After about 10 weeks of study, the process of elimination is determining my treatment choice.
Due to the high morbidity rates of surgery (robotic or open), this treatment option is all but gone from consideration. [Newbies often confuse morbidity with mortality: morbidity is the technical term for side effects, mortality refers to death. Robert's concerns are about high levels of side effects, not high death rates.] It also appears that the radiotherapy community can produce better long-term (5-10-15 year) cure rate numbers than the surgeons can. The robotics group has no such long-term numbers because it is relatively new. [There are no good independent studies that enable clear comparisons to be made between the various therapies.]
Only combination therapy (IMRT (Intensity Modulated Radiation Therapy) + seeds) and proton therapy remain in consideration. Visiting University of Florida's facility in Jacksonville with my wife on July 5 and will pull the trigger on a treatment option immediately thereafter. I hope they can produce convincing evidence of their long-term cure rates, as the proton therapy morbidity rates appear superior to all other treatment choices. If they cannot convince us, combination therapy it is.
Decision day came and went last Thursday.
After 3+ months of intensive study, I needed a few more days to ponder the biggest decision of my life. In the end, I chose IGRT + Brachytherapy over Proton Beam Therapy. Surgery was eliminated early on due to the amount of patient feedback I received about long-term side effects.
Proton looked so good that it was extremely difficult to say no to. After my deductible, my insurance would cover it 100% and the UF facility is Jacksonville, FL was ready for me. The published results were just not there to support a PBT decision for an intermediate risk PCa situation like mine (T2b). If I was a true lower risk T1c patient, it would have been PBT for sure.
The documentation of external radiation + seeds is extensive for the intermediate risk PCa category, and the published cure rates are superior to virtually every other choice. Knowing that my choice may yield a few more potential side effects than PBT. I will be as proactive as possible concerning potential sexual and urinary issues and work for the best possible results.
Gold markers will be placed shortly and I am ready to go.
It has been way too long since my last update. Everyone please pardon me.
After 28 sessions of IMRT/IGRT, I had 88 Iodine 125 seeds implanted on October 12, 2011. The procedure was performed by Dr. John Sylvester of Blasko, Grimm & Sylvester fame. He is now practicing in Sarasota, Florida as is Michael Dattoli. In any event, the procedure went well, and accurate seed placement was confirmed with a CAT scan.
Since then I have had two PSA tests. The first test was 1.1, and I was thrilled, followed three months later by a 1.3 reading. I was a bit freaked by the slight bounce but was assured that this is not a big deal as it is within the statistical margin of error, and readings tend to bounce sometimes. Since the procedure I have a little urinary burning now and then. Dr. Sylvester suggested Aleeve for two weeks prior to my next PSA test. I started yesterday. He believes I have a little bit of inflammation influencing the PSA level. We will see.
Sexual function seems to be about the same. I have been convinced that with three PNI's my nerve bundles in that area must have been targeted to some degree. As a proactive measure I was given ED drugs to take both daily and if needed, but they do not seem to have a big effect. If there is a difference, I have expected it to be with nerve function not blood circulation. Sexual function is good without the drugs and with them. There was blood in my ejaculations about a month ago, but it has now cleared. I was told it happens to some patients like me and is nothing to worry about. It is very hard not to worry.
I will report back after my next round of PSA tests and check-ups. No regrets on my treatment choice or choice of doctor so far.
It has been 22 months since I receievd 88 Iodine thin seeds (after 28 sessions of IMRT/GRT) and my PSA has been through a bounce. Today's PSA reading was 1.3 and my Oncologist (John Sylvester) believes I am doing great. This is coming off a 1.9 reading during my last visit. Obviously I would feel more comfortable if my PSA was .2 or below, but he assures me this is perfectly normal, and in fact those with a "classic" PSA bounce like mine typically have a better cure rate. He also added that about 10% of patients receiving combination radiation therapy like me do not reach their PSA nadir for as long as 48 months.
While I do not urinate exactly the way I used to, I really do not have any complaints. Zero incontenence, and even my mild issues (frequency) seem to improve every week. I feel "normal" in this sense.
While my erections are not as rock hard as they once were, I am as active as ever. No ED issues to speak of. One bonus is that sexual climax is now far more intense since treatment. Not a bad side effect after all the crap with the news of PCa, treatment, worry, etc.
Other than some fatigue during IMRT, I have lived a very normal and active life. There is always a bit of worry in the back of my mind, but given what may have happened, my life is really great.
It has been a long while since my last update, and I must sincerely apologize to everyone. YANA was very important to me when I needed help, and fresh information is very important to YANA.
After floating along with some post-treatment PSA readings that did not look great, and experiencing a "PSA bounce" my radiation oncologist, John Sylvester, suggested I stop being tested every 3 months. He reassured me that about 15% of men take up to 40 months to reach NADIR, and a slow drop with a bounce is optimal. While my PSA continued to fall, except for a bounce, it was not dropping to the levels that would cause a man to breath easier. Now, after about 32 months I have hit .4 and have about a 2% chance of recurrence. It appears my PSA may still be dropping. This was the news I had been looking for.
I always said that my choice for 28 sessions of IMRT followed by 88 Iodine Thin Seeds would be a decision, for better or worse, I would never regret. That thought and feeling never wavered.
Even though I have experienced very little in the way of side effects, I do not believe any man is the same after treatment. I continue to function quite well sexually, but not to the level I did prior. I have virtually no urinary issues, but once in a while I will find myself with some atypical urgency. My system is operating as before, but I have some morning bowel urgency, virtually always after an evening of too much alcohol. All-in-all, I never thought my life would be as normal as it was before treatment, and it is indeed.
I decided on my treatment option due to its excellent long-term track record and the lack of long-term results from robotic surgery, Cyberknife, proton therapy, and several others. I assumed living 20-30 more years after a successful treatment, so long-term stats were critical to me. After hearing so many negative stories and communicating with so many men with treatment option regrets, I am glad I viewed treatment options and potential side effects in this way.
I had a lot of help from a lot of guys on YANA and elsewhere. Best wishes to everyone!
After a longer than expected post treatment period, I finally got the 0.2 reading I had been hoping for. It took about 2.5 to 3 years to get there. My radiation oncologist, who I view as a rockstar, says that the PSA bounce I experienced about a year after treatment and the slow PSA drop generally are both very good signs. He told me that admittedly they do not understand why, it is just statistically true. Sounds good to me.
In any event, I find myself a part of a anti-prostate cancer charity, hold two fund raisers every year and continue to talk with just diagnosed guys who just want someone to talk to who has been through it. It's great. I had so much help from so many guys.
Pardon the ramble, but I came out of this far better than expected and thank God for granting me patience while I decided what treatment was right for me.
Other than some sporadic morning bowel and urinary urgency, that is mostly related to alcohol consumption, I am pretty much back to normal. Original issues with ED have actually gotten better and in hindsight seem to have been as much mental as physical.
I always tell men undergoing treatment that they will never be quite the same afterwards, but I feel blessed to be living a very normal life after both IMRT and seeds.
Not much has changed. I am doing better with ED because I have been working out hard. Sure does make a difference to be in shape.
Still experiencing some morning bowel urgency....especially after alcohol the night before.
Have experienced a mild case of Peyronies disease. Finding that a lot of other PCa survivors have also. Doctors are resisting any link, but the link seems somewhat obvious. I would love to know if even others have experienced it also.
No regrets about my treatment choice.
Robert's e-mail address is: rdean59671 AT gmail.com (replace "AT" with "@")