Proton beam was, for me, the only way to go. I did not want to be worried about ED or incontinence or the skill -- or unskill -- of any surgeon I might select.
I decided to go to the University of Florida - Shands for their proton beam therapy. I am now 11 treatments in and have 28 to go (total of 39) and so far have had not a single problem.
I am glad I decided to go proton. I have friends who had the radical prostatectomy and have had nothing but problems, to such an extent that they simply have now given up trying to have sex. That was NOT for me!
Well, I am more than 2/3 through my proton beam therapy, which means that after today's treatment I will have had 29 of 39 treatments.
All is going very well.
My sex life hasn't changed, which is great. I did have some trouble with an over-active bladder, for which I was prescribed Flo-Max, and a small amount of discomfort during urination, but nothing I couldn't handle. Just one other proton patient with whom I've spoken has reported similar side effects, but he said a combination of Aleve and 100-percent pure cranberry juice solved his problem.
The cranberry juice is very expensive, so I've been mixing 100% pure with a cranberry-pomegranate blend (27%) and drinking about 4 ounces each day. That seems to help.
I don't take the Aleve or ibuprofen because I've had ulcers in the past and I don't want them to flare up again, which is quite possible. I had some brief stomach distress when we first got here for which I've been taking Prilosec. I don't want to disturb the status quo by taking ibuprofen or Aleve.
Everything else is great. Florida Proton is a wonderful place. Some really great-looking women get patients ready for their treatments, which is nice. Plus, everyone here really treats you like you're special. It's such a good experience that some guys are sad when it's time to go home. That won't be the case with me. I can't wait to get home to Missouri where I can go bass fishing and turkey hunting this spring.
It is like a big clubhouse in the lobby of Florida Proton. All the men -- and their wives or girlfriends -- chat and compare notes. Dates are made for dinner or outings, and that just supplements the daily activities arranged by the Florida Proton staff -- things like wine tastings, restaurant tours, lunch outings, support groups for patients and also for their wives.
Florida Proton is also very good at helping prospective patients arrange housing. In our case, we live in the Midwest and we knew we would rarely -- if ever -- have the chance to spend 9 weeks on a beach, so we opted to live in a condo on Jacksonville Beach. The ocean at high tide laps just 75 yards from our balcony, and the price isn't outrageous, either -- about $1900 per month.
The Beach is about a 40 minute drive from Florida Proton, but the staff has housing lined up as close as a few blocks distant, in historic districts such as San Marco or Riverside, in St. Augustine, and even can hook patients up with housing on beautiful Amelia Island.
I cannot say enough good things about Florida Proton, especially since I'm feeling so good. My energy has never decreased, and I walk the beaches -- about 4 or 5 miles -- every day. Plus, we've been doing a lot of fishing -- but very little catching -- while we've been here.
Still, I can't wait to get home to my other life, my daughter and my granddaughter.
I will update my information as more news is forthcoming.
So, here I am a year removed from my initial consultation at the University of Florida Proton Institute (UFPTI).
I am feeling great -- have had no side effects at all -- and my sex life is even better than it was before the treatment.
My 3 month post-treatment PSA dropped to 2.5, which is fantastic. I have done the 6 month PSA test, but a recurring bout of mild prostatitis (which I was told is relatively common) has kept me from inquiring about the latest results since prostatitis can raise levels of PSA. I don't consider the prostatitis a side effect because I had recurring prostatitis for most of my life. This was one of the most mild cases I've ever had.
I have never been tired as a result of the radiation, and I feel great. The UFPTI experience was as good as it could possibly be. The people at UFPTI are wonderful, and the group of men and their wives/girlfriends are friendly, helpful and supportive. Proton therapy in Jacksonville, FL, truly is a 'radiation vacation.'
My wife and I are looking forward to returning for my one year check-up.
Everything is still going great. No problems post-treatment at all. In fact, things are as good as - or even better than - before I had the treatment.
My PSA dropped to 0.8 about a year ago, then it went down to 0.7 and now it has increased slightly to 1.0. PSA readings, for those who aren't aware of it, can vary slightly depending on the lab doing the analysis. I am not worried about this tiny spike, plus I am due for my annual check-up at Florida Proton in the near future.
Anyway, I still recommend proton to any man who is facing a diagnosis of prostate cancer. I have recommended the treatment to several men and all have been 100-percent satisfied with how it turned out for them. That is a pretty good record, I would say.
I just returned from Jacksonville, where I had a complete 3 year work up after having been treated with proton beam from prostate cancer.
I still have had no side effects, my sex life and urinary function -- and everything else -- are great, and I would recommend proton beam to any man contemplating treatment for prostate cancer.
My PSA has never reached 0. My doctor, however, said that some men will not reach that level and that she is happy with my PSA even though it moves up and down slightly from test to test. Of course, I am always happiest when it goes down, but if the doctor isn't worried -- and she has treated thousands of men -- then I'm not worried. On the occasion of my 3-year work-up my PSA was 0.89.
My doctor, if anyone is interested, is Dr. Nancy Mendenhall at Florida Proton. Dr. Mendenhall was the driving force behind getting Florida Proton constructed and in operation. I would also highly recommend Dr. Mendenhall to anyone thinking of undergoing proton radiation at Florida Proton.
We are on vacation now, but when we return home we will be sure to update our info. All continues to be well -- better than well, actually -- and I am now 4 years removed from the proton treatments.
It is now over 5 years since I was diagnosed with prostate cancer. I went to Florida Proton, this spring, and got another clean bill of health. While my PSA has risen slightly, Dr. Nancy Mendenhall, my physician, said that that is not unusual with some men who have had proton beam therapy.
I continue to do well and feel exceptionally well. I do everything I did before and, of course, I enjoy it more than ever.
