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Posted 3/10/2017 8:14 PM (GMT 0)
Added my diagnosis information to my signature. (I hope it transfers) I have been visiting the site for some time and from what I can gather, I don't have an urgent concern and therefore could take some time to gather my thoughts and think things out. There seems to be a very large amount of experienced and knowledgeable individuals on this site - so I appreciate your thoughts/opinions.

This Friday I have a follow-up with my UR and plan on following an active surveillance program and actually feel pretty good about my decision. I am very active and very healthy (high blood pressure since 19 yrs old has been my only medical concern).

Thank You in advance.
Posted 3/10/2017 8:23 PM (GMT 0)
Welcome Paul.

Lot's of knowledge here for sure. Really helped me when I was first diagnosed.

Looking at your numbers you have about as low amount of cancer found as possible. Wouldn't have been a surprise if the biopsy had come back negative. Your plan for AS looks great. I suspect you will be on it for a very long time and be able to avoid the more invasive procedures and SE's.

Do get with a formal program so you get the proper monitoring at the appropriate times. Part of that monitoring will likely be having your slides read by an expert to confirm the G6 status.

Jon
Posted 3/10/2017 8:29 PM (GMT 0)
Welcome,

I'm no expert on AS, but from what I've read here, you probably fit the profile. I believe there are a few members currently in AS. They should be around with their opinions soon.

In the meantime, good luck.
Posted 3/10/2017 8:36 PM (GMT 0)
Sounds good! We have a LOT of guys here at HW/PC on AS.


If you've been reading here, then you know (from the "Newly diagnosed with PC - read this thread first" sticky thread) that the first thing you or anyone newly diagnosed should do is to make sure their biopsy slides are read by a pathologist specializing in prostate cancer. You can get a biopsy 2nd opinion from Jon Epstein here.


Secondly, you should really get that prostate infection treated because it's causing your PSA to jump up and down...and that might throw you off over time since you will be probably getting PSA tests more frequently than re-biopsies.


Come back and tell us how your urologist meeting goes. The evidence shows that there is wide variation in how different urologists "handle" very similar low risk cases...some of the docs have very low numbers of patients on AS, while others are onboard with AS and have much higher numbers of patients on a program of monitoring. The doctors have a very high level of influence on what their patients do...so just be aware of this going into your next meeting. I'd recommend that you ask lots of questions about the extent of his (or her) experience with patients on AS. Be selective.

good luck
Posted 3/10/2017 9:06 PM (GMT 0)
Sorry about your diagnosis, but I think your decision (and attitude) about AS is a wise one. They'e only uncovered a tiny amount of un-aggressive cancer...if that ever changes a good AS program will find it. Good luck to you--lots of AS guys here if you ever want to compare notes. Good luck to you!
Posted 3/10/2017 9:45 PM (GMT 0)
Welcome to HW.

AS sounds like exactly the right thing to do. Here's hoping you get many, many years on AS.

Andrew
Posted 3/10/2017 10:16 PM (GMT 0)
Great choice! I hope you have a real active surveillance program and you don't just do it on your own. Confirmatory and f/u biopsies are important.
Posted 3/10/2017 10:57 PM (GMT 0)
In your case AS is the best option. May the worce that you have to put up with is regular biopsies.

Good luck and welcome to the group!
Posted 3/11/2017 4:39 AM (GMT 0)
Did you discuss your relatively high PSA for such a small amount of G6 cancer with your medical specialists? That amount of PSA from 0.4% of your prostate looks high to me, but I am no doctor. Just curious, I am glad you have the choice of AS.
Posted 3/11/2017 5:07 AM (GMT 0)
Paul, You are certainly correct to choose AS at this time. In my experience, you will need to follow a formal protocol of a confirmatory mp-MRI and fusion biopsy with a year. Those are simply necessary to confirm, as far as possible, that the first biopsy result was correct.

After those confirm your very low risk or low risk status, you can have six month PHI tests, and annual or bi-annual MRIs or biopsies to monitor your status. Other tests, like OncotypeDX, Prolaris, and similar genomics tests, can further support your risk classification.

This sounds weird, but its true...you have the best possible diagnosis of cancer. Hopefully, it may never require radical treatment. Good luck.
Posted 3/11/2017 11:20 AM (GMT 0)
Paul,

Being in about the same position as you, I also opted for active surveillance when I was diagnosed last week.

