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

Steve Z lives in the USA. He was 58 when he was diagnosed in May, 2007. His initial PSA was 2.50 ng/ml, his Gleason Score was 6, and he was staged T2a. His choice of treatment was Uncommon/Unconventional (Cryotherapy - Focal). Here is his story.

I went to a urologist because of urinary frequency and nocturia (having to get up to go at night). My (then) family doctor didn't explain the possible significance of my PSA being up to 3.37 from 1.26.

After trying me on Uroxatrol and Detrol LA (didn't help), the urologist recommended a conventional TURP (Trans Urethral Resection of the Prostate) procedure (that he happened to be able to do). Researching this on the web, I learned that the green light laser procedure was better, so I found a local urologist who did those. This urologist did a cystoscopic exam that revealed "prostatic urethra visually occlusive and a small intravesical component of the median prostate lobe," so a TURP should help. My PSA was 2.5 with 20% free PSA. He also said that a DRE (Digital Rectal Examination) showed a slight difference in firmness of sides of gland; I should note that the DREs involved with these exams were more painful than any of the many I had had previously. He recommended a biopsy that was done on May 16, 2007.

The biopsy found prostate cancer:
Stage: T2A
Estimated prostate size: 28cc
Gleason score: 6 (3/3)
2nd Opinion of Gleason score: Bostwick concurred Needles in biopsy: 10 Cores positive: 2 same side, the one softer by DRE Percent cancer: less than 5% both positives

I should note that my symptoms decreased markedly after I took antibiotics to prepare for the biopsy. Historically, my PSA has been up and down. It is likely that prostatitis is what my major complaint was, but neither my family doctor nor two urologists ever mentioned prostatitis. I was never treated for it specifically.

My urologist recommended a RP (his practice does the robotic procedure), citing my age, and saying I could be cured, potent and continent. He lent me the American Cancer Society's Complete Guide To Prostate Cancer by Bostwick. I read it with interest and determined that what he was offering me was really a 50% chance to remain potent, 95% chance to remain continent and a 95% chance of being cured (cancer free). Given my biopsy and PSA scores, there is a 30 to 40% chance the cancer was indolent, and would never threaten my life. The book also said that the odds of having a good surgical outcome were better at a "center of excellence", and my research indicated that Mani Menon, was likely to offer a better outcome than anything done locally. Given my family history - an aunt who died of breast cancer, (she was childless and had been on first-generation high-estrogen birth control much of her adult life) and no male in my family ever diagnosed with cancer of any kind - the risks (to me) seemed to outweigh the benefits.

I should note that I came down with a urinary infection (my first ever) about three weeks after the biopsy that was cured by antibiotics. I understand that this is not uncommon.

The urologist sent me to a radiologist and a urologist in Boston who also recommended RP. Neither offered anything to improve any of the odds, except that radiation offered a more gradual potential loss of potency with a greater risk of the cancer returning.

My next PSA test came back then 2.6, almost identical to the last one. At this point, I told the urologist I would like to do watchful waiting with DRE, PSA and ultrasound every 6 months, and if the cancer could be shown to be growing, I would have the operation at the Vattikuti Urology Institute. He said that his practice did not have an active surveillance program and sent me to one who did. This urologist wanted a re-biopsy at one year and biopsies every three years there after until age 80. I said that I had no interest in living biopsy to biopsy, and asked if he knew of a urologist who would work with me on that basis. He did, and I'm now monitoring PSA with him. He feels that in the great majority of cases, PSA will increase with a growing cancer. Although this is not always true (and the studies I have read indicate that none of the indicators always work), I feel I have an excellent chance that it will work that way with the Gleason 6 cancer my biopsy showed. My last PSA test came back 1.5 with 20% free PSA. DRE still showed a softer gland with a slight asymmetry but no masses. My symptoms are stable – so far, so good.

I have been retired for five years and live a healthy lifestyle: eat a varied diet with limited red meat, run about 1000 miles a year, enjoy an active sex life with my wife of 37 years, and try to stay low stress. Since the diagnosis, I take a Centrum silver equivalent, vitamins C, D, and E; selenium; ground flax seed; and naprosin daily. My overall health is great.

Dr. Scardino's nomograms are telling me that I have about as good a chance of living with the cancer (PSA doubling time of 27 years, 49% chance of indolent cancer) as I do of coming out of prostate surgery cured potent and continent (less than 50% overall). A TURP might help my symptoms, but it might complicate an RP if that has to happen. At this point, my main complaints are having to get up twice a night to go, and some depression, mainly showing as the edge of excitement having gone from looking forward to activities, trips and major events - things I was excited about before the diagnosis.