Life is good, and I feel I owe that good life to my decision to have proton beam therapy. I can honestly say that I know a lot of men who have opted to go the 'fast route,' i.e., to have surgery just so they could be 'done with it,' and not one of them had an easy go of it. I did have 'an easy go,' and so have all of the men of my acquaintance who chose proton beam. Sure, it takes a commitment of time -- and insurance that is willing to pay for it -- but proton works so well, at least when compared with other therapies -- especially when it comes to side effects (in my case, none) and long term benefits (in my case, a life that is as good or better than it was more than 5 years ago).
I heartily recommend proton beam to any man out there who is dithering with himself, trying to decide what to do. I truly believe that you won't regret your decision to have proton therapy.
I am still doing well in every facet of my life: no side effects at all, and my PSA continues to be fairly low. The PSA has increased due to silent prostatitis, according to my doctors. I have been taking a dose of powerful antibiotics, which appear to have been working since I had some pain in my lower back during the first week of antibiotic therapy. My PSA immediately dropped and I am scheduled for another PSA test sometime in October to see if the levels continue to decrease. Even if they do not, I am extremely happy with proton treatment as I feel better now, in every respect, than I did prior to having cancer and prior to treatment. It has truly been a miracle treatment for me.
By the way, my doctors say that they believe there is 'no chance' that I am experiencing a recurrence of prostate cancer and I tend to believe them because, while battling pneumonia a couple years ago, I was given a PET scan and that scan showed NO cancer anywhere in my body. Proton worked for me.
Well, my PSA has been steadily increasing, which has thrown my Florida Proton doctors into a tizzy. I didn't know that they were concerned -- oh, silly me! -- until all of a sudden this spring they called me, while all upset, worried that I was in full-scale PCa mode due to the increase in PSA to 1.89.
I didn't know that the signs of recurrence after proton therapy were: 1.) a nadir PSA of more than .5 (mine was .7) AND three subsequent rises in PSA score after therapy had been completed.
If the latter was the case, well, my prostate cancer had returned about four years ago -- and no one at Florida Proton saw fit to tell me about it.
So, in April they ordered an F-18 PET scan which made them go freaking crazy because they saw a mass in my lung. When they called to tell me about it I was able to soothe them somewhat because I had pneumonia in 2001 and it settled in the exact same place where they could see infiltrate in the PET. (I also had a PET in 2009 and the radiologist reported, "Almost certainly due to an inflammatory process although neoplasm cannot definitely be ruled out." Still, that was 7 years ago, right? And Florida Proton did all of the tests on me, as well, and nary a worry did I hear -- and that was 8 years ago.
Still not satisfied, Florida Proton ordered me to have a bone scan, and MRI-guided pelvic bone scan and, of course, they discovered numerous 'lesions' that they considered suspicious. Luckily (for me), none were diagnosed as bone metastases so for now I am good.
When Florida Proton tried to make me go to an oncologist for ADT, I said, "No, not yet." My wife had started investigating other things that could be done in the event of a recurrence and she told me about numerous herbs, etc., that we could add to my diet, which we turned into an anti-inflammatory Mediterranean type of diet. I added pomegranate juice, lots of turmeric, curcumin tablets, white button mushroom powder, chamomile flower powder, olive oil, fish, melatonin, zinc and raisins for the resveratrol. Only fat I eat is olive oil; cut dairy and eggs almost completely out of my diet, recently added berberine before meals and even before I'd done all this stuff I got a PSA and it had dropped to 1.81 which was really encouraging.
I am not ready to go on ADT and I'm not sure I will EVER be ready to go on it. Of course, Florida Proton told me that if they could actually SEE prostate cancer somewhere on the scans I would have the option of hitting that place or those places with more proton beam therapy, which I probably would do before I did ADT. But I am very encouraged that after a span of about 7 weeks on the alternative herbs, etc., that my PSA responded in a positive fashion.
That is my updated story. I still feel great and everything WORKS great except for my one knee which I somehow hurt a while back. The pain keeps me from doing some of the things I like to do, unfortunately, so I guess I will have to see an orthopedist to see what, if anything, is wrong with it and what I might do to get it feeling better.
Well, here I am, I THINK 9 years post-treatment and I am not only alive and kicking but doing as well as ever. Absolutely NO SIDE EFFECTS!
I think in one of my updates I'd mentioned that I had been prescribed a bunch of scans because my PSA had been rising more than Florida Proton liked to see. We had some anxious moments as they bandied about the words 'bone mets' but they had no idea what they were seeing, apparently. After many scans I was given the all clear -- all the 'lesions' were nothing more than previous injuries I'd suffered during my all-too-active life.
My PSA had risen as high as 1.98 and then we started working on my diet. I now drink pomegranate juice -- 8-oz. per day -- eat 1/4 cup of walnuts, 1/8 cup of pecans, and take a raft of supplements such as white mushroom cap powder, chamomile, ginger, pumpkin seeds, Vitamin K, Vitamin D, Green Tea EGCG, melatonin, zinc, a statin, curcumin, probiotic, Quercetain-Bromelain-Vitamin C complex, Olive Leaf Extract, and 1 baby aspirin. I had been taking Barberry Bark -- it works like metformin -- but I was told by Florida Proton that it could cause heart problems since I also was taking the Green Tea EGCG.
My PSA has been trending downward for the past 18 months, a trend I'd like to see continue. I was really watching my diet, as well, but since it is going down I am going to eat what I want to eat until it reverses course.
I am just as happy as can be with my treatment results to date. I hope everyone who reads my story will be inspired to check out proton radiation. It was a godsend for me and my wife.
Bob's e-mail address is: osagebeach38 AT aol.com (replace "AT" with "@")