Still in the gathering information stage in an attempt to make the best choice possible. Realize lot's of variables, and there are no guarantees, just trying to improve the odds. Originally leaning towards open nerve sparing radical prostatectomy, as have an expert surgeon referral, and would then have a better handle on whether it had been confined to the prostate. Of course, concerned about adverse side effects, particularly risk of incontinence. Currently consulting with radiology oncologists, and very curious re the proton beam therapy at Loma Linda University, discussed here by Jones?
Trying to communicate with him about that and the prostascan technique, email listed in the post was rejected, so....Look forward to benefiting from the wisdom of those that have been there, as well as sharing anything I learn along the way.
PSAs of 7.0 ,9.0, 11.5 in March, September and November of this year; Gleason 7(3+4), no perineural invasion noted re the positive biopsies. Pattern 4 is less than 5% of the total tumor.
Have consulted surgeons, radiologists and medical oncologists, cannot decide which treatment option to pursue. Frustrating process to say the least, but recognize that is what it is, so...
After much gnashing of teeth and other bodily parts, settled on Proton Radiation Treatment (PRT) at Mass. Gen. Hosp. (MGH) in Boston for my PCa.
Settled on that due to 50/50ish chance according to Partin tables that it was outside the prostate, as well as the Bragg's peak nature of PRT(delivers high dose to target, without a lot of entry dosage, and little to none after load delivered).
Treatment went very uneventfully, little to no significant side effects(urgency and frequency went up a bit, slight burning upon urination every once in a while, and softer, more frequent bowel movements; currently nearly dry orgasm's, but he still works, at least for now:-) ED issues (30-50%?) usually show up on down the road with PRT, anywhere from a couple of months to a couple of years; often resolved with aid of the little blue pills I understand). Total of 79 Gy's delivered over course of 8 weeks, alternating hips as entry point for beam.
Folks at MGH were very professional, yet human; they also have a great cancer resource center, great access to internet via supplied computers and internet hookups, free long distance phone usage, library resources and assistance on research, very helpful staff, etc. Also had some great support stuff like gentle yoga classes -- try it, you'll like it) Temp housing is quite expensive(highest rents inthe U.S), but MGH maintains some assisted housing facilities, limited and basic, but quite adequate. On balance, would recommend to anyone considering such treatment, altho the winter weather sucked:-)
Feel free to drop me a line if you have any questions re treatment selection process or life with PCa in general -- as they say, life is good -- and as any of you that have gone thru this can attest, being in a cancer treatment center simply makes you grateful for that which you don't have to endure -- the young kids with brain tumors were particularly hard to watch having to go into treatment.
Currently 16 months post treatment. Only known side effects are mild/moderate ED issues; basically, the old side kick isn't what he used to be,(i.e. erections are not as hard, or as easily obtained/lasting) rallies to pre-treatment status on occasion, and also with the aid of the little blue pill. Little to no ejaculate.
I also don't seem to have the overall energy that I believe I had pre-treatment, experience a feeling of fatigue almost every day, but may be a function of my imagination or other factors like diet and irregular sleep habits. Otherwise, life remains good.
My post PSA's (from a pre-treatment high of 11.5) with months approx. from completion of treatment,have been 4.5(6 mo), 3.2(9 mo), 4.2(12 mo) and 2.6(16 mo). Big sigh of relief that it went back down from the "spike" of 4.2. Doc indicated that while not favorable, such spikes happen, and it should turn around, which thankfully it has. Hoping/presuming that it will keep on going down to a nadir sometime 2 years post treatment.
Hang in there if you're trying to make a treatment decision, all you can do is figure what you think will best work for you and then go for it, and don't look back.
After two consecutive readings of slightly more than 2.0 taken 20 and 24 months after treatment conclusion, was getting a bit bummed that might have reached a relatively high "nadir"; thankfully, last test, conducted at 30 month mark, dropped to 1.3. I am grateful the number is still heading in the right direction, and am hoping for such trend to continue and/or level off at such a range and hold steady thereafter for the requisite five years or so to indicate a good result.
I continue with no significant adverse affects, although I encounter a bit of fatigue late afternoon, unknown source, and I would rate myself about 50% of my old self in the E/D department, which affect came on gradually starting at about 12 months post treatment. There is also of course little to no ejaculate.
My slowly but steady PSA decline had one upward bump, then resumed going downward. Unfortunately, three years post treatment, I have had another "bump of approximately 0.20; I am currently waiting three months and will have my PSA rechecked. If it has not resumed a downward/steady trend, I will be going in for further consultation.
I am now 5 years post treatment; PSA, while not as low as I would like it, has remained steady at approx. 1.0 for the last 2 years. Little to no side effects; slight ED issues, blue pill assists, and it somewhat ebbs and flows. Good luck to all in reaching your decision.
Remain with low/stable PSA some 6 years post treatment, with only minor ED side effects, none other.
I continue low PSA some 7 years post proton radiation treatment at MGH in Boston. Minimal side effects, very slight ED and urgency issues continue, but are of no real import/manageable, tolerable etc. Several large insurers in the U.S. are considering denying coverage for proton radiation treatment on basis no discernible difference/it's more expensive. If you are considering such, do it now if your numbers warrant. I remain convinced it is a "better" treatment, both for "cure" and lesser side effects reasons.
I remain apparently prostate cancer free some 8 years post proton radiation treatment, with a PSA of less than 1. Unfortunately, I was recently diagnosed with a gastro-intestinal stromal tumor, or gist. also unfortunately, it was located in my anus. It's been surgically removed, and I am currently on a regime of gleevec, a targeted cancer drug.
I mention this 2nd cancer only due to a strong suspicion on my part that it may be related to the radiation treatment I received. No Dr. has indicated they share this conclusion, although I have not pursued it beyond a question or 2. No restraints were used in my treatment at MGH in Boston, i.e. small movements were possible/occurred while the radiation dosage was being administered. I would hope that this issue is now being addressed in current treatments. My prognosis for the gist is basically 50% chance of survivability/recurrence within 5 years.
Hang in there all; life throws us curve balls, we just have to keep swinging at them/never give up. Imua, David White
I am now 9 years post proton radiation treatment (MGH in Boston). PSA remains less than 1. Took a while to reach that low point, but decline was slow and steady. Highly urge folks to get PSA's, act responsibly and calmly when get results, evaluate with doc's, etc. Good to get more than one professional opinion before acting.
I have developed a second cancer, a gastrointestinal stromal tumor, or gist. It was in my anal area. Lab analysis indicates it was not consistent with secondary radiation caused cancer. I have my practical doubts, as it is a very rare form of cancer, particularly in the area affected. If you chose radiation treatment, inquire whether they secure you to the table before administering the radiation.
Low PSA's to all, David
David's e-mail address is: firstname.lastname@example.org