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This member is a YANA Mentor This is his Country or State Flag

Jack B lives in Washington, USA. He was 56 when he was diagnosed in October, 2013. His initial PSA was 7.50 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

In 2006-07, I had a severe prostatitis infection and went into urgent care. It was diagnosed as prostatitis and my PSA had dropped to 2.1 but in my discussions with the doctor, I was left with the impression that it was BPH.

April 2013

I had a terrible flare-up in late April, 2013 and went into urgent care. The urgent care doctor did a DRE found nothing but ordered a PSA test that I had e-mailed to me over the weekend. She also put me on a half-dosage of Cipro. The PSA test showed 101.6. I panicked figuring out that a reading like this would normally be metastatic cancer. I found references on this site that says this isn't necessarily so. I managed to get my stepson on the phone who is a resident who told me that his information was that prostatitis could cause an elevation of 75. I also found a web reference from UCSF that it be as high as 100.

I discovered Yananow that terrible weekend. And found cases where prostatisis had even higher PSA readings.

Got into see me GP the next Monday. He did a digital, felt that it was inflamed but not terribly and no nodules but told me he didn't think it was cancer and referred me to a urologist. He said they normally don't take PSA tests in the middle of prostatisis infection.

Got to see the urologist on Tuesday and he assured me that he thought I had prostatitis and that the high PSA could be cause be that alone. He kept me on the dosage of CIPRO and wanted me back in two weeks after another PSA test.

May 2013

My PSA dropped to 19.4 after two weeks. Met with uro who said he didn't think I had PCa but that we would continue to work on bringing the PSA down. Negative DRE. Put me on a full course of antibiotics and wanted me to see another uro because he was moving his practice to Kansas City.

July 2013

PSA dropped some more to 9.08 but new uro said still too high and urged a biopsy. I thought that I needed a different course of antibiotics and he agreed to that for six weeks.

August 2013

PSA dropped again to 7.50, but free PSA; test was only 12%. At this point, I agree to a biopsy.

September 2013

Biopsy performed the trus showed my prostate was 100cc's and uro said that explains your high PSA and offered to discontinue the test but recommended going through with the biospy because of my low free PSA; %. I agreed.

October 2013

Results came out today. Showed one core positive for prostate cancer with approximately 10% and a Gleason score of 6. Another core was suspcious for carncinoma and another for high grade prostatic intraepithelial neoplasia--which I understand to mean pre-cancerous.

My urologist told me that he would do active surveillance if it were him under these circumstances. A follow-up PSA and DRE is scheduled for three months. He is also going to prescribe finasteride to try to get the size of my prostate down. I asked for this for two reasons, one to help with my symptoms and two to get it down to size where bracheytherpay is an option, which I would seem to ge a candidate for but for my enlarged prostate.

I would love to hear your thoughts on this. Did I make the right initial choice?

UPDATED

October 2013

I've gotten more comfortable with active surveillance since being diagnosed a month ago with Gleason 6 in 1 out of 12 cores--approximately 10% of the core with no perineural invasion identified. My urologist was OK with AS too. Quarterly PSA tests are in my future as are annual biopsies--though I may push my next one to 15 months because of how my insurance works. My uro even talked about 18 months before the next biopsy. I'm 56 and meet even the strict John Hopkins criteria for AS except for my relative youth (no health issues to speak of).

PSA won't be taken again until January.

My concern is this. In looking at the pathology report, it shows other things to think about in addition to that one core:

1. One sample "suspicious for cacrinoma" with "small focus of atypical glands" next to sample with carinoma.

2. One sample with high grade prostatic intraepithelial neoplasia--is this what we would call a Gleason 2+2 or 2+3?

3. Many samples with "atypical glands" and "atrophy" including one that shows a "small focus of atypical glands" adjacent to a nerve "which may represent partial atrophy in glands adjacent to a nerve", however "the possibility of perineural invasion cannot be entirely excluded."

It seems to me that I have a pretty unhealthy prostate and have for years. I know atypical glands can be caused by prostatitis (and BPH?) and it has been confirmed that I have all three prostate ailments--BPH, Prostatitis, and PCa.

I'm limiting myself to one helping of red meat a month (only one since diagnosis) no dairy and eating fish and vegetables. Japanese food I like.

I'd like to have a couple of years before treatment -- maybe early 2016 or longer if possible with such a generally unhealthy prostate that seems on the verge of being riddled with cancer. Am I probably safe in doing that if I have a biopsy rougly in the middle of those two years with quarterly PSA tests?

UPDATED

February 2014

I had my first post-diagnosis PSA test. After four months on finasteride, my PSA dropped from 7.6 to 2.89!

Here's my PSA history:

1/2007 - 2.1
4/2013 - 101.6
5/2013 - 19.4
7/2013 - 9.8
8/2013 - 7.6
2/2014 - 2.89

It seems to me that the drop from April to August was clearing up a prostatitis infection. The drop since August was treating BPH with Finasteride. Very little of this is cancer.

I'm seeing my uro day after tomorrow, but it looks like I'm staying on AS for awhile. Treatment may be more driven when Obamacare moves me off of my Cadillac Plan to a $10000 co-pay deductible. I didn't vote for him. That will happen no later than 2018, and I'll still have 5 years to go to Medicare after that.

UPDATED

February 2014

I saw my urologist today. My DRE was normal. He said that because my PSA has fallen so far and is now in the normal range, that a follow-up visit and PSA test can be pushed back six months. A repeat biopsy may not be needed for two years. This is a bit looser than the usual active surveillance protocol. But I'm comfortable with it.

