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Carey Mulwee and Jo live in Missouri, USA. He was 60 when he was diagnosed in August, 2011. His initial PSA was 4.03 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Brachytherapy (High Dosage). Here is his story.

In July 2011, as part of my annual physical, I found out that my PSA was 4.03. The prior year it had been 2.8. Initially I wasn't concerned, as I had just gotten remarried in June 2011, and I knew increased sexual activity could temporarily raise your PSA. Also, I had a history of BPH issues, and had PSA scores of over 6.0 10 years ago (but after having a TURP in March 2001 my PSA scores dropped to between 1.6 - 2.8 for the next 10 years). My urologist explained the importance of velocity, and ordered another PSA test. In August 2011 I found out my PSA had risen to 4.5, and my Free PSA was 1.3, so he ordered a prostate biopsy.

On August 30, 2011, I had my biopsy at St. John's Mercy Hospital in St. Louis, MO. Cancer was present in 3 of the 12 cores and I had a Gleason score of 6 (3+3). As part of his usual procedure, my urologist ordered a Bone Scan and a CT Scan, and my wife and I scheduled a follow-up conference with him to discuss my case and different treatment options. My urologist confirmed my cancer diagnosis but gave me encouraging feedback as my Bone Scan and CT Scan were negative, and my cancer was still confined to the prostate. As a surgeon he gave us a detailed presentation of an open RP, but I got the distinct impression, as did my wife, that he was trying to guide me towards a radiation treatment option. I'm not sure why, and I haven't gone back to ask him, but I'm guessing that my desire to pursue a treatment that would have the best odds of keeping sexual function intact was the reason.

We scheduled a consultation with a radiation oncologist at Mercy Hospital. The radiation treatment options at Mercy are low-dose brachytherapy and external beam. When the oncologist did a digital exam, he found out I still had an enlarged prostate, so we scheduled an ultrasound volume study. It was determined that my prostate volume was approximately 75cc, and with my prior TURP, the oncologist recommended that I not consider low-dose brachytherapy, but consider external beam.

Conceptually I wasn't comfortable with external beam treatment. I had been doing a lot of Internet research, and learned about HDR brachytherapy. After reading a lot of material I decided that it would be the treatment option I would pursue, as the cancer cure numbers were favorable and the ED and urinary side-effects seemed less. I got plugged into the radiation oncology staff at UCLA, and started to discuss their treatment plan.

One of the initial concerns they had was the size of my prostate. Since I live in St. Louis and would have to travel to Los Angeles for treatment, they didn't want me to show up for treatment only to find a problem with the size or position of my prostate. So they ordered a MRI, which re-confirmed that the cancer was still contained in the prostate. The MRI suggested that my prostate size was quite a bit smaller than 75cc, which gave the staff at UCLA the assurance they needed to go ahead and start the scheduling process for treatment. However, they did suggest I start taking Avodart, which I started in early November 2011. So far, no serious side effects from the Avodart, except that my orgasms seem to be a bit muted.

At this time (Thanksgiving Day 2011) I am awaiting final scheduling at UCLA. We are targeting the treatment for the weeks of December 5, 2011 and December 12, 2011. I will report back once the treatment is completed.

One final thought. As part of my Internet research I came upon many good sites for information. Through my continued searching I have found more research that points to better outcomes with RP than I had originally thought was possible. I would still like to have a very detailed discussion with someone about the trade-offs between RP & HDR, for my particular situation and expectations, but if that doesn't happen I'm comfortable at this point in time that HDR will give me an acceptable outcome.

UPDATED

December 2011

As planned I went to UCLA for HDR Monotherapy treatment. The treatment protocol at UCLA involves 2 separate 2-day hospital stays, separated by about a week of time in between. I arrived in Los Angeles on Saturday, December 3, 2011. After a day of bowel prep on December 4, I had 18 temporary flexiguides implanted the morning of December 5, 2011, and had my first 20-minute radiation treatment that afternoon. After spending the night in the hospital I had 2 additional 20-minute radiation treatments on December 6, 2011, and then was released later that afternoon. On December 13, 2011, I repeated the same 2-day procedure. On Saturday December 17, 2011, my wife Jo and I flew back to our home in Chesterfield, Missouri (a suburb of St. Louis).

