AS going forward-recomendations

[Mufj]

Hi all havent posted in a while and appreciate the valuable inf I have gotten off this site so far

Can see my story in profile. to summarize I have been on AS for bout 3yr with anual biopsy and MRI and PSA every 3 month. PSA has generally bee trendless mostly running between 3 and 3.7 but have had a spike up to 4.3. MRI has been pirads 2 with no focal lesion. biopsy as follows

first 1/12 5% G6 right apex

2nd 15 neg

3rd 1/15 <5%G6 left apex, several cores showed chronic inflamation

have urinary issues but with original flow at 3 but with flowmax up to between 10 and 13.

Big question here is does it make sense after 3 biopsy with no meaningful change to spread biopsy out to every 2 to 5 years(dont know which is best).and rely on MRI and what is a recomended frequency. PSA every 3 month is ok with me. I had brought this subject up at an appt in aug after my last biopsy and got a noncommital response said lets wait till Jan after. the mri. so hopefully they will recommend a change that includes spreading out biopsy. I have been told by some to not even bother monitoring cause G6 is not uncommon for someone my age. Not sure I want to go that route but reduced biopsy makes sense. So would like commnets and any info on what other programs are like

[Justfor_]

Biopsies are a way urologists make a living. IMO, mpMRI is more conclusive and vastly less invasive procedure. As new models employing higher magnetic fields and more sensitive sensors come into every day use, biopsies will find their place in museums. Quarterly PSA is good enough. Ignore any variance of the order of 20% but look very diligently for any trend forming. A 50% increase detected in PSA trend (after having filtered out the noise) should work as an alarm bell.

[LowT]

What is your % free PSA?

[Mufj in reply to LowT]

had it done once-it was 22%

[Tall_Allen]

Makes sense to me. MSK has an AS protocol like that. I think you are overdoing the PSAs though. You may want to add finasteride. It was recently shown to delay progression:

urotoday.com/journal/prosta...

[Mufj in reply to Tall_Allen]

Tall allen

I always find youre references interesting-dont know how you find the time to keep up

Its already has been sugested finasteride for the BPH issue rejected for now due to side effects and opted for flowmax which seem t work well for me-are there any better options for this issue

what is MSK AS protocol and do you have any references/links to AS protocols from other major programs-I am with Penn medicine in phila.

Had real problem with my original urologist then went to Penn. the original one At Penn was ok but switched to somone else in the Penn system cause dont think the original was totaly on board with the AS. Actually the one I am with now I mostly see his RN who I really like cause when I ask a question she get to the heart of the matter and she is not afraid to say I/we dont know. Also very pragmatic- sorry bout being so winded.

thanks much for responding

[Tall_Allen in reply to Mufj]

The MSK protocol is pretty much what you describe. In the absence of PIRADS 3- 5, just doing a biopsy every 3-5 years. Annual or semiannual PSAs. It is a flowchart where past results dictate next steps. Ask your doctor to contact them.

[Mufj in reply to Tall_Allen]

Allen hope you are well and appreciate youre input. Last week had my appt. and still want to do biopsy in october little more than a year from last one. but not commital on spreading out biopsy. Said their protocol is biopsy every year but will discuss spreading out biopsy later. I dont get much more discussion. I suspect that Penn does not have a very mature program and does not stratify patients according to risk and is one size fits all program. Due to a scheduling screwup part me and part their system my appt was cancelled and did not know till I got their but they squeezed me in so appt was somewhat rushed so did not engage in much discussion(also I am not very good on the fly. So would like to send them convincing info on work other have done to demonstrate that spreading out is a viable option. I will be communicating via the web portal and will most like be reviewed by his RN who is very good. Other than this issue I am really happy with what they have done especially with my urinary issue. also although the doc is a bit difficult to communicate with his RN who I meet with most often is super good. I think I am in part dealing with bureaucracy issues(penn is a large organization) but suspect they are not on the leading edge of AS. Also due to the fact have not had significant medical issue in my life not used to dealing with these thing-but got to learn cause otherwise I will be just a number

you did send me referenc to the canary pass study and saw a video here on malecare regarding that

anyway thanks in advance for any input

[Tall_Allen in reply to Mufj]

Maybe get a teleconsult with the Behfar Ehdaie, who leads the MSK AS program.

[Mufj in reply to Tall_Allen]

Allen thanks for youre reference looked on there website and had nice info. Feel I am at a nexus and need to evaluate what I want to do going forward. Especially since I have 3 biopsy and MRI with 2 to 3 yr PSA data. I presume I would need to send these reports to them ahead of time. any insight to make this efficient would be appreciated. My hope is to send info to penn to support my opinions so that they know it is evidence basedthanks very much for youre time sure you are very busy

[Tall_Allen in reply to Mufj]

Call his office. I'm sure they'll tell you the data they need. I'm sure they'll want to see your PSA history, mpMRIs and biopsy reports. They may want your slides too.

