THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
I have been following this site for the better part of 18 months now after my initial diagnosis in October 2008. After battling with a variety of strange little illnesses and not feeling 100% and after extensive blood work the issues I was battling had actually nothing to do with the result of eventually being diagnosed with Prostate Cancer. My Low thyroid was not related to the balance of this story. At the time 45 years old slightly overweight but no other major issues.
From May 2008 till September 3 PSA tests were completed each with Elevated PSA of 4.6 - 6.7 - 5.4 After the 3rd I was referred to a Local Urologist by my primary care physician who did a DRE (Digital Rectal Examination) (negative) and another PSA which came back 5.6 at which time he recommended the Biopsy for the following week. Ultra Sound showed no visible issues size 27 CC's normal - and 1 of 12 samples came back 25% 2.5 MM in size TC1 staging. Note to all Doctor stated that no local anaesthetic or numbing agent was necessary for the Biopsy. I wish I can take that needle and stick it up his butt 12 times and see if he recommends that in the future; man was that a horrible experience.
Needless to say nobody is prepared for that consultation when you find out that you are indeed positive for Prostate Cancer. I actually was in my primary cares office for something else when he received the test results and broke the news to me and he was honest that he had no knowledge of treatments or what was best and of course referred me back to the urologist which my appointment was about a week later. Immediately I began researching everything I could get my hands on and was overwhelmed by not only the mass amounts of data but treatment options, or lack thereof when choosing active surveillance. It was a blur and to be honest I felt like I was in a time warp.
As my blood pressure returned to normal and my thinking became more clear, I also realized that no matter what anyone said a rush to judgment or treatment was not in my best interest. Even so my initial consultation with my urologist so he could break the news to me (even though I already knew) was not what you expect. He immediately began discussion for a perineal radical prostatectomy stating this is how he does it with less likelihood of causing ED - Incontinence issues and with my age watchful waiting was not an option. Of course even with ED issues loss of physical ejaculation of semen would be permanent etc. These were not the things I wanted to hear. I told him I would get back to him.
I began meeting with every type of Surgeon - and treatment center known First with Da Vinci Specialists, then CyberKnife®, then with laparoscopic surgeons, then with oncologist, and you know what I found out, if you go to a specialist they will recommend what they do and not give you any options. Nobody and I mean nobody gave me an option other than their specialty. I did have a couple tell me taking 6 months to a year to make a decision would not affect in all likelihood my outcome.
So that is what I did, I took the last year and became an expert on every procedure and option out there. Taking PSA tests every 3 months not once it being higher than 5.2. I began to exercise regularly and my overall health and outlook became much better as well. I met in October 1 year later from my original biopsy with Doctor George Suarez foremost leader in HIFU (High Intensity Focused Ultrasound). here in Miami. Here is a very nice guy but he was like "OK lets schedule you for this weekend in the Bahamas center.'" I mean I didn't need a hard sell on taking out my prostate that is for sure, but of all the treatments even though HIFU wasn't FDA approved I liked this option best and had it in my head for 1st of the year January 2010 to move ahead with my HIFU treatment.
Over that 90 days I continued to research and came across the Proton Therapy that I sort of skipped over previously because it was a form of radiation. I became intrigued by all of the good stories from the centers and found that it's not widely recommended because there are so few treatment centers, its very expensive and insurance is hit or miss with coverage. On the flip side at my age I felt it gave me the best chance of maintaining my manly functions with defeating the cancer at the same time. Some don't think along these lines but I do. I scheduled my initial consolation Feb 1 and flew to the Florida Proton Institute in Jacksonville. Spending half a day there and having a CT scan done, meeting with the insurance /finance people, nurse & case worker as well as 1 hour consultation with the Proton Oncologist, I finally felt that the decision for me was Proton Therapy. We scheduled the Initial treatment for Monday May 3rd with my 3 day work up and simulation for 1st week of April.
My insurance is paying for all of the $151,000 of the $154,000 that they are billing (I'm sure their contract rate is much less) but $2,800.00 out of pocket for me is no problem. [Men who intend self-funding Proton Beam Therapy should consider overseas options where the cost may be much lower] The center has been helpful in questions that I have had that have come up, recommended housing and answered just about any question I might have had as I approach the beginning of my treatment and although certainly not looking forward to beginning my treatment I am very comfortable in all phases of what has been a very stressful 18 months since diagnosis.
