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Robert E and Susan live in New Mexico, USA. He was 55 when he was diagnosed in November, 2009. His initial PSA was 10.00 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.

I have been chasing the reason for higher PSAs, urinary frequency and reduced flow for several years. I had my first biopsy several years ago and it was negative. About six months ago I had to get catheterized because I could not urinate. I was placed on Flomax and Finasteride and, among other tests, I had another biopsy which came back with one suspicious core. Three months later I had another biopsy with a few extra cores in the suspicious area and it came back with one core showing less than 5% of a Gleason Score 6 carcinoma, stage T1c.

The urologist (surgeon) gave me all the options and stated that if it were him he'd probably go the watchful waiting route. He stated that the only sure cure would be prostatectomy and that if I chose radiation and it fails then prostatectomy will not be an option anymore because very few surgeons are capable of removing the prostate after the tissue changes that occur after radiation. He was very upfront about the possible side effects of prostatectomy to the point where I really felt that I could expect enough problems to seriously effect my quality of life. He also stated that, given my age (55), the chances of my not having to undergo some sort of treatment before I die of "old age" are pretty slim. He qualified this by telling me that my chances of dying from another cause were greater than dying from this cancer.

We will check PSA every 3 months and do at least one biopsy a year along with the DRE (Digital Rectal Examination). My PSA does not seem to correlate with the cancer because it has been around 10 for many years so I would probably feel safer with a biopsy every 6 months.

It is a little discouraging to see how few men with my diagnosis have opted for watchful waiting. [That is because there is so much pressure on them to 'do something'] Although it is nerve wracking right now to be living with the thought that I have cancer I feel that living with the possible side effects of treatment would be worse. Also, I really had to look hard for this little bit of cancer and I feel like there's probably a lot of guys out there that have it and don't know it. I'll see how it goes for the next few years and will probably accept my urologist's recommendation for treatment if he feels it is necessary.

Later: Since my last post I have sent my biopsy slides to Dr. Epstein for confirmation of the Gleason stage (not back yet). I have also visited with an oncologist, Dr. Calvin Han at St Vincents in Santa Fe. If I were to go ahead with treatment at some point I would probably go with brachytherapy providing they can shrink my prostate (it is 57gms or cc--strangely, a cc of prostate weighs 1 gram). [Not really so strange, given that we humans are mainly water - and a cc of water weighs a gram!] I do not look forward to the hormone therapy to shrink the prostate, but the brachytherapy would be most convenient for me. External beam radiation (photon) would be a lot of traveling and proton would require me to live away from home for 2 months. I was leaning toward proton beam for awhile because I kept hearing it has less side effects--however I can not find any reliable studies to substantiate this. Also, Dr Han worked with the proton beam in MA and does not feel it has any substantial advantages. The recovery from RP would be too long and, having had the experience of a catheter for 3 straight days, I don't think I could face it for 2-3 weeks.

Meanwhile, I am living with cancer. I am looking forward to my next PSA in Feb '10. I was never told you should abstain from sex or bike riding prior to a PSA test. I have ridden an exercise bike everyday for about 30 years and never abstained before a test. I am hoping that at least some of my prostatitis and possibly my elevated PSA may be due to this. I recently bought a special seat without the anterior horn.

Later: Hey! I had my last biopsy slides sent to Dr. Jonathon Epstein for a 2nd opinion and he found no cancer. He did find several areas that were "highly suspicious" so I can't relax too much--but it looks like better news than the first pathologist gave me. By the way--the first pathologist stated in his letter that his diagnosis was confirmed by three of his colleagues.

I guess I'm a confirmed "watchful waiter" until further notice. I'm not going to gloat--for all I know the next biopsy will show Gleason 9.

UPDATED

February 2010

I had my first three month PSA under the watchful waiting regimen. It is now 4.8 which, at least, confirms the studies on Finasteride effect on PSA. I started taking Finasteride about 6 months ago. Good news that after doubling this value to 9.6 it is no higher than my last score of 10.

I have been able to stop Flomax. I hated the orthostatic hypotension. I may be one of the few whose urinary symptoms are alleviated by the Finasteride.

Getting an equivocal diagnosis on my biopsy slides by Dr. Epstein has helped my frame of mind. I believe that I will have to deal with prostate cancer sometime in the future, but I no longer think about it everyday.

