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Jerry Sullivan and Karen live in Florida, USA. He was 68 when he was diagnosed in August, 2007. His initial PSA was 5.20 ng/ml, his Gleason Score was 6, and he was staged T1c. His initial treatment choice was Brachytherapy (Seed Implant with External Beam) and his current treatment choice is None. Here is his story.

The biopsy was done in mid July, 2007, after my doctor had observed that, while Cipro lowered my PSA (I had once had a session of Prostatitis), it did not lower it enough. He suggested waiting 3 more months, but I suggested "lets get it done".

I don't recall if they ever said what the stage was, but there were three areas found, all in the front of the prostate, where a DRE (Digital Rectal Examination) would not have detected it at all, or at least until way too late. Two locations were high in the upper lobes, next to the bladder.

Subsequent MRI and PET scans showed that it was contained, so seeds were inserted (76) the first Monday in October, and IMRT (Intensity Modulated Radiation Therapy) of 25 treatments, 5 days a week except for Christmas was started the first of December, 2007 and completed in mid-January, 2008.

The PSA rapidly fell to 0.9 by late February and to 0.7 by July of 2008, but the more recent PSA in January 2009 shows 1.1, which has me worried. In March of 2008, I scheduled an appointment with my Oncologist for Jan. 21, 09 and so we will see what, if anything needs to be done. Yes, I am worried. I'll be 70 in a week, and would like to hang around quite a while longer.

After initial discomfort on urination, and mild bowel problems, I seem to have returned pretty much to normal, whatever that is.

UPDATED

March 2009

I saw my oncologist in late January, and he believes that I am experiencing a bump or as he prefers to call it, a "Prostate Flare" [Jerry's PSA is 1.1 ng/ml]. His colleagues advise their patients to expect this, but he said that he does not because in his experience, better results were obtained when there was a flare, so he would rather not scare his patients that do not have one. In any case, I was told to expect a higher reading of PSA in July, and not to be concerned unless one in Jan. 2010 were still higher.

Currently I am experiencing a little burning on urination and my GP put me on 7 days of Cypro since there was evidence of a mild infection in the urine. Meanwhile, one of my friends who had the same treatment prior to me, by a year, by the same doctor, told me that his PSA has trended lower, but is definitely not linear. He also advised that:

Before Diagnosis-- PSA = Prostate Specific Antigen
After Diagnosis -- PSA = Prostate Specific Anxiety

UPDATED

August 2009

After concern over a high reading of 1.10 this past January, I was naturally somewhat anxious about the one taken this past Wednesday. However, the PSA came back at 0.30, good news, especially since my doctor considers anything less than 0.20 to be quite rare.

UPDATED

July 2010

I believe the last time I posted my PSA was 1.1 after it had fallen to 0.7 six months previously. Radiation was completed in January 2008, and by August 2008, my PSA stood at 0.7. Then in January 2009, it was 1.1, but my oncologist assured me that he expected this and considered it a good sign.

By August of 2009, it had fallen to 0.3, and by January of this year to 0.7. Then last week it again stood at 0.7, and as I had a scheduled appointment with my urologist (who works with my oncologist and has for 20+ years) I expressed my concern. He was a little concerned also, but reminded me that I had not yet reached a baseline, which could take 5 years, and the general guideline is to not start salvage therapy unless there is a increase in two readings above the baseline.

Also complicating this was a possible urinary infection last week which seemed to clear itself as there was no evidence today. Result, another PSA reading in 3 months and 6 months and at 6 months I will see the oncologist unless the 3 month one is of concern.

UPDATED

November 2011

I have had two successive PSA readings of 0.1, this past January and this past July. According to my oncologist and my plumber, they consider me "cured" as they tell me that they have never had a recurrence after PSA readings below 0.2. The oncologist said I might get some ripples, but that the doctors do not get excited unless the PSA exceeds 1.0.

You can google, Dr. Douglas Swartz on the internet. He presented a paper on this subject about 18 months ago in San Francisco in which he showed a recurrence rate of under .1% using the combination of seeds and external radiation that I had. However, remember that when the oncologist says that you are "cured", what it really means is that he expects that you will live long enough to die of something else.

UPDATED

December 2012

My PSA continued to drop and by mid-2011 it had settled at 0.2. Then the first PSA taken in 2012 was 0.1 which my Dr. considers the lowest level that can be reliably detected. The PSA remained at 0.1, but my serum testosterone was found to be lower than desirable and the Dr. prescribed a supplement. Since such a supplement can increase the PSA, I was concerned, but then my report from two weeks ago was "less than 0.1". This is considered undetectable by my doctors, who tell me that if the PSA cannot be reliably measured, the report will just say "less than 0.1". For the record, my treatment in the period 10/07-1/08 was 76 palladium seeds inserted by the precision method using ultrasound to visualize placement, followed up by 25 external beam radiation treatments. The only noticeable after-effect is a somewhat more irritable bowel than I had before, but when I had a colonoscopy in 2010, the Dr. said the irritation was a lot less than many. My Drs. tell me that they have never had a patient to reoccur after a PSA of 0.2 or less, and so I shall hope that I am not an exception.