Don't know what the eventual outcome will be but leading up to this decision was not easy. With that said wish me luck May 3 is just around the corner!
After deciding that Proton therapy would be my choice of treatment I just finished a three day work up and simulation at Florida Proton Center Jacksonville. Arrived Wed for a little tutorial followed by 3 items: a standard chest X-ray - an MRI of the Pelvis along with a full Bone Scan. These were completed previously but since I chose active surveillance and it has been 18 months since these tests were done, they wanted them completed again.
Thursday found me heading for a 12 Core repeat biopsy along with the placement of the gold markers that are used for the monitoring of the movement of the prostate during treatment. Note: Dr. Joseph Costa of UNIV of Fla medical center Jacksonville performed this procedure. Unlike my last one I was given a shot of local anesthetic in the prostate and that 30 seconds was very uncomfortable but unlike my original prostate the core samples were not felt and the markers a breeze. Anyone who gets a biopsy without lydocaine should shoot their urologist on the spot.
Friday was my simulation where they make your pod that will be your home for 39 treatments they insert a saline balloon in your rectum to separate the prostate from the bladder and create a from fitting lay down type tray. They also place your semi permanent tattoos on your hips and areas they will shoot the protons. This is followed by a 15 minute MRI with the balloon inserted while trying not to pee the entire time.
Note this was probably the most torture of the 3 days but the simulation will be pretty much what the treatment is like and it seemed to be a breeze. 1st treatment is May 3rd will keep you informed but so far so good.
Been about 7 weeks ago I updated my story so I thought I'd add what my situation is currently. Last I left off I was getting ready to begin my treatment at Univ Of Florida / Jacksonville Proton Therapy Center.
Treatment began on Monday May 3 and as of yesterday (June 6 2010) completed 24 treatments of 39 with 3 weeks to go. Although I don't know the long term results for obviously well after treatment the treatment experience itself is simply stated a NON ISSUE.
The first couple of weeks you have to get used to the bombardment of radiation to the prostate and of course the insertion of the balloon into your rectum everyday during treatment and even that has become almost routine and easily tolerable.
Side effects are mild increased urination and slower stream with a small amount of trouble voiding, but that was all eased by two Aleave a day about 1 hour after treatment and some natural 3x strength cranberry pill extracts 3 times a day.
With any medical center dealing with high tech equipment, hundreds of patients, there are your normal delays, equipment breakdowns, doctor delays etc, but I have yet to miss or have a treatment canceled and as of now all systems are go with little to no side effects.
I play golf on the days I don't work out so my energy level is better than ever. The staff and ladies of proton as I call them therapists are simply the sweetest gals in the world and everyone is about a friendly in the Jacksonville area as anywhere I've been in the country.
I'll keep you informed of final disposition of treatment and long term results of course but as of now ALL SYSTEMS ARE FUNCTIONING IF YOU GET MY MEANING :))))))))) No issues with potency, erections, ejaculations in fact if anything I'm "Strong Like Bull".
All the best to anyone out there with a difficult decision to make but as of now I couldn't be happier!
Finished my course of treatment (39) on June 25th and it was bitter sweet to be leaving the Girls of Florida Proton. What a great group of people the entire staff was simply a pleasure to deal with and upon treatment #39 I was ready for my 5 hour drive home to South Florida. The day before my last treatment we did a PSA to measure where the PSA would be at now versus the beginning of treatment. They expected it to be close to equal if not higher than when we began as the prostate should have been irritated. 3.2 was the reading lower than expected and I began my trip home.
Six weeks have now passed since my treatment ended and as they explained many of the side effects as minor as they were (Voiding, urgency, feeling of not emptying) are now 98% gone completely and actually feel better than before treatment began. Erections are about the same, ejaculation fine with a little less seminal fluid but otherwise in short "NO ISSUES"
I took a couple of weeks off to smell the roses, have little decompression down time, visit some friends and family etc. Returned to a full time work schedule two weeks ago and now alternate after work a work out, or hitting golf balls with 18-36 holes on the weekend. I don't know if it's the lift of the mental stress / strain that I carried around with 18 months of watchful waiting / AS, but I can tell you that my mental outlook has done a 180, I have a significant amount more energy, and overall feel 300% better than before treatment.