This site is some encouragement. Many are living with numbers worse than mine. No one wants to have cancer - I hope this forum will help me take a more positive outlook to my situation.

PSA testing history:
8/95 - 1.4;
6/01 - 2.95;
10/03 - 1.74;
12/4 - 1.26;
3/06 - 3.37;
free PSA tests
3/07 - 2.5 w/20% ratio;
11/07 - 2.6 w/11% ratio;
5/08 - 1.5 w/20% ratio.

9/08 – 2.53

UPDATED

October 2008

Late August 2008

I had been going to a therapist since April and we concluded that a good part of my depression stemmed from the PCa diagnosis. In addition to putting up my YANA posting, I started going to local support group meetings, e-mailing people and reading more on the web. I came to the conclusion that I would need to have another biopsy soon if I wanted to have an effective method of Active Surveillance.

In the process I learned of focal cryotherapy – cryo directed just at areas of cancer rather than applied to freeze the whole gland. I had originally dismissed cryo because freezing the entire gland normally results in impotence. Its plusses were that it does destroy the cancer and it almost never results in incontinence. Practitioners of focal therapy included Dr. Gray Onik in Florida who pioneered the technique and Drs. Barqawi and Crawford at the University of Colorado Cancer Center in Denver. Talking with patients whom they had treated convinced me that they were both good options - I choose Dr. Barqawi because I was able to speak with him easily on the phone and because of insurance considerations.

Step one of this process is a 3-D mapping prostate biopsy. For a prostate of my size it should take about 48 needles – not a walk in the park, but something that will really tell me what the extent of my cancer is, and make me either comfortable with active surveillance or more comfortable with a treatment decision - focal cryo or other. The needles are applied in a 5 mm grid pattern and the biopsy results are combined with the ultrasound image of the prostate. Gold seeds are implanted as reference points for the cryo probes if/when they go back to treat.

To eligible for the focal cryo, I need:

  1. Small cancer volume of less than 30% of the total prostate volume.
  2. Localized prostate cancer areas which are confined to the prostate.
  3. The cancer is a safe distance from the vital organs.
  4. Gleason 7 or less.

If I meet the criteria, I could go right to the focal cryo in a matter of weeks after healing from the biopsy. This seems like a better course than surveillance. Potency is maintained in about 85% of those undergoing the focal procedure, and continence is running near 100%. These are odds I'm willing to face. The down side is that there is no way this is as sure a treatment as prostate ablation or removal, and since I'll still have a prostate, my PSA will always be something other than that .0x it's so good to see after "definitive local treatment". I feel that, worst case, any cancers that fit through the grid will be so small that whatever mechanisms the body uses against them will have a better chance to work, and that it should take a number of years for the cancer to again reach the size of the primary lesions.

In less than scientific terms, it seems that the smaller the amount of cancer and the less time it has to grow, the lesser the chance that it will develop into something that will threaten me in my lifetime.

Early September 2008

My wife and I flew to Denver on September 4, met with Dr. Barqawi, and I had the mapping biopsy done as day surgery on September 5. This cost $4,800 and was not covered by my insurance as it is considered an experimental procedure. The pathology report from Bostwick Labs was billed separately and mostly covered.

Everything went as advertised. Heavy sedation made the procedure itself painless. It was a somewhat rude awakening afterward with some pain and the catheter (removed after 24 hours by my wife), but the problems were mostly over soon after. I only needed Vicodin through the second night that I took for sleep more than for pain. Dr. Barqawi also had me take an antibiotic and Flomax. A little hematuria (blood in urine) persisted until about 60 hours after the procedure.

A bit of a scare the third night when I had a weak stream when I got up to go in the middle of the night (sometimes swelling or blood clots can cause blockage and require you to be recatheterized), but that improved with subsequent goes. I recovered from the biopsy without adverse effects. It was definitely more rigorous than the 'standard' 12-needle variety - my ejaculate was more blood than semen for the first two weeks and still had some brown in it five weeks after the procedure.

My PSA has stayed low (2.53) which is a good sign. I should find out the biopsy results the following week. Dr. Barqawi says he thinks I have a 50% chance of being eligible for a focal procedure. I'm sure hoping that will be the case and that I'll get off easy. Based on the results of his past biopsies, there is also a ~10% chance that they won't find cancer at all. I remain hopeful and appreciated my family's support. I don't know what I would have done if they had tried to badger me into a "definitive local treatment" that made little sense to me.

