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Martin W and Cathy live in Florida, USA. He was 65 when he was diagnosed in October, 2010. His initial PSA was 2.50 ng/ml, his Gleason Score was 7a, and he was staged T1c. His choice of treatment was External Beam Radiation (Proton Beam). Here is his story.

I met with my primary care physician (PCP) on September 9, 2010 to review the results of my annual physical exam. I should first state that I am a very healthy 65 years old with no history of any medical problems. I have never been to a hospital except to visit someone! All of my previous exams have always been the same. The doc always ended the meetings with "great shape. ..keep it up whatever you are doing". This time, however, he explained that my triglycerides were high and he wanted to prescribe something for it. I wasn't too happy about taking pills and was launching into my speech about exercising more and cutting back on eating at Hooters. Before I could get into all of that, he also mentioned that my PSA had spiked from 1.2 to 3.9. I had no clue whether that was good or bad but asked about the use of the word "spiked: He performed a DRE (Digital Rectal Examination) and found nothing. He gave me the option to wait six months and retest or to schedule an appointment with an urologist. I opted for the six month…after all I was healthy and have never had a problem. Well my decision might have been my plan but after I got home, I found that it wasn't my wife's plan.

I met with the urologist on September 13 where he drew blood and did a DRE. He felt "something" and suggested a biopsy regardless of the PSA count. The biopsy was performed on October 4th with 12 core samples. The results came back on October 11th. The results involved 3 on right, 1 on left and was graded as 7a (3+4) T1c. All I heard was the word "cancer". (PSA was 2.5 down from the 3.9)

My wife and I met with the Urologist on October 25 where he explained my options. He did not recommend any specific therapy but said he was a surgeon but if I opted for radiation, his business partner was a Radiologist. I left telling him I would get back to him.

On October 15, I had both a full body bone scan and a Lumbar MRI to determine if the cancer has metastasized. It was determined that it was local to the prostate. Additionally, I had another MRI on November 2 specific to the Pelvic area as the urologist prescribed lumbar by accident. Results showed no spreading of the cancer.

On November 11 I met with a surgeon and a radiologist at Moffitt Cancer Center in Tampa Florida for a second opinion on the biopsy slides and to look at the facility. Both explained what they could offer and recommended we get started immediately. I told them I would get back with them.

During all of this, I spent many hours researching the various therapies. I read a number of books on the subject. Among them were:

(a) The ABC's of Prostate Cancer;
(b) Dr Walsh's Guide to Surviving Prostate Cancer and
(c) a book by Robert Marckini entitled "You Can Beat Prostate Cancer".

Additionally, I started calling men that had gone through this with the various methods. I had friends that had surgery, cryosurgery, HIFU , EBRT and brachytherapy. Most all were cancer free but many had various side affects. The exception was the Proton therapy patients. I decided to look into that option a little more closely.

I found that there was a proton treatment center in Jacksonville Florida, about 200 miles from my home. I contacted the University of Florida Proton Institute on November 12th and was scheduled for a preliminary consultation on November 23rd. I was informed that I would, if they decided I was a candidate for the treatment; need a colonoscopy if it had been three years or more since the last one. Of course, it was five years so the next step was to get a colonoscopy which was scheduled for December 7, 2010.

I arrived at the UFFPI on November 23rd. I met numerous nurses, doctors and staff that would be involved in my therapy should they admit me. The accounting personnel verified that my insurance company would cover all expenses with the exception of my co-pay ($1,500). I had a cat scan with contrast and an MRI. A PSA test was done and showed a level of 2.5 with free PSA of 20%. All in all, things were looking up. I was impressed with the people, the facility and the patients I met in the lobby. I talked with many men while I was waiting for my various appointments. When the day was done, I drove the four hours back to Tampa feeling a little better about this entire escapade.

At this point, I was spending a lot of time on the Internet and researching all this. I finally came to the conclusion that Proton Therapy was the right decision. I called the UFPTI. They told me that I was a candidate and scheduled me for the three day work-up on December 15.

The colonoscopy was performed on December 7 and there was good news --- everything was fine. At least there was one less thing to worry about.

I arrived in Jacksonville on the December 14. I had a chest x-ray, another MRI and CAT scan, (non-diagnostic), another DRE and four gold coil markers inserted into the prostate. A mold was made that I would lie in when the treatment actually started. Additionally, marks were made on each side on my hips. This would ensure I was lying in the mold at the exact same place every time. The gold markers would also ensure the position of the prostate when administering the protons. Once the simulation was complete, I was given a date to report to the Institute. That date was January 20, 2011. There would be 39 treatments spread over 8 weeks. The past few days confirmed my decision that I was making the right call on this.