If you're interested in reading more on active surveillance protocols, the Cancer Care Ontario guidelines for active surveillance, their recommendation by the American Society of Clinical Oncology, and the UK's NICE protocol for active surveillance, are all just a click away.
Posted 3/11/2017 3:14 PM (GMT 0)
O P
Welcome and best of luck

Hero
Posted 3/11/2017 4:04 PM (GMT 0)
Good Decisions for AS
Do stay on a program
I noticed that your PSA went up over 2 points this last year
That should have raised a flag of concern
Maybe that is why you had the biopsy?
Stay on a good monitoring program.
Posted 3/11/2017 4:11 PM (GMT 0)
I don't see his psa as that high{multiple reasons for that}...im sure his doctor is aware...having said that...You should get the slides reread to confirm it is a g 6...odd... I haven't seen anyone mention that...ahh...it may be because of your knowl edge and confidence...we can tend to assume stuff...from the more erudite...get em reread...you may not even have cancer{just precursers}...but that shouldn't stop an AS program in this case...just ease the seize... Oh if this doctor even hints at surgery...depart the fix{aviation term} pronto...yeah Im the suspicious type...dont even wanna change that trait...
Posted 3/11/2017 5:30 PM (GMT 0)
OhioPaul
Welcome. I agree with you and with other posters - based on what you've posted, you are a perfect candidate for active surveillance. You won't expose yourself the side effects risks of other treatment options and may well never need further treatment. Just be sure to stay current with the "active" part of the program.
Jim
Posted 3/12/2017 10:08 AM (GMT 0)
You can safely choose active surveillance now. However, you should do the scheduled biopsy this November to check again. I would suggest to do an MRI-guided biopsy then. Prostate cancer is a multifocal disease and the biopsy may miss lesions in the prostate. Usually there are more than one lesion and these could have a different Gleason score.

George
Posted 3/12/2017 1:52 PM (GMT 0)
OP....your a LUCKY guy at this point !!! Enjoy all that you can ...NOW!
Posted 3/13/2017 8:10 PM (GMT 0)
JackH - You mention looking into a "prostate infection" Can you clarify for me what your talking about?
Posted 3/13/2017 8:11 PM (GMT 0)
Thanks everyone for your replies. I appreciate the support. I will report back after my visit this Friday
Posted 3/13/2017 8:16 PM (GMT 0)

OhioPaul said...
JackH - You mention looking into a "prostate infection" Can you clarify for me what your talking about?

Your PSA went up to 3.95 and then down again. That is a tell-tale sign of prostatitis. The latter is an infection that can sometimes be treated with antibiotics.
Posted 3/13/2017 9:23 PM (GMT 0)
If the biopsy shows cancer I do not think a second opinion will tell you it is no cancer. Usually the second opinion will upgrade the result.

You may have an infection as well, which increases the PSA value, but the cancer will stay in any case.

George
Posted 3/18/2017 9:56 PM (GMT 0)
Friday visit went well. UR agrees with my decision to follow AS. Discussed getting a 2nd reading on slides and thinks with the low risk I have that we can wait to next biopsy to evaluate. If it shows changes, then we can look at 2nd opinion. PSA test from 10 days ago was 3.9
Posted 3/19/2017 12:21 AM (GMT 0)
Whatever the doctor orders.

I'd want an mp-MRI fusion guided biopsy next.

It's lost on alot of people (esp. the one's from the more populated and cosmopolitan areas of the U.S.) just how much of this country still is so far behind on this sort of equipment. And therefore, on their protocols and treatments.

If your uro didn't mention one to you .... it's because he doesn't have access to this equipment. (and if they don't have the equipment...."It makes no difference." is soon to follow).

Travel to get one if you have to. (that's what people are referring to when they tell you to get in a structured program. Get in a GOOD one. There's structured programs everywhere....but not all are created equal). They're only created with whatever equipment is available in the area....or, for that matter....in that particular group. there could be a mp 3T-MRI machine next door...but...if it's not in the group your uro belongs to, it won't be in his AS protocol either)

btw...and fwiw...John's hopkins downgraded one of my G6's

What you've got is great news. Just be sure you know what you've got.
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