UPDATED

June 2010

Had my 3 mos watchful waiting PSA; and it went up to 6.7. As I understand it, I have to double this value because I am taking finasteride which means my PSA is close to 14. [As Robert says, Finasteride does reduce the PSA, mainly because it reduces the size of the prostate gland. Studies have shown that the average or median reduction is about 50%, but this figure does not apply in all cases, so PSA levels cannot simply be doubled.] Bummer. But I am due for the 6 mos watchful waiting biopsy anyway.

I am a bit worried and I'm back to thinking about treatment options if they find cancer. It doesn't help that they just buried Dennis Hopper here in Taos. I understand he was dx'd about 10 years ago.......

UPDATED

August 2010

I had my scheduled 6 monthly biopsy about month ago and had it checked by Dr. Epstein when it again came back positive. This time he agreed with the local pathologist--one core with less than 5% gleason 6 cancer. It was same as the last one EXCEPT that the cancer that was found was in the base of one quadrant (?) rather than the apex. Taking the previous biopsy into account this means that there may be cancer in the apex and the base of this quadrant.

My urologist is still offering Watchful Waiting as an option but suggests a biopsy every 6 months. He agrees that my PSA must be doubled to 13.4 because of the Finasteride effect. He continues to believe that PSA is non-diagnostic for me because of the size of my prostate but we will continue the PSA tests every 3 months because the PSA shooting way up may be a red flag.

If I decide to go ahead with treatment he thinks brachytherapy would be best for me. This treatment would be less disruptive to my work/family life than surgery or external beam radiation and the cancer is benign enough and contained enough that the need for surgical re-treatment is pretty slim. Even though my prostate has shrunk by 30% it will still be necessary to be placed on hormones to shrink it further before the brachytherapy. These hormones and the diarrhea associated with radiation will probably be the worst part of brachytherapy. He feels that the side effects of incontinence and ED are less likely with brachitherapy.

He believes that proton beam has just as many side effects as any other treatment. Right now I'm still leaning toward checking the cancer every 6 months to a year with a biopsy........

UPDATED

November 2010

Had another 3 month PSA. 7.74 this time. Since I'm on Finasteride I guess it has to be doubled to 15.5.... [As mentioned above, it is not appropriate in all cases to merely double PSA results if you are taking Finasteride. Better rather to use the post-drug results as a new basic result.] Not sure what the increase means. It was done by a different lab. [It is simply not possible to compare results from different labs even if they are using the same equipment. There are too many variances.] I am not sweating it.

I haven't talked to my urologist yet. He wanted to biopsy every 6 months. I'm leaning toward a year so maybe I'll call him at 9 months. I think we'll be relying mostly on the biopsies unless the PSA goes unusually high.

UPDATED

January 2011

PSA now 6.1 - done by the same lab as the last one. I am going in for my last six month biopsy today. If there is no change we may switch to one year intervals.

Anybody read "A Private Battle" written by Cornelius Ryan (The Longest Day) and his wife? Not a good death. There's a good chance this disease is over-treated, but as my father used to say "odds are good, but the stakes are high".

Later: My biopsy was negative except for 2 small suspicious areas. Looks like I'm on 12 month biopsy schedule now unless the PSA shoots up.

I did some reading on the effect of Finasteride on PSA. It looks to me like unanimous agreement that your PSA value must be approximately doubled if you're taking it--hence I doubled my last reading before the biopsy and any other results I get will be doubled before posting. I'd be happier about the biopsy if the cancer hadn't been found in the first place.... and if I didn't know that a PSA above 10 might as well have a skull and cross bones attached. [It is not clear where Robert gets this idea because it seems that it is incorrect. The dangerous forms of prostate cancer are typified by high Gleason Scores and a Gleason score of 10 would certainly be considered dangerous. But a review of the men who were diagnosed with a PSA of more than 10ng/ml demonstrates that a high PSA in itself is not intrinsically dangerous.]

"Odds are good but the stakes are high."

UPDATED

May 2011

My recent three month PSA was 8.8. Doubling that to account for the Finasteride it comes to 17.6. If the trend continues my doubling time will be less than three years.

UPDATED

July 2011

PSA now 4.1. Weird. No idea why it should suddenly halve itself.

I did recently quit simvastin and started a cholesterol lowering diet.... This "diet" is a bit different than what I usually thought of as a diet in that it concentrates on what you have to eat everyday not what you should avoid. Actually, by the time you get done eating all the stuff she tells you to you don't have much room for anything else. The book's called 'Cholesterol Down' and I started it because I finally figured out I had most of the side effects associated with simvastin: fatigue, joint pain etc. It includes two helpings of oatmeal, two tablespoons of ground flax seeds, two medium cloves garlic, one apple, 30 almonds, and a certain quantity of soy and beans. My cholesterol is now normal w/o the simavastin.