[ASAdvocate]

Johns Hopkins has changed to doing protocol prostate biopsies to every two years up to age 80. They had loosened it to every three to four years, but missed diagnosing a patient with aggressive disease, so it’s now set to two years, unless other tests indicate an immediate need.

[den44 in reply to ASAdvocate]

It's surprising that Hopkins would change the protocol from every 3 to 4 years to every 2 years based on 1 missed diagnosis. I'd be interested in seeing how many diagnoses were correct as compared to the 1 that was missed. I also don't understand how more frequent biopsies would solve the problem of a missed diagnosis.

[ASAdvocate in reply to den44]

JH’s data shows that systematic biopsies still find around ten percent of significant cancers that are missed by MRI. So, they insist on regular protocol biopsies.

[Mufj in reply to ASAdvocate]

Thanks asa i have heard that

Dont think all cases ar the same i would be more conerned about spreading out biopsy if they 20 to 30%g6 and were 60 or younger with psa of 6 or7 With that much g6 there could be some pattern 4 floating around or it could develope. But at 70 and 5%g6 an psa 3 to 4 with psa density of .08 think spreading out makes sense. Also have done annual for 3yr with no change. Dont think it is a good idea to initially do every 2 or 3 yr ya first have to do anually to make sure nothing else shows up

[ASAdvocate in reply to Mufj]

I have one lesion at five percent Gleason 6. At 76 years old, and an AS patient since 2009, they are adamant about my two year biopsy. That one missed case changed their attitude.

However, I am refusing a contrast MRI and also a transrectal biopsy. They are accommodating me with a perinureal ExactVu micro-ultrasound biopsy. That will give them high resolution real time imaging, and I won’t have to worry about antibiotics or infections.

[Mufj in reply to ASAdvocate]

Youre stats sre nearly identical to mine

Was it hard to make a decision back then when AS was less accepted with fewer tools and data. What was the driving force for you

[ASAdvocate in reply to Mufj]

I was seeing a urologist at Johns Hopkins. He worked under Bal Carter, who founded their AS program in 1994. I was recruited the day I was diagnosed.

I was very lucky👍

[den44 in reply to ASAdvocate]

AS, from a posting on another support forum, I remember you saying that Hopkins agreed to keep you in their program even though you will no longer be following their protocol. I know you had many biopsies.

I totally agree with Mufi in that not all cases are the same. As an example, should men on AS for 10 years, with PSA never having exceeded 5, one Grade 1 results in each of 3 biopsies (less than 5% in any sample) start having biopsies every 2 years? I know that Hopkins requires all AS patients to follow the same protocol, however, I think more frequent biopsies for all AS patients because of 1 missed diagnosis seems too much.

Five years ago, I was diagnosed with PC. My PSA had increased from 2.4 to 4.0 in two years. My first TRUS biopsy had Grade 2 diagnosis in less than 5% of 1 sample. Second opinion by Dr. Epstein couldn't confirm any cancer. Third opinion from Sloan (requested by original pathologist) said Grade 1. Two months later, second biopsy found Grade 1 cancer in 1 sample (less than 5%). Confirmed by Dr. Epstein and pathologist from Sloan.

My PSA's have never exceeded 4.0. Six months ago, I had my third biopsy. 21 samples taken. One diagnosed as Grade 1 in less than 5% of the sample. I've been under the care of a local urologist. I've discussed enrolling in a structured program like Hopkins. He's okay with it, however, he says no two PC patients are the same and his protocol is based on each patients history and examinations. I will stay with him.

I can't have an MRI because of a defibrallator. I know there is new technology being used by different instiitutions (i.e. perinureal ExactVu micro-ultrasound biopsy, PrecisionPoint™ Transperineal Access System), however, they are not yet being used by all urological groups. Maybe they will be available when I have my next biopsy - hopefully no sooner than 4 years. I'll be 76.

Again, I'm surprised that Hopkins has changed their protocol for "all" AS patients to every 2 years. My urologist also believes that biopsies be done until age 80.

[Mufj in reply to ASAdvocate]

I would agree also that you were amenable to doing it.

Consider myself lucky in that my doc out of the blu did the psa and the whole situation raised my awareness cause i may not have ether bothered. Also finding sites like this. To make me comfortable with AS. The first 2 uros though they recomended AS they also kept pushimg treatment. The last one who is part of the penn system sais well uofficially i sould get RT

Did not like that unofficial bussiness

[ASAdvocate]

I have always followed JH's AS protocols. Had some arguments with Dr. Carter about biopsies, but then reminded myself that he was a titan of AS, and agreed to go along.