The pathology report came back the following Thursday. It was music to my ears. He took 51 cores and only 2 of them came back positive – both 10% cancer. The Gleason score which measures aggressiveness remained 6(3/3) so this is not aggressive cancer, and not one that I should fear has metastisized. There was one area of PIN as well, near to one of the areas of cancer. What I had not understood was that the biopsy results do not place the cancer location in the biopsy tissue column, i.e., you know which hole the cancer is in, but not how far down in the hole. Still, this gives the cryosurgeon a location to treat. He implanted two gold seeds as navigation points should he need to go back for treat.

Based on the results, I could safely stay on a surveillance routine, but I'd rather have him treat the cancer while the data is current and avoid another 51 needles sometime in the future. According to the longevity calculators, I should live to between 91 and 95, and I don't think I want to know I'm walking around with cancer for the next 30+ years. He should be able to do focal cryo with a low likelihood of side effects (especially compared to "gold standard" treatments - RP and radiation) – ED initially 20 to 30 percent and improving over six months to about half that; very low probability of 'injections or implants' ED or any incontinence.

After I had scheduled the procedure and made the airline reservations, I did have a moment of doubt. Going into the biopsy, I knew that there was a good chance that a lot more needles could come back positive and that he'd find higher Gleason score disease. Once you are past that and know you do indeed have low volume disease, the ED probabilities take on a renewed importance. I wrote Dr. Barqawi an e-mail that he answered with a phone call, and I felt much better after talking with him. It's still cancer, it's in more than one place, it still can progress - focal cryo is a good balance of effective treatment vs. quality of life. I also wondered about the other side of the coin; if I want a more definitive result, then I can have an RP and risk much greater odds of morbidity – no thanks.

October 2008

My wife and I flew back to Denver and met with Dr. Barqawi on Thursday, October 9 and he did the focal procedure the next day. He froze (froze and thawed twice actually to be effective) the two areas of cancer and an area of PIN as well as another small area. This totaled about 50% of my prostate. This was more than the third or so he had estimated he'd have to do initially to cover the cancer and PIN; he froze another site opposite the cancer fairly near the bladder neck to keep things more symmetric, improve flow and prevent future constriction. All treated sites were clear of the nerve bundles, rectum and urethra. The procedure was done under general anesthesia. The University of Colorado Cancer Center staff was great!

Kind of strange, I came out of the general anesthetic quicker than from the heavy sedation of the biopsy. Within an hour, I felt better too (less discomfort) - there were no incisions and fewer needle punctures. It takes a while for the cells to die, so by day three I felt discomfort (deep ache) that lasted until day ten. I didn't need to take any of the Vicodin, but did take an antibiotic and Flomax. I was on a catheter for five days. Dr. Barqawi said that it will take two to three weeks for more tissue to die, the dead tissue to be absorbed or sloughed, scar tissue to grow, and the organ to reorganize and function, so I'll be taking it easy until then. I was continent but leaking small amounts of pinkish fluid when the catheter came out, not urine, probably cellular ooze. Dr. Barqawi said not to worry, and it was gone after the fifth day, along with the weak stream I'd been experiencing. I started on low dose Cialis when the catheter came out and was pleasantly surprised that the 'let's see what happens, dear' eleven days after the procedure turned into normal intercourse. Hard not to be a cryo fan.

I'll need to have follow-up PSAs at 3 and 6 months – I haven't been high PSA and we're hoping to see a number less than 1.0. I'll have a 12-needle transrectal biopsy in a year. If that comes up negative, it will be the first biopsy that has. There will be more biopsies afterwards if I stay with the clinical study my treatment is part of.

I've got to feel that focal cryo is a good option for guys like me who have low volume Gleason 6 disease but are too young to ignore it. Biopsying on a 5 mm brachy grid will find the same cancers a pathologist would find on a removed gland, and the cryo will kill it with greatly reduced likelihood of ED or incontinence and leave all treatment options open. The urologist are correct that it will be experimental until the numbers start coming back in 15 years or so - so were women's lumpectomies until about 5 years ago.

There is information on focal cryo at:

Has The Time Come For Focal Therapy Of Prostate Cancer?

Riverside Urology

Male Lumpectomy (Onik invented the procedure) [Terry: I'm not 100% sure that Steve is correct here, but Dr Onik was certainly in the pioneering group]

UPDATED

February 2009

Things have gone well since my last post.

I quit the low dose Cialis after a week. For the first few weeks off the catheter, it was urination every couple of hours – day and night. The wake ups were accompanied by erections. That got old fast. After that, erections were a bit more difficult to achieve and maintain, and not as firm as before; orgasms were weak. My wife and I stayed with regular sex every two or three days as the best way to help with recovery and things gradually improved.

