Rising PSA after Proton Therapy

A friend of mine had proton therapy for PCa about a year ogo...in that time, his PSA has risen from .7 to over 1.   He went back to his urologist and asked about further treatment, including hormone therapy.   His doctor warned him not to go on hormone therapy, that it could cause heart problemns, unbearable hot flashes, and give him a PERMANENT loss of libido even if he were on it a short period of time.

Not sure where the doc is coming from --- I assured him my experience with HT was not permanent.  It did raise the question, what ARE the salvage treatment options from proton therapy?   He's going in to get more imaging to see if there is traceable residual disease.

Don't know any other of his stats.....any thoughts?

zufas, why don't you post your own stats right here on a regular basis? You give a lot of off-beat advice, treatment possibilities way outside the box, etc, and this is good, because it widens the arena of choices with people and their PC. But I think others, myself included, would feel more comfortable if they saw your own case, and how its affected you, and if any of these other methods are really helping or not. Just somethingto think about.

David

Sterd, this is an interesting post. I dont have an answer, because my husband had the salvage surgery after radiation, which I would NEVER suggest...but now his psa is rising again, two years later. We are sort of in the same predicament. Pete does not want to do anything at this point... I would be interested hearing what others would also say....

Zufus. We are going to need some outside of the box opinions very soon.. Petes PSA has risen since August from .4 to the latesta this month at .7. Diane

With you Tony, on the check and verify and see another doc like an onco-doc or even others, in case his psa has anyother probabilities, I am less inclined to believe it is radiation bounce as when that happens the rise seems to be alot higher than seen herein, plus his rad-doc probably would have said so too(seen bounce numbers that were fairly significant from others, followed by declines...thus it turns out to be bounce and not a rising psa...scary for the radiation patient when they see it) and happens they say about 30% of patients and usually is a bit over a year since treatment and some weird cases has turned out to be 4-5yrs. down the road on the other end of the spectrum (talk about wild duration wait to see).

Now brother Purg./Davids question: my (  ) non-main stream treatments you speak of are just because you have not heard much about them, you don't know much about the world of the leading onco-docs: Vogelzang, Sartor, Myers, Scholz, Strum, Leibowitz, Tucker, Barken, Labrie and others.
They have used a multitude of drug protocols, including the the ones I am doing or have done. Labrie is the father of the type of "casodex" per se and has been with around for many decades, he was considered non-main stream when he introduced its useage(lucky for many patients options the 'junk' worked for them)....today....it is one of the most commonly precribed drugs for PCa treatments. Their is data, journal articles, abstracts on the majority of these drugs in the PCa if you wish to look for them, we have options.....and I guess alot of us whom are in the non-curative realm, we don't like the idea of being a doormat and dying with PCa if we have choices, it seems we have some choices that can atleast prolong that ending. Also, David if you can produce a number of patients whom started out with total urinary blockage and the high end stats I started with that are: 1) alive to talk about it 2) doing fairly well with low psa numbers 3) without signs of mets or pains 4) feel very well and normal, no fatigue etc. 5) all this 7 yrs. from the emergency room blockage gig. I would like to see or talk to those others and also see what paths did they take, were they the 'norm'. I am familar with some of the cases on yananow.net and there are not many, especially with the blockage thing. I have seen patients with less stats or way less stats than I have, whom died within 3-5 yrs. even with treatments and ADT therapies. Cannot prove anything perhaps and especially to skeptics, even the onco-docs have trouble on that one, they do have alot of patients coming to them even as references from other patients cause something worked better. One of the reasons I don't post all my history, it is not for every patient and might not be for hardly anyone, but it is a choice, the people with no future hope seen in PCa, when going down the road are looking for anything of value, life is valuable to us and so we try. Here is Bob's history aka-neutrondbob and zufus:

Dx-2002 Total Urinary blockage (most painful) drove to emergency asap, bPsa 46.6 DRE-felt something, ultrasound non-definitive but suspecious, on flowmax immediately and catheter on for about 7-12 days (before I cut it off-and flushed it), biopsies 12 of 12 all cancerous at 80-95% levels , Gleason scores given as found 7,8,9's two sets about the same exact numbers on both sides of gland.
Gland size was close to normal range (go figure), overal I was given Gleason 8 which is unique (was done by considered expert-Grignon). Treatment: ADT3 combo hormone therapy 5-6 months prior to unique radiation protocol of Neutron 10-sessions(Cyclotron) & Photon 20-sessions (IMRT) machines used, contd. ADT3 for 2 yrs., psa started very small rises on ADT3 over 8 months(8-increases,too)..like .4 to .55 to .78 etc., somewhere before 1.0 dropped the ADT3 and started DES 1 mg., cancelled all side effects from ADT3 quickly, psa dropped quickly and stayed low around .4-.5 ranges(stabilized) for 1.5 yrs.(which was not the case with ADT3 at this juncture), so I decided to quit and see if psa would shoot up fast or not (had to know what the dragon was), I get psa tests often walkin testing here is $15 so I can monitor often, psa got to 1.4 in Nov. 2008, resumed DES ,the last 4-5 psas in the last couple months all downward and now psa is between .36 and .39 range, might even do better, we shall see.

now zufas, don't like people putting words in my mouth, i never said or infered anything nutty about what you say or produce here, if you read my verbage closely, still being complimentary. I am looking at some of these posts from the point of view that most of us are exposed to the typical treatments of surgery, radiation, seeds, hormones, etc. I think the learning of all options is important, and I have repeatedly said that in my posts. Lots of things I haven't heard of, sure lots of things you haven't heard about either. I still find your contributions important and interesting.

david

To get your choice of word off the table, again, I never said any of it was nutty.

Tell your Proton friend not to panic. Some patients never get below 1.0 and bounces are common. I would talk to my proton Doc. Many Urologist don't know anything about Proton Beam Treatment. I would watch the psa carefully, perhaps every 3 month for awhile to see if this is a bounce.

Tudpock,

Is there an easy layman's way to explain the bounce you refer to, I had heard of it before, but still struggling to understand the "how" part of it.

David