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Posted 9/5/2015 1:47 PM (GMT 0)
My story, briefly.....

Currently 47 years old. First biopsy done 2012 after a 2.6 PSA. Negative

June 2014 second biopsy after PSA of 4.26 and free % PSA of 10 Negative for cancer but found HGPIN right base

Feb 2015 third biopsy, MRI guided biopsy after PSA of 4.54 and free % PSA of 7 (MRI found suspicious area "equivocal for PCA" on right base) which was biopsied. No cancer found.

So now it's time for my six month follow up......I felt so confident after the MRI guided biopsy but now, of course, all of the doubts are creeping back.....

PSA test on Tuesday morning at The Cleveland Clinic. My question is....what else besides Prostate cancer would cause the kind of rise in PSA and fall in free % PSA that I am experiencing? I have never seen a good explanation of this other than that most of the guys in my situation eventually are diagnosed with prostate cancer at some point. Is it just hiding there or lurking in the HGPIN? Any thoughts?
Posted 9/5/2015 3:01 PM (GMT 0)
I assume you had the MRI at the Cleveland Clinic and it was a mpMRI and the biopsy that followed was a fusion biopsy. If so, I would feel pretty good too. As to why the increase in PSA, could be your prostate is experiencing a growth spurt. With FPSA of 7, BPH is unlikely. The FPSA would worry me more than the PSA. Prostate infection can cause FPSA to be low. I don't think the HGPIN is correlated to finding cancer. Ask you uro to do a PCA-3 test if you haven't had it yet. You might want to discuss having a saturation biopsy or even better yet a transperineal biopsy with your uro.
Posted 9/5/2015 3:11 PM (GMT 0)
Thank you for your response. Yes, I've been at the Cleveland Clinic the last two years and it was a fusion biopsy. I was not aware that infection might cause lowered FPSA...but to my knowledge I have not had any infection, though I suppose that is possible. I know that I'll know more after my test on Tuesday but I want to be mentally prepared for the results since (as of yet) I have only had increasingly worsening numbers in each blood test......though I suppose the biopsy is really the definitive test.
Posted 9/5/2015 3:43 PM (GMT 0)
Todd - There is a relatively new program at the Cleve Clinic run by urologist Dr David Levy thru the Functional Medicine dept. I think it is called the Prostate Health Clinic. It is for patients

1) with elevated PSA or
2) on AS or
3) dx'd but have not yet started treatment

The program is very diet driven (no red meat & no dairy) and quite a few labs are involved.

This clinic is at Main Campus and is held the 1st, 3rd, & 5th (if there is one) Thursday of each month. My husband is going on the 17th, so we will know more about it after that.


Might be something to look into.

I hope you get good news on your next PSA test.

Suz
Posted 9/5/2015 4:01 PM (GMT 0)
That sounds very interesting......thank you for that information. I have been very pleased with the Clinic. I live about an hour away but it's so worth the drive. My doctor is really incredible. (Dr. Fareed). I will mention this to him when I see him next week to review my test results. Thank you!

Todd
Posted 9/5/2015 4:02 PM (GMT 0)
HGPIN is a precursor to PC in many cases. You should be following an Active Surveillance program, which appears exactly what you are doing.
I read a study years ago on HGPIN that taking Proscar helped. You may want to do a search on HGPIN as I recall a hospital in the Northeast that had a successful program that addressed it.
Free psa is very inaccurate and I would not use it in making decisions. There are other markers such as PHI (Prostate Health Index) that are more accurate.
It may be worth a call to Bostwick Labs as they have a few tests better able to identify PC including some genetic tests.
Posted 9/5/2015 4:15 PM (GMT 0)
Lots of things cause PSA to go up and % free PSA to go down, including urinary retention, prostatitis, and BPH. PHI includes both PSA and % free PSA and another measure (-2ProPSA). PCA3 is another biochemical marker that's approved for after a negative biopsy. They are both less susceptible to other influences compared to the tests you've had. I think you are much better off with biochemical tests than poking more holes. HGPIN is common and is not cancer.

- Allen
Posted 9/5/2015 4:18 PM (GMT 0)
Dr Fareed did Steve's biopsy and he had very little pain or issues afterward. I agree that he is an excellent uro. Do you see him in Beachwood? If so, Dr Levy works out of that same office, but probably on different days, so Fareed should know about Levy's program. If he doesn't, ask Michelle Angie. She is the CNP & works with both of those docs.
Posted 9/5/2015 4:20 PM (GMT 0)
Yes, I am getting PSA tests every six months at The Clinic....so I guess that's considered Active Surveillance in my case. I alternate meeting with the nurse practitioner and doctor every six months after each test. It's been a year since I have had an office visit with my doctor (though he did do my biopsy this year) so I'm glad to have the opportunity to talk with him and get his take on the two biopsies and the blood test results as they predict the possibility of pca (now or in the future). As you all know, the time between tests is not as awful as the week before. My anxiety is pretty high.
Posted 9/5/2015 4:28 PM (GMT 0)
Suzhtz.....