I will arrive in Jacksonville and set up my new apartment on the January 19, 2011. My plan is to drive home on the week-ends and help my wife take care of the homestead. I also plan to work during this time since I am a full time sales rep.

January 20, 2011 - March 16th, 2011

Completed 39 proton treatments. The treatment went very well. The staff at UFPI was great, extremely helpful and professional. The daily routine consisted of drinking 24 ounces of water; waiting 45 minutes for it to fill reach the bladder. I would then be called to get into my custom-made "pod". A rectal balloon was inserted and filled with saline. The purpose of the full bladder and balloon was to hold the prostate in position and to also move surrounding organs (rectum, bladder, etc) out of harms way. The treatment itself took 5 minutes or less.

There were mandatory meetings with the doctor and a nurse each week to discuss any questions I might have or any side effects. The only issue I had started at week five. I had a constant urge to urinate which was remedied by taking two Aleves and a Flomax I managed to get the early morning schedule which left time to work, as I planned, and to golf with my many new friends.

April 13, 2011

It has been one month since I finished my 39th proton treatment. My exit PSA was higher than when I started treatment! It was 4.5. Obviously, I was not too thrilled with that news but now understand that it is normal since the prostate is extremely agitated by the treatment.

I do not feel any side effects that are noteworthy. Everything seems to be working so far. I do not have any rectal, urinary or ED issues, however, I am still on the Aleve and the Flomax. I will begin the weaning process today by eliminating the Aleve (one at a time) and the Flomax two weeks later. I will have PSA tests at the three month and at six months anniversary. The results will be an indication as to how well this worked.

May 4, 2011

I have continued to exercise 30 minutes per day, five days per week. I follow that up with a jog/walk for two miles. I have stopped taking the Aleve and am taking the Flomax every other day until the 16th. Everything is still fine. My PSA test is scheduled for June 17th. I will update with the results.

UPDATED

July 2011

It has been close to four months since my Proton treatment was completed. My exit PSA was 4.5 and this one showed a drop to 2.4. Pre-treatment was 2.5 (original finding was 3.9) so this is a positive turn in the right direction!

The only issue I had was a UTI at the 90 day mark which prevented me from doing the PSA as scheduled. Not really sure what caused it but it was cleared up with 10 days of Cipro.

I am scheduled for the next test in September coupled with a visit with the Doctors at UFPTI. I will forward an update after that meeting.

Bottom line: all is well.

UPDATED

April 2012

It has been 13 months since I finished my last Proton treatment. In the past year my PSA bounced up and down with every 3 month check-up. My 6 month PSA was 3.5 and the 9 month jumped to 5.4. It was thought that I might still have a lingering infection from the UTI. A 30 day script for Cipro brought the PSA to 3.2. All of this was pretty nerve racking as I thought the PSA should always be going down. Turns out that wasn't the case. It can actually bounce for two years or more. Obviously if it goes through the roof, something is probably wrong.

Anyway, 13 months later, I am doing well and have no real complaints. I do have bouts of slow urination only in the mornings and also if I happen to get up in the middle of the night. All other systems are working fine and on some occasions a little help (Cialis) relieves the performance anxieties! I am not sure if that is related to the treatment or if I am a mental case after all of this.

I am still a strong believer in Proton therapy. Each person will decide what is right for them but I would suggest that you consider all of the options prior to making the final call. Good health to all of you.

Mart

UPDATED

April 2013

Well, it has been some time since my last update. It has been an interesting two years since I completed proton therapy in March of 2011.

All is well and I feel great with only one complaint. My PSA readings are still bouncing all over the chart. It has been checked every three months since March of 2011. The norm is that it will go down and may have a few spikes here and there but the desired result is to get to 1.0 and lower. Well, mine has been on a roller coaster ride since the beginning. I have taken Cipro three different times. The thought was there might be a lingering infection. Testing after the Cipro regimen always showed a lower number. However the next test would show it higher, the next one lower without Cipro! A good example is that the last test showed 5.99. The doctor had me do another, one week later, and it was 4.1….a drop of almost 2 points in a week. There was no rhyme or reason. The doctors keep telling me not to worry about it unless it doubles or goes off the chart.

My two year check-up was April 15, 2013. I had an MRI, with contrast, a PET scan with contrast and a DRE. The good news, actually great news, was that there were zero traces of cancer anywhere in my body and the prostate felt as it should (albeit a bit smaller than when we started). Again, the doctor could not say why my PSA levels fluctuate so much. He wants to continue the three month test and is convinced that this will level out and the PSA will start dropping.

