Getting results today

This is my first post. Glad to find this forum. The story so far is a gradually rising PSA. My doctor wanted to just watch it, then he moved away and it was another 15 months until I got tested last month. It had jumped to 5.9 so I went to see urologist who repeated the test and did a free PSA test. That showed me at only 4% so next was the biopsy last week. Today we have an appointment to get the results.

In the meantime I have been reading, talking to friends with experience and waiting. My wife went though breast cancer treatment a few years ago so we know the drill if it comes to that, though the details are completely different.

Thanks for all the stories and positive attitude here.

Oct 2015 PSA 5.86 PSA Free% 4%, Biopsy
Sept 2015 PSA 5.9
Jun 2014 PSA 4.31
Jan 2014 PSA 4.61
Oct 2013 PSA 4.29
Sep 2013 PSA 4.26
Dec 2011 PSA 3

Rainwest,

We're all right here for you. Let us know how you are doing and we're all here to support you, going forward.

You have found a band of brothers ... and sisters ... right here !

Sent with my best,
Cyclone

Hello, Rain and welcome. Hope your stay with us is a short one. Good luck on your results.

If you do happen to get diagnosed with cancer, feel free to come back and give us your stats. We have lots of knowledgeable folks here and you will undoubtedly get some good advice.

Jim

Thanks everyone. Well it looks like I am in the club no-one wants to join.

The results are adenocarcinoma, T1c, Gleason 6 (3+3), 3.5/14 cores with cancer, 25%, 45%, 75% in LLB, LPM and LPA regions plus "rare neoplastic glands with microfocus of adenocarcinoma" in the LPB region

I was glad to read the overtreatment section and also Peter's comment "much of the damage that prostate cancer does to men's lives stems from poor treatment decisions made in haste by the newly diagnosed. "

The Urologist said with these it results it is one of the slow-growing cancers, but with more than 3/14 positive cores (including the one with microscopic evidence) he recommends surgery or radiation, rather than AS or WW, and gave me two referrals to talk to the doctors. I said I wanted a 2nd pathology opinion he said no problem at all. He also agreed there was no need to rush to treatment.

Next step then will be getting another report.

Rain, sorry for the news but it is clearly not all bad. Yeah, you are joining us but it looks like you caught it early so you have time and options. Re the second opinion on the biopsy slides, please consider getting it from Epstein or Bostwick. They are two of the acknowledged experts and you can take their opinions to the bank.

My advice to you is to consider AS as well as treatments. But, as others have pointed out, the "A" means active so if you choose that route you will want to pick an experienced AS doc/program. Other than that you should be cured by surgery, SBRT, LDR Brachy or HDR Brachy. Or other choices but those are the ones I would recommend. I suggest you speak with doctors who specialize in EACH of these so you have done your due diligence and know your options well. If you'll let us know your geography and/or willingness to travel, I'm sure you will get some suggestions about the experts to contact.

My personal assessment of the options is that all of the above treatments are likely to cure you equally. Surgery has the value proposition of full knowledge of your pathology and the radiation options have the value proposition of a better chance of not having onerous side effects like incontinence or ED.

Good luck and please let us know how we can help.

Jim

P.S. I recommend that you read the sticky thread at the top of our forum that is designed for newly diagnosed patients as well as two books, "Invasion of the Prostate Snatchers" by Dr. Scholz and Dr. Walsh's, "Guide to Surviving Prostate Cancer".

Perhaps unlike your wife's experience with breast cancer, there are so many excellent options with prostate cancer, and as Jim said, each option has its own specialists who may know a lot about the one treatment they specialize in, but perhaps not so much about other treatments.

As you interview doctors (I interviewed 6 before deciding), I think you will start to see the diversity in their opinions. Even already, on the active surveillance issue, there are many excellent programs that would consider you to be an ideal candidate. I hope you take your time as there is really no rush with your diagnosis.

I'd recommend Epstein or Bostwick for a second opinion - they have pathologists solely dedicated to reading prostate biopsy slides and are universally considered the gold standard.

A few recommendations in your area:
•Be sure to check out the Stanford AS program too
•Peter Carroll or Shinohara at UCSF for surgery
•Alexander Gottschalk at UCSF for SBRT (Stanford is good as well)
•Al Taira in Mountain View for LDR Brachy
•I think Joe Hsu does HDR brachytherapy at UCSF, but everyone I know personally was treated by Demanes or Kamrava at UCLA.

I recommend talking to each of them.

A number of others have posted some great thoughts on Active Surveillance.

I would like to point out that there is a recent thread in the forum which basically states a true 3+3 Gleason score will never metastasize. There is a problem in that post RP pathology review frequently has at least a slight upgrade. So, while your scores are 3+3, that is only the cores which were hit on Biopsy, and it is difficult to ascertain if you are a true 3+3 throughout.

Which is why you Actively Surveil your circumstances.

This area, like many other fields is constantly changing with new treatments and changing protocols as things progress.

AS for low risk may have an advantage in terms of future treatments and protocols being much better results and fewer side effects for patients.

Thanks. Monday I'll fill out the paperwork and have the slides sent to Johns Hopkins. I ordered Walsh's and Peter Scordino's books and they arrived from Amazon the next day so I spent much of the evening reading.

A couple of things on the biopsy raised questions I am trying to understand. It was a 14 core biopsy.

