Update from UCLA

Hello for the second time!

Harold went to UCLA yesterday for a second opinion.  The doc was very concerned about the incompleteness of the Maui pathologist's report.  I was concerned as well since there was not much to the report and there were 2 grammatical errors (I used to be a teacher).  Harold brought his biopsy slides with him to UCLA and we should hear back in a week or so after a radiologist at UCLA looks at them.  If the gleason score is indeed a 7, the UCLA doc recommends treatment and if it is a 6 he recommends another biopsy and watch and wait. 

The doc is a surgeon and admitted his bias but suggested that Harold meet with a radiologist and he said he would be happy to recommend one if needed.

So we wait and keep on reading.

If anyone has any feedback or suggestions I would love to read it.

And I want to thank everyone for all their posts - it has been an invaliable learning experience.

Hello Maui Viv - good move to get the 2nd opinion on the slides, particularly given the "warning signs" from the original pahtologist.

If UCLA determines that another biopsy is required I would suggest you look into "Stereotactic Transperineal Prostate Biopsy (STPB)" as an option versus the 'standard' Transrectal biopsy. Here is a link (copy and past the following into your web browser) that does a good job explaining STPB and the benefits over Transrectal:

http://www.prostateimplant.com/STPB-stereotactic-biopsy.html


The wait over the next week will be difficult - but I would encourage you guys to use that time to learn as much as you can. This HW site is awesome from the standpoint of getting input from guys that have gone through being diagnosed, down their path of learning about the beast and the various treatment options and finally being treated and thus having the ability to pass along specific experiences.

Additionally it would serve you well to do as much research as you can on the internet - there is so much to be found out there that it can be "numbing" - but is something you really ought to do. The term I have used is "paralysis by analysis" - but again at the end of the day it will be a good thing and better arm you to decide what to do and when.

There are a number of great books out there that will help you understand PCa as well, including Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strum and Scholz' "Invasion of the Prostate Snatchters".

Also be prepared to visit with multiple experts in the different medical modalities including surgery, radiation and so on. This may be a bit pre-mature at this point, until getting all of your husband's statistics in - and please, when you get the newest pathology report from UCLA be sure to share them as most of us do at the bottom of our posts in the "signature" section.

Finally as part of my intensive research I downloaded and purchased a number of reports and studies that were helpful to me in understanding what this cancer is all about, the different treatment options available, as well as the results and side effects of each. One of these is a study I purchased during the learning part of my journey, that came out in early 2012. I found that this study, sometimes referred to as the "Grimm et al" report, is the most current analysis of I believe 15 years worth of results from the different PCa treatment options. Additionally I have a document that I found incredibly helpful for me in understanding PCa, treatment options, ideas for healthy living, etc. It was done by the University of California at San Francisco and is titled "Prostate Cancer & Its Treatment." As I have done in the past to "newbies" such as yourselves I would be happy to share what I have, just shoot an e-mail my way and I'll respond.

Best of luck to you - keep us posted, you've come to a good place - lots of help out here!

thanks to those of you that replied. i will keep all the names and procedures that were mentioned on my list.
aloha

UPDATE: another problem. harold called ucla today to see if they had their second opinion on his biopsy slides. they told him that there was not enough tissue to give an opinion so they had called the hospital in maui and asked them to send more samples. the pathologist in maui was not there today but the slides were not resent and can't go out till monday at the latest. i am concerned, especially since the original pathology report was 2 sentences long.
we are going to be in los angeles in a week and a half and i think it might be a good idea to get a doc at ucla to do a new biopsy and start from scratch.
what do you all think?

MauiViv :

You and Harold may want to talk to Chris King, MD & PhD  at UCLA. 

He is one of the top hypofractionalization/SBRT (CK)  radiation oncologists in the country.  Good luck on your journey.

Post Edited (JAVGuzzi) : 11/17/2012 7:06:16 AM (GMT-7)

viv

Great news that the gleason was downgraded to a 6.

UCLA is a center of excellence.

The results of the biopsy , the gleason score and involvement of the cancer is the critical information to be used for treatment decision.

The PSA is an indicator only, and other factors such as infection, sex , strenuous exercise such as bike riding, hard stool, etc may cause the PSA to rise.

The size of the prostate, influences the PSA. PSA is higher with larger prostates. What is the prostate size.

A criteria for for low, low risk Active Surveillance is two cores or less, Gleason 6, less than 50 percent involvement in any one core and PSA 10 or less.

You husband appears to have indolent cancer, that is not likely to spread and is an excellent candidate for "Active Surveillance with deferred treatment, if necessary".

You and your doctor may consider another biopsy, MRI guided, as the diagnostic test that will confirm the previous results and determine where you stand.

Hi MauiViv,

I'm new around here, so take my comments with a large grain of salt. That said, if I correctly understood your last post, you're basing the decision between surgery and further diagnostic tests solely based on the upcoming PSA score. Others can weigh in here (please), but I don't believe PSA tests by themselves would be enough to base that decision on.

Instead, if you're still trying to figure this out, wouldn't it make sense to use it as another factor in conjunction with the other tests? That's my two cents and I'm not trying to complicate what I know is a very difficult decision.

FYI, my PSA score before my biopsy in September was 9.6, but it had bounced around a lot over the past five years before then. Interestingly, BEFORE I started my hormone therapy two weeks ago it had dropped to 6.6. I'm not sure how typical my bouncing score is, but any "snapshot" of my PSA would only be that...one data point.

Michael

It is easy to miss things in a biopsy, even for a very experienced surgeon. (See my signature) With your PSA and with questions about the samples from the first biopsy I would be all about getting another one done as soon as conveniently possible.

Viv - based on everything you've shared with us I would pretty much discard the first biopsy. . . . Having said that, I would also not react solely to the next PSA - if it were me, I would get another biopsy done at UCLA. I would also check into having a transperineural biopsy as opposed to the "standard" transrectal. Google to learn more - but again if it were me I'd be headed towards another biopsy as soon as the folks at UCLA say I could.

Best of luck.

I believe it is MRI fused Color Doppler Ultrasound Biopsy. The machine that my Uro uses also has Elastography feature.

You can google to learn more. In my case, the CDEUL did not show abnormal blood flow pattern, the suspicious spot from the MRI was negative but 3 out of 14 cores were positve. My Uro said that my tumors were too small for the machne to detect.

Post Edited (akai) : 11/26/2012 9:01:11 PM (GMT-7)

harold has his "high tech" biopsy at ucla today and should have the results at the end of next week. he had an MRI 2 days ago and they superimposed the MRI results over the ultra sound. the MRI showed one small suspicious area so the doc took extra samples from that area. the entire biopsy was shown on a computer screen that harold was able to watch during the procedure and i saw it afterward. having this new procedure means that harold is officially part of a clinical trial. i assume they are trying to decise whether this type of biopsy gives better results for tratment decisions.
fingers crossed for a 6 instead of a 7!
update to follow next week.

I dislike very much the waiting for results. I think it stresses me out much more than it does my husband. Hope and prayers for good results.

I've read some of the preliminary results for your new whiz-bang superimposed MRI/ultrasound biopsies. If they turn out as well as the early results suggest, they could be something of a game-changer. There are lots of exciting new treatments for PCa that are waiting for a more reliable way to decide where the cancer is so it can be zapped.

Waiting for results is nerve wracking but at least you are waiting for better information this time. We all hope it is good news as well.