Aside from how nerve racking this is, I am not having any negative issues or side effects from the proton therapy. Everything is working as it should and I have no real complaints at this time. Most of the men I met at the UFPTI and keep in touch with are telling me the same story except their PSA levels are down in the 1-2 range. I still believe Proton therapy is as good as the others but with much less side effects and a better quality of life.

I will keep updating this as new developments arise. I know there must be others with a "bouncing" PSA so I hope this helps or if someone finds out what causes this, please contact me.

Good health to all of us.

UPDATED

March 2014

My last report was one year ago. At that time I reported my PSA at 4.1 in March of 2013. The very next test in July showed a jump to 6.4! I had changed testing centers (due to insurance). As a result of that reading, I was given a script for Doxycycline (was getting Cipro) and this time it came back at 2.5. Another test in December showed a slight rise to 2.8. I am now at the 3 year mark and the March PSA is currently at 2.1. At least it is now heading in the right direction.

The doctors are perplexed as to why I am having this issue. They have assured me that I am cancer free based on the PetScan and MRI taken in late April of 2013.

For the most part there is nothing that is really bothering me at this point. My libido is not as great as I would like but it could be my age (69) sneaking up on me. If not for the stress of erratic PSA numbers, I am doing great.

I am trying to take one day at a time and not to stress over the little things in life. I do not think any of us that has gone down this road comes away completely unscathed. I think we all have little mementos that remind us what we have been through.

Life is good and I am enjoying every day.

Best of health to all of us!

UPDATED

September 2014

It has now been 42 months since my proton therapy was completed in March of 2011. It has been, if you have browsed through this narrative, a real roller coaster ride with my PSA numbers. They have been up and down with the highest at 6.4. I am pleased to report (actually ecstatic!) that the latest reading is now at 1.9. Not a big drop from the 2.1 six months ago but for me, it is a great relief. I am not sure how important or accurate PSA numbers are but like everyone else on this site, we are most happy when that number is way low!

I am still a firm believer that proton therapy works as well as any of the other options. The difference is in the side effects and quality of life after the treatment. I have no issues other than the bouncy PSA numbers and what it does to my state of mind! Hopefully, the number will continue its current downward trend. The next test is in six months. As a side note, if any of you are having an erratic PSA number and are taking Ciprofloxacin because your doctor thinks you may have "a lingering infection (prostatitis)", consider requesting him to prescribe Doxycyclinethe next time around. It made the difference for me.

I wish good health to all.

UPDATED

April 2015

I do not have a lot to report this time. It has been six months since my last PSA test which was 1.9. This time around the result came back slightly higher at 2.0. It has been four years since completing treatment at the University of Florida Proton Institute and the PSA still has not reached a nadir unless this is it. I am not sure if it is even important at this point. I feel great and am healthy with the exception of slightly high blood pressure which is under control with Amlodipine. While I would like to see the number below the 1.0, I am pleased that it is no longer on the roller coaster ride it once was. The doctors are not concerned and suggest we keep on eye on it and see what it does in the next 6 months. So be it.

If anything, I hope those of you that are concerned with bouncy PSA numbers will read back through this post and see how erratic the numbers can be. Don't drive yourself crazy worrying about it unless it continues the upward trend every test. A lot has been written about PSA numbers and how they can differ from day to day (read Terry's 28 day experiment).

Overall, life is good and I am thankful for every day knowing that I am better off than many other people out there.

Good health and happiness to all of us.

UPDATED

May 2016

It has been over a year since I last updated my story and it has now been five years since I completed treatment at the University of Florida Proton Institute (UFPTI). The latest news is that my PSA has finally stabilized at a somewhat low number for me (1.2). If you have read this post, you will see that my PSA readings were bouncing all over the place. I was very concerned that proton radiation did not work. I have come to the conclusion that the PSA nadir is different for every man and that a bouncy PSA number is somewhat normal for at least the first two or three years after treatment. I also believe that the gold markers that are placed in the prostate to pinpoint the exact spot to radiate is part of the reason the PSA levels are erratic---- low then high then low, etc. My layman's self-diagnosis is that the markers are being rejected by the body since it is a foreign object and, as such, causes a slight infection which in turn skews the PSA numbers. That is my rationalization!

In any case, all is well and I have no complaints or side effects from the treatment. I am a firm proponent of proton therapy and suggest that it should be considered by every man that is diagnosed with PCa.

Good health and happiness to all.

Martin's e-mail address is: martwa@tampabay.rr.com


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