better the treatment will be. For example, if I can hold off treatment to even 2025 -- who knows just what great advances will be available at the time? Think about the leaps that have occurred even since 2010.

That said, AS requires a very specific mindset. When I first considered AS, my mind went to all the usual places -- "What if (this)?!" "What is (that)?!" "What id (this) and then (that)?!" It becomes an endless useless spiral.

One tool that is very important is "mindfulness" -- member @Tall_Allen told me about years ago. It helps to keep your mind focused on the present and what you can control. AS is supposed to maintain your physical quality of life after a PCa diagnosis -- but, you don't want AS to end up destroying your mental quality of life. Mindfulness is important because it helps you to "enjoy and appreciate life right as it is happening."

Here is some good information about recent findings regarding AS:

urotoday.com/categories-med...

[aceace12 in reply to Hope4Happiness]

i am very similiar to your diagnosis, but 3 cores but the same geason 6 less 5% but its been 18 months ,,all my PSA 's haev been under 4, my doctor now wants to do MRI then fusion biopsy ... he checks my PSA every 3 months ....is this close to your same protocol ?

thanks

[Mufj]

Treatment options a very personal choice

First my understanding is that overall 50% eventaull require treatment in 10yr and 60 to 70% in 15 yr, where you may fall in this are based on stats of youre disease

You choose AS you can choose to start treatment at any time. So start this way and investigate treatment option including when and the basis for starting treatment

You delay treaments till later available treatment improve-lot of work happening here

I you neeed to make sure you are in a good program that includes regular biopsy,DRE,PSA and MRI. Aconfirmation biopsy should be done in one year after that one may be done from once a year to every 3 years. PSA and DRE done every 6 Mo I prefer PSA every 3 Mo(gives me better variability info).

I am 3 yr into AS with biopsy and MRI anually,PSA 3Mo DRE 6Mo and expect to soon spread biopsy to every 3 year. currently age 69

Also remember if you get treatment you will stil need montioring to make sure recurrence does not occur

More info bout youre stats would help other give comments specific to youre cas

good luck with youre choice

[Umpire20]

I have been on Active Surveillance for Gleason 6 PcA since diagnosis at age 59yrs in November 2006!

[LIRJO]

5 years now. Needed a Turps op 2 years ago. Showed benign samples. Life is almost normal. ( ask my wife ). I am 65 and I barely think about it Last PSA. less than 4

[Billikan in reply to LIRJO]

I've been on AS since January 2004 at age 61. Lots of PSA bumps in the road all of which came back to baseline with some antibiotics. The only things I didn't anticipate is that my prostate continued to grow from ~50cc to 97cc the last time I had and MRI. (MRI showed tumor size of 6mm). The BPH adds a whole different dimension to AS. At age 78 I can't tolerate antibiotics as well as I could 10 years ago so any kind of infection is very problematic. Those are the confounding things that weren't on my radar screen when I made the decision. It's not a picnic but I'm a lot better off than quite a few of my PCA. brethern.