If I had to guess what, if anything, this diet has to do with lowering PSA I would guess the garlic is what is doing the lowering. I eat the pickled or brine soaked stuff...

UPDATED

April 2012

For my active surveillance regimen my doctor has me on 3 mos PSA intervals and yearly biopsy. My PSA in October was 4.7. The latest PSA in January 2012 was 5.5. My last yearly biopsy in Feb 2012 showed basically the same thing as my original DX;1 or 2 cores with less than 5% Gleason 6. It is no longer negative and I did not expect it to be, (but it would have been nice--maybe next year!). I guess the fact that I don't know exactly how many cores showed cancer shows how comfortable I have become with active surveillance.

I had been toying with the idea of cutting out the Finasteride until I had reduced stream again for a few weeks. I have not suggested it to my doctor yet.

Anyone have any thoughts on this?

UPDATED

February 2013

Still watchful waiting. PSAs: 4/26/12--5.7, 7/26/12--6/1, 10/27/12--6.4. My last annual biopsy was negative; 2 cores with rare atypical glands, the rest were normal. My doctor has doubled the number of cores in the area where cancer was found previously. It looks like there were 16 cores altogether. I'm 3 years in and he says this is exactly what you want to see with active surveillance.

I'm still on Finasteride so the PSA must be doubled. I think the Finasteride has reduced my libido a bit. Doc says 2 PSAs a year along with the annual biopsy will be okay.

At any rate, I hope some of you guys just diagnosed will pause a bit before doing the irrevocable.

UPDATED

June 2013

Latest PSA 6.8.

UPDATED

January 2014

Latest PSA 7.0. Going in for yearly biopsy in one week.

UPDATED

January 2014

Yearly biopsy Jan 2014: 12 cores, 11 normal, 1 with less than 5% Gleason 6. Doc advised 6 months PSA and another biopsy in Jan 2015 (assuming no crazy PSA)

UPDATED

June 2014

June 2014 PSA 7.5--still watching and waiting.

UPDATED

June 2015

Yearly biopsy (Jan '15) showed 4 cores (out of 12) with < 5% Gleason 6. PSA 8.5.

Doc recommended DRE in June in addition to PSA since the cancer seems to be increasing in volume. PSA in June '15 was 9.7. I haven't gone for the DRE yet.

Part of the reason I haven't gone yet is the travel time and deciding that any MD could check the prostate for lumps. Big mistake. Made an appointment with someone local and instead of a DRE got a lecture on how "with your PSA numbers something has to be done about it" including an immediate biopsy. I told her I had been diagnosed 5 years ago with Gleason 6 and had had yearly biopsies for 5 years and was on active surveillance. She had not heard of active surveillance. She advised me that if I was looking for alternative treatments I should look into large doses of vitamin C as this was a proven treatment for prostate cancer. I could find no legitimate studies confirming that. This encounter really did nothing for my equilibrium. Can't help wondering if some MD's just like to scare people.

My urologist is obviously concerned about the apparent increase in cancer volume. I'll go in for the DRE and if normal will go for another PSA and biopsy in Jan '16.

UPDATED

July 2016

Last PSA 11.0 Jan 2016. Next biopsy August. At my last visit my urologist thought 1.5 years instead of every year would be alright.

I'll definitely get treatment if the Gleason goes up.

Reading 'The Decision' by Dr. John McHugh has convinced me that robotic surgery would be the best for me if I decide to get treatment. He states that any irritative voiding symptoms will get worse after any radiation therapy and I definitely want to avoid that.

UPDATED

August 2016

Current treatment is active surveillance. I could not find it on the site's list of treatment options. [It's under the "Non-Invasive" category.]

My last PSA was 10.8. Just had a biopsy. 1 core out of 12 with less than 5% gleason 6. My urologist is no longer urging me to "do something", at least until the next biopsy...... Will continue to check PSA for a large jump.

I started taking turkey tail extract about 2 months ago 2000mg day. They're starting clinical trials on this after finding 100% cure rate for prostate cancer in mice. I seriously doubt that oral delivery is was the method used in the mice, but I couldn't resist taking it...... The only downside to getting a good biopsy is I'll have to keep taking the stuff

Good luck to all the watchful waiters.

Robert's e-mail address is: relliott675@gmail.com


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