Embarking on active surviellence

I am also on AS, have been on AS since Aug 2012. Have done three PSA tests, one Color Doppler Ultrasound, will be getting another MRI (no endo - T2DW). I also asked my Uro to order a Prolaris test, he is still working on it. Colorado monkey was so kind in providing contact info and cost. My Uro has not decided if he is going to do another Bx at one year or not. He is waiting to see what my next MRI is going to show.

You should also google UCSF guidelines on AS. They have one of the most active AS programs around.

Good luck to both of us.

Akai

whats your psa now and have you had the slides reread by pathologist, in top of the line medical center that deals with many, many pca patients. John Hopkins for 1. Not a new biopsy but said Patholigist reading the slides you or doc has on file. .06 is undetectable. A pathologist that does few pca biopsy slide could read that which is not cancer as cancer , just to be on the "safe" side for you, possibly for him/herself. Not cynicism, just prudence in a new medical paradigm.

Tall- that is great info (you are a par golfer-ha/ha), Dr. Bahn (Dr. Lee's former protege' at Crittenton Hosp. from Michigan has become the master from the original master). In one of the PCRI videos Bahn followed a guy whom did his own W.W./A.S and the color doppler clearly showed the areas of increased and new tumor areas, which lead to the guys treatment (his waiting period was somewhere like 6+ years, btw).

My brother got Dx around 9 yrs. ago now and with the John Hopkins-Brady Urology parameters of indolent PCa with his Gleason 6, he has only monitored via psa tests and may be due for a better screening, but thus far seems it was safe and the right thing for him to do. His psa back when Dx was only 1.0 which was super low, but psa is not the best indicator as you can see. Probably a good tip is never get to complacent with PCa, it can be a sneeky sob.

In another unique story my friend did ADT3 as his only treatment (psa was 11.0  2 cores positive would be a Gleason 6 by todays standards, this was back in 1996). Per Leibowitz protocol 13 months, then stay on proscar only.....short story update=  rebiopsied by Dr. Lee with color doppler guiding and no cancer found. He has all these years of everything working (he claims) and could still do about any PCa treatment, if and when he decides.  Back in his day doing ADT3 as primary treatment was very bravish to do.....he is a very happy camper.  I love happy stories.....

Post Edited (zufus) : 6/6/2013 4:16:51 AM (GMT-6)

I hope that AS works well for you, long term even.

I am a big believer in AS for those that are safe to be on it.

That way, you can maintain your quality of life issues for as long as possible.

Will be watching your case as it progresses, perhaps more men over time will entertain undergoing AS instead of going into an invasive treatment that may or may not be needed.

Going back in time, I only wish I had the numbers to have justified AS.

Good luck, sincerely

David in SC

Hi Allen:

There isn't really any reason to do an MRI at all after the first biopsy unless there's suspicion of extracapsular extension. Bone scans are often ineffectually done for men with low PSAs.

Referring to above, I spoke to Dr. Ukimura on Tues (my Uro) and we agreed on another mpMRI? Should I not go through it?

We did the Color Doppler Ultrasound at six months (March 1, 2013) and according to his reprot "no progression". My PSA has been stable (3.16, 3.29, 3.23).

Did not realize that he was trained by Dr. Bahn.

Thank you for all the information, thoughts, advice to my original question. I had not heard of CDUS, so I will definitely check out the method. Given my last PSA level (1.1), I know I can't solely rely on the PSA # or the rate without consideration to the future biopsy results.

My decision to pursue AS was largely driven by the ability to actively monitor my condition, which means the trigger points to active treatment need to be defined. The program looks like:
1. PSA checked every 3 months
2. biopsy at 1 year from initial Dx, subsequent scheduled based on results
3. MRI (or maybe CDUS) at yearly intervals, offset 6 months

Also changed my diet significantly, but that's a whole discussion on it's own.

Thank you again ..... Steve

I have been on Active Surveillance since March 09.

I going for another biopsy next week, two years since the last one. This will be my 4th.

I am hoping for results that will be favorable to continue with Active Surveillance.

Steve D

I'm not part of a formal study at this point, though basing most of it on my care at UCSF. I know there are some long-term studies that UCSF is part of, I just haven't felt the need to be included. Mostly because I want the flexibility to define the monitoring technique (eMRI, mpMRI, CDUS, ....) and especially the frequency of biopsies.

I know the original Dx puts me in a low risk group, but I am still putting my arms around what that means and how to tell or what triggers the next steps. As I said in my original post, the results of the biopsies seem, for most of us, are the definitive trigger. Scanning can help, PSA monitoring can help, but ... it comes down to the biopsies.

I am also trying to get the Genomic Health genetic test executed. Coordinating this is my challenge.

Steve

Hi gardenz,

As you're starting to realize, a PSA number, by itself, does not necessarily mean that PC is present. Some people with VERY low PSA numbers have been dx'd with PC and some with high PSA numbers did NOT have PC.

PSA is extremely useful when a patient establishes a chronological trend by having a history of annual PSA readings. Many cases of PC are diagnosed after the PSA history shows a SPIKE in the readings -- a rapid increase over a relatively short span of time. Doubling time is certainly a serious indicator, but just a spike, itself, raises a red flag. In my own case, it jumped from around 4.6 to 6.4 in two years -- which lead to a dx through a biopsy.

AS for AS, I think it is a very good way to go in certain cases -- but the problem is that medical science is not yet able to ascertain with 100% accuracy who is truly a great candidate for AS and who is not.

This wary feeling I have regarding AS is because a significant percentage of biopsy reports turn out to be WRONG -- the Gleason score turns out to be HIGHER than the biopsy indicates, and sometimes the tumor involvement is higher than suggested by the biopsy.

So, in a real sense, choosing AS instead of some sort of treatment is a roll of the dice.

Take care,
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.

NO OVER TREATMENT FOR ME

Active Surveilance for delayed treatment is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. The pathologic stage of patients who are closely monitored, is similar to initally treated patients with LRPC, so the treatment decisions will be very similar. I've been doing Active Surveilance for the past four years . I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment

SCM2013

Me Too

When I was diagnosed I saw a radiation oncologist, who want to do two forms of radiation:braky and IMRT, also wanted me to have a bone scan which is not recommended by the American Urological Association for Gleason less than 8.

The RO also told me that I had 8 weeks to make a decision, and that there was a 50 percent chance that the cancer had already escaped the capsule.

All this was 51 months ago

 

toyoung, I'd like to know more about this program. My dad and I have decided to skip his June biopsy and to monitor his rising PSA a little more. I'd then like to introduce him to a viable and very ACTIVE AS program here locally to compare that with the BT program at Mt. Sinai.

Hopeful, glad things are going great for you and others on this thread. I agree with your statement that 97% of men will die of something else but I think it's important to point out that this number probably derives from studies that use 67 as a median age and that for 40 year old guys like me that statement might not be applicable.