In my opinion the stress watchful waiting / AS was a heavy load to carry. Although I thought I had a clear head and nothing was bothering me, deep down it weighed heavy on my mind as I realize now my cause of so many peripheral type issues that have no since disappeared were caused by stress, and the only stress I had was carrying the burden of AS and non treatment. A word to the wise to my brothers who choose the WW/AS.
My first 3 monthly follow up PSA is at the end of September and the six month follow up at Florida Proton is in January. I fully expect nothing but positive results. I can't speak for anyone other than myself as each case is an individual decision, but not for one second do I regret my treatment choice and the staff and facility at Florida Proton Thanks guys! Will keep you updated!
Just received my first PSA test results 3 months following Treatment (Proton therapy) and the results are much more than expected. All the way down to 0.9!
Feeling great, No Side effects 3 months post treatment in fact feel better than before!
Thank You University of Florida Proton Center!!
Just wanted to give the six Month follow up to post Proton Therapy Treatment Report. I'll keep it short as there are no issues to report of any kind.
After having my blood work done locally I flew to University of Jacksonville Proton for review of records and to meet with the Radiation Urologist who oversaw my treatment.
Last PSA was 0.9 with no side effects of any kind. Ejaculation fluid is a bit more clear and is not forceful upon climax but it all works:-) NO Incontinence issues. In short all is well!
Wishing all out there the best for 2011. I'll be happy to share my treatment experiences or anyone who may have questions.
Nine months Post Treatment has my PSA test done still 1.0 - no change from six month check...
Seminal Fluid from ejaculation is less than prior to treatment but otherwise in short No Issues!!
Two Years post Proton Therapy treatment. Absolutely no issues with Incontinence or bowel problems of any kind. PSA nadir is almost reached. 1.6 my last check in January 2012 which is right about where it should be.
Some Minor ED more due to very low testosterone, blood pressure medication and some added weight. No problems if Viagra is used. Ejaculation is more than it was about a year ago. In Short Everything is where it should be and Feeling fine. So far a great treatment decision for me.
Two year post Blood work PSA NADIR 0.7 Its all good!
Hit the 3 Year Mark this Month post Proton Beam Radiation treatment up in Jacksonville and all I can say is I feel fantastic. I'll keep it short & Sweet.
A: No bladder or bowel issues of any kind nor did I have any over the past 3 years.
B: ED is minor but it more related to low testosterone and weight issues and blood pressure medication. If I could shed some lbs and live a little healthier life style I'm sure this could be eliminated it wasn't treatment related.
C: Overall health & Outlook excellent and with a current 0.5 PSA I couldn't be happier.
Bottom Line Florida Proton - was a great choice for me and feel great!
Been a year since my last update so as we are now 4 years post treatment I'd like to give a brief update on my treatment and results.
As stated PSA Steady at 0.6 Absolutely no issues whatsoever with incontinence or bowel issues of any kind.
Some E.D. but that is more due to low level of testosterone which was declining as well as some blood pressure medications and weight gain which has nothing to do with the treament itself.
In short all is well and I couldn't be happier with my treatment choice. Next step some excercise and nutritional weight loss program.
Be happy to answer any questions.
We are Now 5 years Post Treatment.. and happy to say my PSA has held at .05 to .07 over the following years that followed by Proton Treatment.
Not much has changed in overall feeling but did take some steps even in the face of confusing advice from many Doctors. My Testosterone post treatment was hovering in the high 180 to 200 range causing a variety of problems from energy levels to lack of sex drive to ED issues. Combine this with being overweight with blood pressure medications it was not all good.
After careful consideration and multiple discussions with treating Urologists it was decided that TESTOSTERONE REPLACEMENT would not cause recurrence if there was no cancer remaining so we embarked on the last 9 months of replacement treatment... 1 Shot of Testosterone per week plus 1 shot ot HCG which stimulates normal testosterone production.. and we have raised my levels to almost 700 testosterone.. NO INCREASE OF PSA over the last 9 monhts so 1 does not seem to have an effect on the other for me anyway.
Energy level's higher, sex drive higher and signifcant increase in erection...
Lower amount of Ejaculation fluid lately but no idea if this has anything to do with the Testosterone or the 5 years post treatment All and all Doing fine... Not sure Replacement treatment is for everyone but I certainly needed it..
Tomas's e-mail address is: tbefsnb AT the-beach.net (replace "AT" with "@")
NOTE: Tomas has not updated his story for more than 15 months, so you may not receive any response from him.