Urinary function improved as well. Dr. Barqawi had promised to improve my flow, and he did, but the real benefit was that I started sleeping through the night without having to get up and go for the first time in many years. Focal cryo did what a TURP (that I figured I'd have to have eventually) would have done.

By the three month point, sexual function was back up to pre-op levels. The only side effect is less ejaculate. My three month check-up went well. PSA was 1.7, down from my usual 2.5, DRE was smooth and normal, flow test and urine retention both fine.

I will get another DRE and PSA at the six month point. The big test will be the rebiopsy at the one year point.

I would like to add that Johns Hopkins is now running a clinical trial on focal cryo for patients with low risk PCa.

UPDATED

April 2009

I am six months out since my focal cryotherapy procedure. Am still sleeping through the night and feeling that if it weren't for that, I wouldn't know that I'd had the procedure.

My six month DRE and PSA came back: normal DRE, PSA 2.6 - back up a little from the three month reading of 1.7. I would have liked to see it continuing down, but it does take about a year for things to sort themselves back out down there after the trauma of treatment. I had noticed a couple of black pepper grain-sized dark flecks in my semen on a tissue a couple of weeks ago so there must still be some healing in progress.

Another positive note - the University of Colorado Hospital resubmitted my insurance claims and got most of what was done approved. I'm only out of pocket about $2000 for both the mapping biopsy and focal cryo procedure now. I felt that the money had been well spent, but it's sure nice to have it back.

I'll be going back to Denver for a re-biopsy and the other tests the trial protocol calls for at the one year point in October, and I'll update again then.

Meanwhile, it's fly rod therapy for me.

UPDATED

November 2009

My biopsy results were not what I'd hoped for: 12 needles found two small (10 and 15%) areas of Gleason 6 cancer again on the right side that either the cold didn't kill or the focal treatment missed. The latter is likely the case: if you do the math on the biopsy data, the areas of cancer were 2mm maybe 3mm at the most, the grid for the mapping biopsy was 5mm; if you move the grid a mm or so you'll find different small cancers. PSA was a little higher at 2.85. After some amount of time, pain and expense, I'm pretty much back where I was just over a year ago. I'm more disappointed and irritated than scared and angry. Dr. Barqawi (and Dr. Onik) continues to report 90% success rates with this type of procedure - I feel like I drew the short straw. At least it did reduce the size of my prostate from 34 to 27 CCs and almost doubled the amount of uninterrupted sleep I get each night. All in all, I'd rather be posting this than asking for advice on how to deal with ED, continence and/or bowel issues in the forum. Low morbidity treatment is a good thing.

I know now that this is still low risk cancer that I can live with. I'm still not inclined to go for surgery or radiation and will likely try surveillance maybe with Avodart for the next year with PSAs every 3 months and a rebiopsy at one year. This kind of regiment does not seem as bad to me as it once did. Nerve sparing cryo to ablate the entire right side is an option. I'm certainly in no rush at this point, but should the numbers get worse…

I'll post my next PSA results in 3 months.

Thanks, Steve.

UPDATED

June 2010

My last 2 PSA tests were:

January, 2010 - 2.43

April 2010 - 2.71

Given my prior numbers, it appears that I'm looking at normal variations of a stable PSA. Still a little disappointed that the focal cryo didn't get it all, but 'them's the breaks'.

I am still getting 6 to 7 hours of sleep before getting up, and continue to enjoy life without sexual side effects. I'm feeling a lot better about being on a surveillance routine. Life with cancer can be fine.

Cheers, Steve Z.

UPDATED

January 2011

January 2011 A little over a year on surveillance later: quarterly PSAs all under 3.0, no change to digital exam - time for another TRUS biopsy, this time by a local urologist with a surveillance protocol. Good news - only one core positive (35%) still Gleason 6 cancer.

By the protocol, no re-biopsy for another 3 years with PSA every 6 months. After 85 needles in the last four years, that's a big relief:-)

Prostate cancer is something that I can live with, and every day I wake up potent and continent is a pretty good day.

UPDATED

October 2012

Over a year and a half and three more PSA tests later: PSA tests have all come in under 4 - sexual and urinary function continue to be fine.

I'm definitely used to living with prostate cancer. About half the men my age are - most of them just don't know it.

I'm 64 now. I sure hope that the cancer is 'just there' and not growing. That could make for more hard choices down the road. Over eighty biopsy needles have never found anything worse than Gleason 6. About a year and a half until my next scheduled biopsy.

In the meantime, I hope to see progress toward better imaging of small tumors and treatment as kind as my focal cryo was - only more effective.

Cheers!

Steve Z

UPDATED

November 2013

November 2013 - I turned 65 in August - am continuing on my active surveillance program. July's PSA came in at 3.6. I've got 17 years of PSA data behind me. It shows a gradual, lineal increase within a range of variation.