UPDATED

March 2013

After a PSA reading of 0.1 last June, and noting that my testosterone was low, my Dr. prescribed a testosterone supplement. He told me he had over 200 patients like me and that none had experienced any problems related to the Prostate Ca account of it. He also warned that his partner, the oncologist would disagree on this. After 6 months of testosterone supplement, the PSA was again taken in December, 2012 and the report came back "less than 0.1" which my Urologist claims means it could not be read, i.e. undetectable. I have continued the supplement and will have another PSA in June or July but the urologist said he does not need to see me again until next January unless the PSA shows something or I have concerns.

Side effects of all this treatment since 10/07 have been minimal. I do feel a need to have a bowel movement when in fact I don't, and I sometimes have a bifurcated urine stream. The urine stream also starts and stops. I was told by another patient to expect this and if brachytherapy plus EMRT bought me several more years on this planet it was worth it.

UPDATED

June 2014

For over two years, the PSA has stood at "less than .1" and my doctors tell me that .1 is the lowest reliable value that can be measured. Both of my doctors consider me to be cured and ultrasounds by the urologist show that the prostate is essentially "gone", while the magic finger by the oncologist reveals that it is "flat". I believe that for a guy over 60 (I was 68 when the cancer was found), brachytherapy (i.e. seeds) with follow up radiation was a great choice and two friends have had success similar to mine since. Another friend, at age 53, recently had his surgically removed but recovery from that was over a month, while I was back at work 3 days after seed implant

UPDATED

July 2015

I see my oncologist once a year in January. My original one retired last year, so I will see a different one in 2016 (although retired, my original one was "filling in" in January of this year). I will see the urologist later this month. PSA is now reported as "less than 0.1 ng/ml which the Dr. tells me, means the lab could not read it. Good, like golf, lower the better.

The only side-effect, long term, is an irritated bowel from the follow up radiation. I have had two colonoscopies since the treatment for prostate cancer and in both instances, the physician described this as "mild". Literally what it means is that it feels like you need to do a BM whether you do or not, but I can live with that. It is now 7 years since radiation treatments were completed in 1/2008 and both of my doctors tell me that they have never seen a recurrence when the PSA got less than 0.2 so we will hope I am not an exception. The colonoscopies are not related to the prostate Ca, but rather to a family history of colon cancer, and as I have had two small polyps, I get one every three years. Next one is due in Spring, 2017

UPDATED

August 2016

The original treatment in 2007 was 76 seeds (brachytherapy) followed by 25 external beam radiation treatments. For some years now, the PSA has been <0.1 which my Dr. says means it is zero, unreadable. I highly recommend this treatment as the long term side effects are almost nothing and at least two of my friends have opted for surgical removal of the prostate and had rising PSA reading in no more than 2-3 years, one being my dentist of 28 years. This past January, the oncologist told me that they did not need to see me anymore unless I just wanted to be "sociable" but it is hard to be just "sociable" at the rate they charge. I get a PSA twice a year and now that the oncologist is done, I will see my urologist twice a year.

UPDATED

September 2017

Most recent PSA, two weeks ago, was ZERO. Actual report was "less than 0.1" and my urologist advised that that meant it was undetectable. I had seed implants (76) and 25 follow up external beam radiation treatments. Not only has it worked for me, but the identical process has worked for 2 of my good friends. At the same time my dentist had surgical removal, and within less than a year he had to have salvage therapy, so based on that I would take the seed implants/external radiation over surgery any time.

UPDATED

October 2018

I have not had a physical yet this year, so I only know what my PSA was last year.

Could the administrator send me another reminder toward the end of the year. Under current regulations, I should have another physical by then, and I will ask for a PSA test.

UPDATED

January 2019

PSA was tested in October, 2018 and like the last several years it was undetectable. The only side effects I ever had were spasms in urination and some irritation of the lower bowel. These have diminished with time. Treatment was completed in January 2008, so I am coming up on 11 years post procedure.

UPDATED

February 2020

The PSA continues to be unreadible, and has been since about 4 or 5 years after the insertion of seeds and external beam radiation. The only issues are that urination tends to be in "spasms" which I was told would be the case by some other guys, who were further along, while I was waiting to have my PET scan. The evacuation issue is just that often it feels necessary when it isn't.

UPDATED

July 2022

My seed procedure was done in October of 2007, with followup radiation that ended in Jan. 2008.

Eventually, my PSA fell to less than 0.1 where it still stands almost 15 years after the start of procedures. My doctor says that this PSA reading means your PSA is essentially unreadable. Even so there is some anxiety every year when it is tested as part of my Medicare physical. I tell friends that now PSA stands for Prostate Specific Anxiety.

UPDATED

August 2023

I have my PSA tested annually as part of my Medicare physical and it continues to be zero. In the last few months I have noticed specks in my urine and I leak some so I use pads. These specks are tiny blood clots because I rubbed one on the pad and it left a pink strip. I saw my original urologist and a ultrasound did not show anything so in 2 weeks I have an appointment for a CT scan and use of a visual device up the plumbing. I am a little concerned since my father had small bladder cancers at around age 90. These were removed and did not further affect his health. I am now 84, so?

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


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