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PROSTATE CANCER SUPPORT SITE

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David White and Frances live in WA, USA. He was 57 when he was diagnosed on November 15, 2006. His initial PSA was 11.5 ng/ml and His initial Gleason Score was 7. He was staged T2 and has not yet decided on his treatment options. Here is his story:

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 raidioloy 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 benefitting from the wisdom of those that have been there, as well as sharing anything I learn along the way.

Thanks--David

UPDATED

December 2006

 

PSAs of 7.0 ,9.0, 11.5 in March, September and November of this year; Gleason 7(3+4), no perineural invsion noted re the positive biopsies. Pattern 4 is less than 5% of the total tumor.

Have consulted surgeons, radiologists and medical onocologists, cannot decide which treatment option to pursue. Frustrating process to say the least, but recognize that is what it is, so..

UPDATED

April 2007

 

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.

David.

 

UPDATED

July 2008

 

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 pretreatment 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 pretreatment, 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.

Imua. David

 

UPDATED

October 2009

 

 

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.

David's e-mail address is : alohaoe2@comcast.net