The left lateral base was G3+3 with tumor in 3mm of 1.2cm core (25%)
The left parasaggital base had "rare neoplastic glands, representing micro focal involvement by adenocarcinoma" in <1mm of the core (but no Gleason score)
The left lateral mid had "fragment of fibromuscular tissue" but the specimen was only a fragment < 0.1cm which tells me the urologist or the lab messed up that core
The left parasaggital mid was G3+3 with tumor in 7mm of 1.5cm core (45%)
The left lateral apex was benign
The left parasaggital apex was G3+3 with tumor in 8mm of 1.1cm core (70-75%)

Then the comments added that "Suspicious but not diagnostic tumor demonstrating some fused glands (grade 4 pattern) are noted" in two of the mid and apex cores.

I don't know if this means it is possibly more serious. The urologist seemed quite convinced it was "one of the slow growing types" but I can't see how he knows that. From what I read cancer near the apex is more troublesome. Also the mention of fused glands and the incomplete fragment of a core isn't encouraging.

i guess that's all the more reason to get the second path report.

Lastly according to Walsh the free/total PSA of only 4% is way below the threshold of concern. Does anyone else have experience with that?

Rain, welcome to our club. Not much I can add to what others have said. It sounds like you're taking a good approach to this. At your age and gleason scores, I'd say that AS is a viable alternative for you. You might well be one of the fortunate men who will die with PC a long time in the future, not one who dies of it.

UCSF and Stanford both have great reputations. As far as travel goes, my response is that you go to the best place you can reasonably get to. The definition of reasonable is up to you.

You'll do fine, keep us posted. By the way, your diagnosing Uro sounds reasonable and rational. He's not rushing you to the treatment of his choice, unlike some.

Welcome Rainwest,

Rainwest said said...
Thanks. Anyone in the East Bay? My referral was to Alta Bates and I've a second referral to Peter Carroll. SF is reasonably close but Stanford a long and busy drive.

I live in the East Bay as well. Five years ago I met Dr. Swift RO at Alta Bates after my PCa diagnoses. His first recommendation to me, was to get a second look at my biopsy. As he put it " it's not that I don't trust your pathologist but I trust the pathologists at UCSF more...". The second opinion from UCSF upgraded my Glenson from 4+3 to 4+4.

I also had a consultation with Dr. Gottschalk at UCSF as I was interested in SBRT. Due to my (upgraded) high risk disease and the newness of the treatment I wasn't a good candidate for SBRT.

I was very impressed with both the ROs I saw. Both consultations were not rushed and all questions from me or my wife were fully addressed. In addition follow up questions were answered by email from Dr. Swift.

With my high risk cancer both ROs were recommending two and half years of hormone treatment with the radiation. With the prospect of the side effects from hormones i decided to switch to surgery as my treatment course. Since Dr Carroll at UCSF at the time had a two month backlog just for a consultation, I returned to my original urologist who had done my biopsy, for RP surgery. My urologist practices in Oakland and Orinda. Two important reasons I decided to proceed with him were, he had done his fellowship at USCF under Dr Carroll and he would treat any ED issues aggressively. My outcome after RP surgery was very good, continent from day one, full intimacy at 7 weeks ( with injections) and after 5 years an undetectable PSA on <0.02. By the way the Gleason 4+4 was confirmed in the pathology after the RP.

Additional information pertaining to your questions:

Very recently my brother in law (age 68) was diagnosed with Gleason 3+4 PCa. He met with Dr. Rembert RO at Alta Bates. Recommendations were for a second opinion of the biopsy with Bostwick Lab, a mp MRI and standard IMRT. After the second opinion confirmed Gleason 3+4 and the MRI showed confinement, the BIL is proceeding with the IMRT. He just last week had the gold markers implanted. The radiation will be done at a newer facility in Pleasant Hill.

Hope some of this helps with your treatment journey. You appear to have a good understanding at this point in the process, which will serve you well in making a treatment decision.

Ted

rainwest said...
It was a 14 core biopsy....Lastly according to Walsh the free/total PSA of only 4% is way below the threshold of concern. Does anyone else have experience with that?

Standard TransRectal UltraSound TRUS biopsy of usually 12 plus/minus cores in my understanding does not reach the full prostate.

To get all areas they do a "mapping" of 50/60 or higher amount of cores transperineum to reach all areas (I think under anesthesia). In your situation, if it were me, I would not do any treatment until I was somewhat certain of all the factors.

As to the free %, I am uncertain but if I recall correctly I believe the current thinking is to the effect _low_ free percent (below 5%) along with High (above 15%) is somewhat consistent with a positive diagnosis. I may not be nailing those percentages but believe they are close.

Hopefully, if I am incorrect in anything I am sayin( I am new here, but read a lot) others will point out any incorrect statements.

Having said that, PSA, %free PSA, PHI, and PCA3 are general tools with the highest degree of accuracy for PHI and PCAe in the 75% to 80% being in the highest range. Slides are the only valid way of diagnosis.

ETA - Maybe he is saying that low% is consistent with less aggressive and more indolent type than higher %.

Post Edited (Ken) : 11/3/2015 2:43:48 PM (GMT-7)

rainwest, I'd suggest two things: Get yourself a spiral notebook to write down your questions and the answers you get and a big accordion type file pocket to collect all the paper in. And, if you can, don't go alone. I found it helpful to have my wife in the room for every consult, so that between us we'd remember more. You're going to get dumped with a huge amount of information in a short time, in medical language that you may not understand very well.