I have seen Dr. Fareed at both the main campus and at Beachwood. He has done two of my biopsies and both were relatively painless (a far cry from my first biopsy in Canton which was a painful, bloody mess). I also really love Michelle Angie. Both offices are amazing. I will ask him about Dr. Levy's program.

When I had my fusion biopsy earlier this year the technician who was working the fusion imaging was just learning how to use the equipment, so I was on the table for a very long time while she was being taught. Dr. Fareed was compassionate beyond anything I expected about my comfort and my time. He would stop the talking in the room just to make sure I was alright several times. I would recommend him to anyone.
Posted 9/5/2015 6:57 PM (GMT 0)
Michelle Angie is a good friend of mine. I've known for years how dedicated she is to her patients and profession. When she recommended Dr Fareed for Steve's biopsy, we had no hesitation.

If you see her on Tuesday (she only works Beachwood & Chagrin) tell her Susie & Steve said hi. She will know who you mean. :)

Good luck!
Posted 9/5/2015 7:24 PM (GMT 0)
Both my blood test and appointment will be downtown this time. You have a great friend. I have only had one appointment with Michelle, right before my last biopsy. Otherwise I almost always go downtown but it was just another indication that I had made the right choice that I felt as comfortable with Michelle as I had with Dr. Fareed.

You've been so kind. I wish you and your husband the very best. I'll update this thread as soon as I get my results. Thank you for calming me today. :)
Posted 9/8/2015 4:39 PM (GMT 0)
Got the results of today's PSA test just as I got home from the doctor. PSA is 4.24 (down a bit) and free PSA is 8% (up a point). Not sure what the doc will do with this info but I'll find out on Monday! I'll keep you posted!
Posted 9/8/2015 9:35 PM (GMT 0)
Todd -

Glad to hear the PSA is down and the free is up! I'm curious as to what Dr Fareed will recommend for you, but I imagine he will stay the course. Maybe push for the PHI and PCA3 tests that Tall Allen recommended.

Just a heads up that Dr Levy's program is very challenging -- no red meat, no dairy, not much sugar. Very doable, but it will take a real commitment that I'm not sure Steve is up for.

Hope all continues to go well for you. Take care.

Suz
Posted 9/8/2015 10:09 PM (GMT 0)
Thank you! Yes. I'm curious what Dr. Fareed will suggest as well but at least now I have some things to discuss with him.

I don't think I would have a problem with the diet thing. I was a vegan for years so I could easily adapt. You have been so helpful. If you need any recipe ideas let me know! :-)

Thanks again!!

Todd
Posted 9/8/2015 11:48 PM (GMT 0)
Todd - We meet with Dr Levy on 9/17, but I've given Steve a "pass" to wait until after the Rochester GFMPH to start. So tentative start date is 9/28, but we might do a dry-run the 6 days right before GFMPH. It will probably take us until the 28th to get our kitchen & pantry completely prepped for this. :) Thx for the offer of recipe ideas! I will definitely take you up on that. Right now I'm reading the "Longevity Kitchen" cookbook by Rebecca Katz & Mat Edelson who also wrote "The Cancer-Fighting Kitchen". I'm getting psyched to try some of their recipes, too.

Suz
Posted 9/9/2015 12:02 AM (GMT 0)
You've made a good start, being prepared. You'll find that once you eliminate many of those things from your diet you'll also not crave them so much. A supportive spouse quadruples that effect! I've witnessed diet reverse heart disease. I have no doubts that it can also affect cancer. Sending all my best to you both! Keep in touch.
Posted 9/9/2015 12:18 AM (GMT 0)
Did you by any chance do the Ornish or Esselstyn program at the Clinic?
Posted 9/9/2015 12:27 AM (GMT 0)
Yes. I did Esselstyn. I did it for about a year. This was toward the beginning of my prostate adventures so I can't say how it might have affected my PSA. That wasn't even on my radar then but it did make a huge difference in all of my other numbers....in a good way. It was a lot of work but I felt great!! I'm actually considering going back on it but I would highly recommend getting B12 and D supplements.....or cheating just enough to get an adequate supply from the diet. I became deficient in both which is why I suspended it though I miss how great I felt otherwise.
Posted 9/9/2015 1:16 AM (GMT 0)
Essie's program is very strict, so I'm in awe that you stuck with it for a year. Levy's program allows for poultry & fish, so I don't think the B12 would be an issue. And Steve and I both take Vit D -- like everyone else who lives in Cleveland - lol
Posted 9/14/2015 8:26 PM (GMT 0)
I had my appointment with my urologist today. He is satisfied that my PSA and Free % PSA numbers are holding steady enough to wait another six months before considering another biopsy. He said in my case since I've already had three biopsies (two of those in the last year) that my threshold for biopsy is going to be more like a PSA of 10 or 15.

Because of some other health issues that I am going through I am not a good candidate for the diet program.....at least not a good candidate for study purposes. But I will try to incorporate a lot of those principles into my eating habits between now and my next PSA test and see if it lowers that number at all. Nothing ventured, nothing gained and it sounds like a pretty healthy diet for a number of other reasons anyway!

In any event, I'm thankful to avoid another biopsy and I'm comfortable waiting another 6 months. Thanks again to everyone for their input! I sincerely wish you all the very best!!

Todd
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