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A month has gone by with no new entries. Accordingly I fell compelled to share one of my journal entries for review and comment; see below:
Setting the Record Straight
Following my diagnosis of recurrent cancer, a few folks have asked,"If you had it to do over, would you choose proton therapy?" My answer is an unqualified, unmitigated, "YES." My initial research indicated several available options demonstrated a high degree of success. Proton therapy and surgery appeared to be more effective when compared to brachytherapy, cryosurgery and various types of photon therapy. No less effective than the other options proton therapy stood out because of fewer, less severe side effects. A high success rate combined with minimal side effects appealed to me then and strikes me as being equally persuasive to this day.
A few weeks ago an internet friend informed me that of the several thousand prostate cancer patients treated at UFPTI since opening in 2006, I am one of three individuals whose proton therapy proved unsuccessful. UFPTI issued a press release this November which contained the following stunning success-ratio statistic:
"Five year progression free survival rate of 99 percent in low-intermediate-risk prostate cancer patients."
If only I could locate an equally effective means of treating my recurrent cancer.
If I made a mistake along the way it was not securing a second opinion on my original biopsy as recommended by Marckini et. al. Although, before initiating treatment, UFPTI confirmed my original Gleason score as being 7(4+3). At a much later date using the same set of slides Mayo Clinic concluded my score was actually 8(4+4).The Mayo clinician who called this to my attention speculated that had UFPTI concluded likewise my radiation may have been preceded by one or more doses of Lupron which may have prevented the recurrence.
Why the soul searching and hand wringing at this point you might wonder? Well this exercise represents my attempt to set the record straight. In so doing I hope to enable others who follow in my footsteps to make a good decision for themselves
I've been fighting this disease for twelve years now. I use to ask myself;
Me: Did I make the right decision?
Answer: Don't know.
Me: Would I do it over again, the same way?
Answer: Don't know.
Me: Does this exercise in doubt make any difference what-so-ever?
Answer: No more than a fart in a hurricane.
Don, I think your "internet friend" might have been quoting a wishful statistic. 3 failures? Please. At 99% cure rate, doing 500 procedures per year for 12 years (they started in 2006) would give a mean failure number somewhere between 50-60, not 3.
Also if you really had an initial Gleason of 8, that would mean you were actually high risk, not low to medium. I believe the cure rate for high risk PCa at UFPTI is 70-75%. I had a Gleason 8 when I talked to them in October 2011. They told me they "don't usually" treat high risk PCa but was willing to treat me if I joined a clinical trial of taking 9 weeks of low dose chemo (docetaxel) while I was getting protons and follow up with 6 months of ADT (trelstar). The chemo made my proton therapy very difficult (I had to take a 1 week hiatus halfway through because the side effects were so bad (severe cramps and rectal bleeding). After 8 years I can still get no official trial results. I have heard that in other non-proton radiation therapies, adding chemo only improves cure rate less than 10%. If I had to do it over again, I would have had protons, but no chemo (the 6 months of ADT was tolerable).
Of course I was one of the 25% who got a bio-chemical failure at less than 5 years. I went on Lupron for about a year and begged for a break. I was put on a Lupron "holiday' but my latest PSA test shows I have a PSA "doubling time" of less than 6 weeks so I guess I'll be going back to Lupronville shortly.
I guess the bottom line is there is no perfect cure.
Joe; The part of your post that said they don't usually treat high risk cancer makes me feel like they aren't that confident in their treatment and this would make me very skeptical. Maybe it is like a bucket of water is enough for a small fire but a more serious fire needs a real fire hose type treatment? It is also possible that only taking the less serious cases lessons the risk of failure and keeps their success percentages more impressive.
More and more I feel that if one has a case that will need treatment at some point - in spite of the drastic consequences - get the sucker out and be done with it. Even if initial, less drastic, treatments can knock out the bad part - what keeps the leftover healthy tissue from developing a new cancer later on? It happened in the first place so what are the chances that it won't happen again? Just my feeling on the matter. Nothing in this journey is for sure. I have said it many times and continue to believe - it is but a gamble with many uncontrollable variations. Hang in there guys! Jon.
I think the reason UFPTI said they don't do many high risk is simply because there are many more low and intermediate risk cases. I was at UFPTI for about three months getting proton therapy and probably got to know 50-75 other patients. (We played golf and went to dinners together.) A great group of guys. But no one other than me was high risk. No one else I knew had any other problems during therapy than me.
I'm not sure where Don got his 99% number, as I remember from my monthly UFPTI newsletters alums receive,
they're were claiming about 90% non- BCF after 5 years for low/intermediate PCa. I do go to my local monthly UsToo meetings for PCa survivors. In 6 years of meetings there has never been another person who had protons. (If I ask them if the ever considered protons, they said "No" because their urologist didn't recommend it, DUH!!) At these meetings, 90% are these "get it out" guys who have had radical prostatectomies (most are robotic). They are smile say they are happy to be alive even if they use 2-3 pads a day and haven't had sex since Clinton was president. No Thanks. Until I had to go on Lupron a couple of years ago, I had no ED or urinary issues. Life was good and the envy at my UsToo meetings. I did have some runny bowel issues years ago, but I believe that was a direct result of the chemo. No one else had any problems while I was there.
One more thought, I live in a community where most folks are on Medicare and I know 3 neighbors that are PCa survivors. All three had radical prostatectomies (two open, one robotic). One is "OK" (complete ED of course). Of the other, one is in BCF but holding out on ADT, the other is Stage 4 CR Metastatic PCa and has just finished chemo-he tells me some days he can't get out of bed. Surgery has its risks too.
Just for the record I was treated in 2009.So we were talking about a three year period not 12 years.
You can rerun the numbers if you wish.
The point is I was one of the precious few whose PBRT was unsuccessful.
G'day Don and it has been quite a while since we last had a chat. I do think of you every now and then and check your blogspot to see what is happening with you. Sad to read of your current dilemma re treatment options. Still you know the drill only to well, so no unexpected surprises on the horizon. I think we have both have had interesting journeys over the last decade or so and I fondly remember the discourse all of us (RIP Terry) used to have on here in the old days. My best wishes to you Don.
Cheerio John Bonneville
p.s. My PCa has still not progressed, albeit eleven years plus post treatment. Might get to better Terry's innings yet!
Just now saw your note otherwise I would have responded much sooner. I've often wondered how you are doing.
Good to learn there has been no progression in your PCa. That's about as good as it gets these days.
What a pleasant surprise to hear from you. I miss your contribution to the YANA cause.
Best wishes Don O.