You sound fine doing what you are doing. No need to change. Apparently that one case of serious PCa being missed by JH's longer biopsy interval was game-changing to revert to the two-year protocol.

JH now uses the Precision Point transperineal access biopsy system. They only do transrectal in special cases.

I participate in many forums, and there are some with men who say that they are doing AS, while self-doctoring. We often clash about taking risks versus taking orders from doctors. That's just the state of things today. Someday, we will have better diagnostics.

[den44 in reply to ASAdvocate]

Thanks for your involvement in this forum as well as the others. Reading your posts has made me feel comfortable with AS, particularly having a Grade 2 diagnosis from the local pathologist. In my first biopsy, after seeing that Dr. Epstein couldn't confirm his Grade 2 diagnosis, I found it interesting that the local pathologist decided to get a third opinion - from Sloan.

I know there are men that are doing AS while doing self-doctoring. The benefit of a structured program is to force men to follow the specific protocol or be thrown out of the program. In my case and I would imagine with some others, I will do whatever my doctor recommends - although I do ask questions.

With regard to the Precision Point transperineal access biopsy system, I've spoken to the principals at Perineologic asking them to market their system to the urological groups in my area. I think it's great that Hopkins now uses their system. I think Perineologic's offices are near Hopkins.

[Mufj in reply to ASAdvocate]

AS

not to be a pain but do have a question

I have read in many palces that the presence of G6 in men 60 to 70 year old is to be expected

that being the case what is the argument for continueing biopsies especially if no aberrations are found with MRI or PSA. If it were not for the nodule finding by the original urologist I would not be on this path. My current urologist says this nodule was likely a calcium deposit or something else that resolved itself. Mind you I am totaly happy with what was done so far for my piece of mind. Just want to have a balanced plan going forward. given youre situation appears similar so whats youre thoughts on this

[ASAdvocate]

There are certainly arguments against continually testing men over seventy who have had years of tests with nothing found beyond a small amount of Gleason 6.

In my case, I always show up for appointments with questions and sometimes challenges.

For me, the final determinate is JH AS’ twenty plus years results. The men in their program who have died from PCa is one-tenth of one percent. Those stats always make my decision to abide their protocols.

[den44 in reply to ASAdvocate]

AS, although I wouldn't want to be in the one-tenth of one percent group, I think there has to be an "acceptable" mortality rate. If not, we would bankrupt the system in overtreatment.

Since Hopkins has changed their biopsy frequency protocol, I wonder what mortality percentage would be acceptable to them to go back to their previous protocol.

[ASAdvocate]

It was one patient who was under-diagnosed, but had serious PCa. Now, things may balance out in time, but that two year protocol is the reaction to that unfortunate case.

There are several long-established formal AS programs, MSKCC, UCSF, Mayo Clinic, Cleveland Clinic, Sunnybrook, and others. They have somewhat different entrance criteria and testing protocols. JH is about the strictest.

[Mufj in reply to ASAdvocate]

Thanks AS

how do I go about taking a look at their program-do they have info on their website

At penn their program is fluid depending on patient but what they told me is they want to get 3 biopsy and 3 mri along with psa data every 3 month. then after that point will decide on schedule going forward. This makes sense to me.by doing these frequently initally you can see if something new shows up. In my case evidence of pattern 4 and if there is more pattern 3 than originally discovered. In addition are any changes taking place, but this can only be evaluated with MRI and perhaps PSA. With biopsy cant tell if something new was a change or just undetected. I wonce saw an article that presented the probability of missed cancer based on the number of biopsy for example 1biopsy=30%, 2 biopsy=10% and 3 biopsy=2%(these are just made up numbers-dont remember what they really were) wish I could find this article. you have any take on this concept.

one other question-when they wer doin the relaxed version of their protocol did they do the 1 year followup biopsy then go to 3 years or more.

again thanks for youre thoughts

[ASAdvocate in reply to Mufj]

JH only did the relaxed biopsy protocol for a couple of years.

Their first year requires an MRI six months after diagnosis, and then a targeted biopsy to reduce the odds of higher grade cancer going undetected.

After that, PSA at six months, DRE every year, and MRI and biopsy ever two years. Of course, being part of a study group, other tests are run which I don’t know about.

I don’t want anymore contrast MRIs, so I am having a transperineal biopsy with real time micro-ultrasound in March, by my request.

Penn’s requirements are very stringent. The most demanding I have ever seen. Maybe because of the Gleason 4 pattern that was guessed.