My next 3-year biopsy is scheduled for January. Here's hoping that it continues to show only small amounts of Gleason 6 PCa. I've read a couple of abstracts in Urology today that seem to indicate that the grade of PCa doesn't increase over time - definitely encouraging. After all the needles I've seen over the last seven years (I think I was up to 85 after the last biopsy), they've never found anything worse than pattern 3 cells.

UPDATED

December 2014

December 2014

Year eight of living with prostate cancer. Urinary and sexual function still good. PCa remains part of my life but not what defines it.

Last January's 12 core biopsy came back OK: Just one positive Gleason 6 core, but the percentage up to 55% surface area after a slight PSA spike to over 5 from mid-3s. Subsequent PSA in July was 4.74. The pathology report also indicated perineural invasion present, but everything I've read lately says that that's not a factor that increases risk. I'm still within acceptable limits for the active surveillance protocol.

Last January's biopsy wasn't a walk in the park. I had been taking over 600mg/day of Omega 3s, and at higher doses, that thins blood like NSAIDs, so I there was significant blood in my urine, and some difficulty voiding after the procedure. My urologist (who had recently moved his office) said that I was given an obsolete prep form which does not include warnings about supplements. Lesson learned, but not a confidence builder.

I also had Oncotype DX www.oncotypedx.com do a Genomic Prostate Score on the biopsy. It came back a 35. This is "low risk" predicting: 68% favorable pathology, 79% freedom from any high-grade (Gleason pattern 4 or 5) disease, 75% freedom from non-organ-confined disease. I would have liked to have seen a "very low" - after having had about 100 biopsy cores, these results were unremarkable.

I'm really starting to dread the re-biopsies. This is the most painful and invasive procedure that I can think of that is routinely done without sedation. That may have been OK if you only have it done once, but now that I know what's coming...

I looked into finding a practitioner who uses MRI of some variety to monitor prostate cancer, but did not find anyone credible. One doc I talked to said he could tell what was prostate cancer with MRI, and I'd better get on with it because repeat biopsies spread the disease through needle tracking. Since this is something the literature says just isn't true, he did not seem a good choice. The literature seems mixed on the ability of MRI to determine what's prostate cancer EXCEPT that it is helpful in directing where to place those biopsy needles. Funny how it seems that all roads still lead to more diagnoses.

If anyone finds someone credible with a MRI-based surveillance protocol, please let me know. 2017s will be here in no time.

UPDATED

April 2015

January PSA was 4.5 - headed down:-)

I looked into finding a practitioner who uses MRI to monitor prostate cancer. I found that Dr. Clare Tempany-Afdhal at Brigham & Women's Hospital in Boston (ctempanyafdhal@partners.org) is using 3-T MRI to detect clinically significant (pattern 4) prostate cancer. My urologist suggested the Sperling Prostate Center in New York. My active surveillance may be entering a new phase...

You may find and contact me through http://prostatecancerinfolink.ning.com/

UPDATED

May 2016

Still on active surveillance. PSA in January back to 4.55 from 4.65 in July.

Urological and sexual function still good.

I learned about that study published by Johns Hopkins last year done on men with low risk prostate cancer: 1300 man cohort, only 2 deaths due to prostate cancer. Repeats similar results by Klotz. Definitely a confidence builder.

I refuse to have more needle biopsies (next one due early 2017) so I am working with my urologist on finding a doctor who can do MRIs to replace them. I have been having at three-year intervals.

UPDATED

June 2017

Still on active surveillance. January PSA under 5.

Urological and sexual function remain good.

This year, we changed my active surveillance protocol. I was done with any more biopsy needles, and replaced TRUS biopsy with prostate MRI. My urologist worked with Dr. Claire Tempany of Brigham and Women's Hospital in Boston to set it up in February. The procedure took a little over an hour, but was much kinder/gentler than a biopsy. There was some discomfort with the anal probe that is inserted (and they didn't show it to me), but it's a lot better than waiting for the click and pain that TRUS biopsies involve.

The results are graded 1 through 3: 1 is benign, 2 possibly low grade prostate cancer, 3 prostate cancer that is a concern. My results confirmed what over 100 biopsy needles had continued to say: an area of low grade cancer, not near the margins of the gland.

My urologist wants me to do another MRI in two years, and I'll likely have it done. If the results are similar, then at age 72 I will have been under treatment and surveillance for 12 years. At that point, I believe that there willl be little enough doubt that MY cancer is indolent - not growing, not going away, just there - that I should not expect to die from it and will be comfortable just living with it.


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