Things went pretty much according to plan, although the acute side effects were a bit worse than I had expected after the first 2-day treatment. I think the biggest problem I had was having an allergic reaction to the pain medication I was taking while in the hospital. I broke out in a rash and was itching badly. After being release on December 6 I decided on my own to start taking Benadryl. Unfortunately Benadryl seemed to exasperate my urinary problems (I had very urgent frequency!!) for a couple of days, but after speaking to the hospital staff I stopped the Benedryl, and started on Flomax 2-a-day, and things settled down quickly.

At this point I am a few days shy of being 2-weeks removed from treatment. Things are progressing nicely. I still haven't tried to have intercourse, as my doctor said I should let things heal for 10 days to 2 weeks first, but I am planning to bring in the New Year with a bang! I don't anticipate any ED problems, as I've already had several erections without experiencing any problems. As a side note I had excellent erections prior to treatment.

I also haven't gotten back to my full weights & cardio workout, but I don't anticipate any problems there either. The next big step for me will be to have my PSA re-checked around March 15, 2012. I do want to put in a plug for the Radiation Oncology team at UCLA. If you are considering HDR brachytherapy I would strongly encourage you to consider them for your treatment. Both my wife Jo and I were thorougly pleased with our experience. They entire staff is excellent, the facility is world-class, and it's tough to find a better place to spend 2 weeks than Los Angeles!

Please feel free to contact me directly if you have any questions about HDR brachytherapy or the treatment program at UCLA.

UPDATED

May 2012

I just got the results from my second PSA test since completing my HDR Brachytherapy. My test results effective 5/21/2012 was .75. This was a slight elevation from my test results effective 2/20/2012 of .60, but the doctor's office said not to worry about it. Since I live in the St. Louis, Missouri area I am now having all of my follow-up treatment handled by Dr. Jeff Michalski of the Siteman Cancer Center.

I am very pleased with the overall state of my recovery from my radiation treatment, now five and a half months removed. I am having no urinary or bowel problems. I do have some slight ED issues, in that my erections, while firm enough for intercourse, are definitely not up to my standard. I have tried both daily Cialis 5mg and the on-demand Cialis protocol, both of which were helpful but even with the Cialis my erections were not up pre-treatment firmness and control. I decided to get off of the Cialis; monitor if my erections keep improving; then decide on a definitive course of action if I'm not where I want to be in another 3-6 months.

UPDATED

October 2012

I had my quarterly PSA test done on August 17, 2012. My PSA had dropped to .52 (from .75), and my plasma testosterone had dropped to 271 (from 335). I'm happy with these numbers. I did encounter a bit of a problem, starting in early August, when I began to pass blood in my urine. Sometimes it was mostly urine with a slight amount of blood. Other times it was mostly blood. I was also passing what I thought were blood clots at the same time. My radiation ocologist suggested I see a urologist, to rule out anything serious. I had a CT Urogaphy and a Cystography test. The urologist said I was sloughing off necrotic tissue from the area where I had a TURP about 10 years ago. He suggested the necrotic tissue was probably a result of the HDR Brachytherapy treatment, but it could have been there prior to my treatment. As this was my first visit this urologist, he didn't have access to any of my older test or records. In any case he didn't seem too concerned about it. And after about a month the bleeding stopped on its own.

I also want to report that I am pretty much ED-free. I have not yet totally returned to my pre-treatment level of sexual performance, but at this point I am very happy with where I am, and if this is as good as it gets (and of course I'm hoping for even more improvement) both my wife and I will be very satisfied.

UPDATED

March 2013

Just had my quarterly PSA and Plasma Testosterone test on 2/20/2013. PSA was .51 and testosterone was 326. My PSA the prior 2 quarters was .52. I was hoping for a bigger drop, as I am now 15 months removed from treatment. But my doctor wasn't concerned. He said as long as the score was consistent, and not rising, that was acceptable.