The side effect of rhinitis--basically post-nasal drip may or may not be from the Proscar. I read that nasal irritation is a less common side-effect but has been reported. It could be completely unrelated but it did start shortly after I started Proscar in October. But the value of Proscar in likely reducing the size of my prostate, possibly controlling cancer growth, and improving my urinary system, outweighs sneezing a bit more than usual and some mucous in the back of my throat. It might find a way to deal with it when I see my GP next week for a general physical.

I also told my uro that my goal was to push off any treatment to 2017 and he said that if my PSA's stay low that is likely possible. In fact, he suggested that where Obamacare is headed if a repeat biopsy shows no significant change, I might have trouble getting insurance to pay for treatment.

I mentioned that I if I need treatment I leaned towards radioactive seeds. He said with the size of my prostate (100 cc's before the Proscar Rx), that would be difficult. I pointed out that the size is likely down significantly because the PSA dropped from 7.5 to 2.89 in about four months. We basically left it as "we'll cross that bridge when we come to it".

All in all, very good developments. I'll check in again in about six months. Thanks to Terry and all for putting this site together. It has been of great help.

UPDATED

October 2014

I am happy with active surveillance. My PSA started with a high of 101.6 about 18 months ago as a result of infection and after treatment for the infection and a year on Finasteride, it has dropped to 2.67 (2.89 seven months ago). Clearly, the high PSA was the result of BPH and and infection. That I submitted to a biopsy as a result of this got me diagnosed with prostate cancer that appears to be one of the "academic" kinds. It may have been better for me psychologically if it was never diagnosed. I spent a great deal of time worrying about it through April '13 to February '13 and wasted a chunk of my life needlessly.

My advice: If you have a strong indication that a high PSA is caused by infection or BPH--consider Proscar or Adovart. I know they come with the FDA warning that they may mask cancer, but my understanding is that that is inconclusive. I don't see my urologist until next week--if he feels something in the DRE, I'll let you know, otherwise I'll check-in in 6 months.

It was sad to hear about the passing of Terry. He helped me out so much and made this problem easier for me.

UPDATED

July 2015

Just got my PSA results and they came back at 2.15, a continued downward trend. Since I still have my prostate, this is good. I have been on a weight reduction program for the last 7-8 weeks and have lost 35 pounds. I probably have about 30 pounds to go. I've been hiking 20 mile day hikes as well.

I sort of expected the PSA reading to go up because some of my other prostate ailments like sudden urges and getting up at night seemed to worsen a bit within a few days of starting the diet. That apparently is a function of the higher volume of liquids I have been consuming as part of the diet and doesn't effect PSA or it might in that healthier living means a healthier prostate.

My urologist, who I am seeing day after tomorrow, last time thought another biopsy is due within the next few to several months. I'll see what he says.

To my friends on this site, I wish you all the best and hope you will have a longer life because you started taking care of yourself when you got this usually very survivable type of cancer. It took me a year or so, but making the decision to get into shape because of the diagnosis will probably save me from other things that would have gotten before prostate cancer did.

Life if is good. Social life is better too.

UPDATED

March 2016

I hadn't had my PSA checked since July (about 9 months). It came back today at 2.17, up from 2.15. This is the first increase I've had since I started down this road about 3 years ago when I had a 101 PSA; caused by prostatitis. But it's really just statistical noise.

I switched urologists and my new one is not even sure I need a biopsy. They found 2 1/2 years ago just one of twelve cores with 10% cancer Gleason 6. He thought highly likely my PCa is non-aggressive but thinks a biopsy would be useful to confirm that and that I may not ever need another one.

I'll probably schedule it in a couple of months.

I've been blessed and I hardly think about this, except the week before my test.

UPDATED

September 2016

I had my six-month check-in for active surveillance since being diagnosed with prostate cancer almost three years ago. My urologist said my PSA is remarkably stable and the finger test revealed nothing. I was inclined for a repeat biopsy--I'm 2x past due. But he said he wouldn't if he were me. He said if we missed something given your PSA's, it would be a case for the medical journals. He also said it was unfortunate that the cancer was discovered because it's very likely mine is the kind that will never be an issue.

During the last visit he said that if I did one more biopsy, that it was possible they wouldn't find cancer given the size of my prostate (which causes other problems--another reason for my visit).

I am somewhat curious how much finasteride has reduced the size of my prostate, so I may go ahead and do the biopsy. I have flex plan money set aside to cover my out-of-pocket expenses.

I am very lucky. I thank God for these blessings and wish all those on this site good health and low PSA's.

UPDATED

April 2017

Just got my PSA results and they are lower at anytime since it was first measured in my late 40's. I still have my prostate too. My urinary symptoms from BPH are improved too -- never have to get up in the night. That probably is reflected in the lower PSA. I am seeing my urologist this afternoon and I expect he will say no need for a biopsy and it has been about 3-1/2 years since my last one.

The only urinary type symptom I have is a sudden urge to go when I am taking a long drive. My urologist said that is function of the extra coffee I drink on such trips. Duh.

Unless my urologist surprises me, this will be my regular six-month update.

UPDATED

October 2017

I had my six-month follow-up. Last time my urologist thought I should think about another biopsy since it had been over three years since my last one revealed only 10% Gleason 6 in one of 12 samples. This time he said the protocol is that I should have a biopsy but really doesn't think it is necessary. My PSA has bounced around 2 for almost three years now. I think I will go in for a biopsy next year, because he said that there is good chance they will not find cancer and to be safe.

Jack's e-mail address is: pdxguy1 AT comcast.net (replace "AT" with "@")


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