Everything else is fine. Sexual function is pretty much back to normal. Erections are consistently 95+% of where I was prior to treatment. The only thing I have noticed is that, without some manual confirmation, I can't intuitively judge how firm my erection is during foreplay. This seems weird to me, as I could always "tell" if I was ready. But it's not a problem, just something I've had to get used to.

I look forward to another good report next quarter!

UPDATED

May 2013

Just had my quarterly PSA test. I am now 17 months removed from my radiation treatment. My PSA was .38. Everything else is going fine as well.

UPDATED

October 2013

My PSA as of 8/20/13 was .44, a slight rise from the previous quarterly result of .38. My doctor said this was nothing to worry about. No other changes since last update.

UPDATED

April 2014

This updates covers my last 2 quarterly PSA test. I have good news and bad news.

The good news - my PSA on 11/20/2013 was .45 and my PSA on 2/20/2014 was .34, which is the lowest PSA I have had since my initial treatment in December, 2011.

The bad news - I am starting to have ED problems. About a year ago my erections were doing very well. At that time I felt like I was about 95+% of my pretreatment erections. Since that time, and really beginning in the Fall of 2013, I started to notice a degradation in my firmness and rigidity. There is a specific area starting at the base of my penis (where it attaches to the body) and extending out about an inch from my body, where I feel very hard, somewhat lumpy tissue under the skin of my penis. This tissue is on both sides of my penis but more predominant on the left side. When I get an erection this segment of my penis does not get rigid, which makes intercourse a process to be "managed" more so than enjoyed. I went to see my Urologist who said this hard tissue was plaque/scar tissue that was most likely a resulting outcome of my radiation treatment. I don't know that he gave me an official diagnosis of Peyronie's Disease, but he did mention that several times in our discussion. At this time I am going to experiment with Cialis and Viagra to see what effect these meds will have on my overall erections and this area of my penis specifically.

UPDATED

June 2014

Had my quarterly PSA on 5/22/2014 and scored .38. This is up a bit from last quarter (@ .34) but am thinking this is not an issue.

Still dealing with the effects of the Peyronie's Disease. I have been experimenting with different dosages of both Cialis & Viagra. They are having the expected result of improving my general erection, but neither is having any effect on making the area affected by the Peyronie's to become more rigid or erect. That's a bit of a bummer. Will keep experimenting. The good news is that my wife has been a willing "lab partner"!

UPDATED

August 2014

Just had my quarterly PSA test. My score of .24 was my lowest since my December, 2011 initial treatment.

I am still dealing with Peyronie's Disease. My Radiation Oncologist suggested we try a 6-8 month treatment using Pentoxifylline 400 MG/3-per-day. My Urologist wasn't as high on it, but agreed to prescribe it. I've been on it for 2 months now. Can't say I've seen any real improvement yet. But I have figured out how to "manage" my way around the implications of the Peyronie's related to intercourse, so all is good!

UPDATED

November 2014

My PSA score was .20 at my quarterly test on 11/20/2014. I am very happy with my score. However, my Peyronie's Disease is still a problem. I am completing an initial 6-month prescription of Pentoxifylline, which was recommended by my Radiation Oncologist. It has been helpful, but not sure if I will continue taking it. Am also taking 400IU of Vitamin E. The Peyronie's has manifested itself with a significant lose of length in my erections (at least 3 inches) and my erections looked like a crooked stick! However, I am at least able to achieve a useable erection a very high percentage of the time.

UPDATED

May 2015

Since last reporting I have had 2 quarterly PSA tests, one on 2/20/15 and the second one on 5/20/15. For both test my PSA was .16. I am having no problems except the same issues I've previously reported having with Peyronie's Disease. I will have completed a one-year cycle of taking Pentoxifylline next month. I don't intend to continue taking it, as I think it has served its purpose. At this point I believe the Peyronie's is as good as it is going to get.

UPDATED

August 2015

Quarterly PSA score was .11 on 8/20/2015. No new issues to report.

UPDATED

September 2016

Things have been pretty consistent since my last report. PSA level has been at or below .20 for going on two years. No change in the Peyronies but no ED problems either. All is good!

Carey's e-mail address is: careymulwee AT yahoo.com (replace "AT" with "@")


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