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Posted 4/1/2011 5:44 PM (GMT -5)
I had my blood drawn on Monday, and the results on Wednesday were disappointing, but not unexpected.  I rolled a .19, which has me in either SRT or Proton therapy in the very near future.  I am leaning toward the proton therapy, although it means being away from home for two months.  I have been in contact with the University of Florida, and when I told them that I had to take the next step, they were in contact with my uro within the hour.  They want me to do a 4 day trip to do preliminary procedures, and then spend two months or so down there for treatments.  I have done some research, but I haven't heard first hand from someone that actually did the proton therapy.  I tend to discount the testimonials that any outfit gives on their own website. Any thoughts would be appreciated.

                                Cheers,

                                           Paul

Posted 4/1/2011 5:58 PM (GMT -5)
Paul, sorry to hear the news. I hope your next step in the fight is the one that will kill it completely. On another note, I don't recall hearing that proton was available for BCR patients. Is this something new or have I just skimmed thru too much stuff? I really thought you had to have a prostate to get proton.

In any case, I hope you make the best decision for yourself and have an easy and uneventful treatment, whichever you choose.
Posted 4/1/2011 6:26 PM (GMT -5)
Paul; keep your chin up.I meet with the rad doc on Thursday to plan our attack!
Posted 4/1/2011 6:53 PM (GMT -5)
James,
Proton therapy has actually been used with some good success after surgery. Check out protonbob.org and there are some testimonials about it. These are the ones I was referring to when I said I had reservations about testimonials on a website where you are selling your product. I am not going to Loma Linda, but that is the website with the most info. I actually found out about the proton therapy from my dentist. He has had 2 other patients that had success with the protons.

Da Slink....Good luck to you as well. Let's beat this chump!
Posted 4/1/2011 7:44 PM (GMT -5)
Just me, but another view, most here will not agree, though many doctors will, and a few rad oncs. The official BCR is .2, which you haven't reached and your psa hit .12 6mos after op. Im curious why that did not trigger srt in your mind at least then , since you are moving that way now@.17. The latest concensus, and I use that term very loosely, here seems to be .1, I remember It being .05 and Sloan Kettering BCR is .05. So that all confuses the issue. If you have epe and negative margins or more that gives impetus to SRT now or at least by .2 . If pathology was like really clean, that bode less favorable for successful SRT, but .... You have a 2nd opinion on biopsy of 3+3, but what was the post op pathology Gleason?, that plays into the decision also. Gleason 6 is the most benign cancer , bad choice of words benign, maybe, but ther e u have it. This is all food for thought , check MSK nomagram for srt success. Talk to rad onc, but they IMO are biased and thy dont have to deal with side effects, not a slam, but that is mt opinion. A lot of the medico's my own including seem to have the opinion, hey thats the next step and regardless of success stats, its worth risk. I don't buy into that with my stats, much less a Gl 6. again food for thought
Posted 4/1/2011 7:57 PM (GMT -5)
ps the proton therapy, should have less SE and do know that it is available for SRT in mostcenters, based on Pathology. After the big blurb, I will at least say what I would do, as fellow PCA brother, only. Wait for .2 and another .2 or higher within 1mos from the first and make the call, the support is here
Posted 4/1/2011 8:04 PM (GMT -5)
sorry did,nt see the .19 saw .17 in profile, advice in last line stands.
Posted 4/1/2011 8:23 PM (GMT -5)
paul, sorry for the bad news on the psa, bcr is no fun, but sounds like you are working on a plan. good luck, and please keep us well posted.

david in sc
Posted 4/1/2011 10:05 PM (GMT -5)
In my humble opinion, I must question proton for SRT where they are going to irradiate a fairly large area..Proton excels at treating small cancers without damaging surrounding tissues with it's pencil-thin beam, but when the proton beam must be opened up to accommodate the prostate bed and surrounding tissue, the neutrons start flying and controlling the whole body dose becomes difficult..Do your homework on the entire proton technology before committing to it, it has limitations..

Also, check with your insurance company and get pre-approval for this treatment to avoid ugly surprises...
Posted 4/1/2011 10:35 PM (GMT -5)
Insurance will cover the treatments, but not the travel or the apartment rental. Fortunately, my employer is willing to pay the rent if I can work long distance online. As for the question of SRT vs, Proton, I am up for all opinions. In my experience, I have not been scared until now. I have always felt that I have been in control of my life, but now, a disease that I cannot even feel the effects of (aside from the surgery side effects), has come to dictate the course of my life. I think I have the balls to beat this. I just need to feel that I am in control of my destiny.
Posted 4/2/2011 2:33 AM (GMT -5)
Grinnell

Sorry about the PSA. Highly stresfull. We are about the same age, and what I know we might also have a similar PSA history although I am over 4 years post RT.

The good news seems to be that the PSA has not risen much during th past 6 months which to me suggests that whatever is down there is not growing fast, if at all. Have you tried any changes in you diet?
Posted 4/2/2011 6:35 AM (GMT -5)

Paul,  The Dattoli Center has an interesting article on proton beam treatment.  This is the link: http://www.dattoli.com/prostate-cancer-treatment-options/treatments-available-elsewhere/i/69.  A brief description:

Proton-beam vs Intensity-Modulated Radiation Therapy: Which is best for treating Prostate Cancer? –

The June 2008 issue of Oncology Journal (volume 33, number 7, pages 748-753) presents the most current assessment of the heated battle between protons and photons. The article is authored by radiation oncologists at Harvard Medical School, the first institution in the world to utilize proton therapy (primarily for small brain tumors).  Many of the image-guided techniques (especailly DART) cannot be accomplished with protons.

Hope this helps.

Carlos

Posted 4/2/2011 8:43 AM (GMT -5)
What were your post op stats? Gleason, margin status, staging?
Posted 4/2/2011 3:25 PM (GMT -5)
My first attempt at a blog.  I see most list their info, so here is my husband's.

Age at diagnosis 68.

PSA 6, biopsy 8/10, gleason 9.

Radical surgery 9-07. Lymph nodes and margins clear.

PSA neg until March 2009   .09, June   2009   .13,  Spt     2009   .18 

Hormone therapy. 9-09, 12-09, 3-10, then stopped

neg PSA Dec, Mar 2010

Sep 2010 .05

March 2011   .40.

See doctor Thursday.

That's an awful big jump in 6 months, and over the threshold of .20.

Been a bad week wondering what is next.

Round three begins.

nif

 

Post Edited (mom6570) : 4/2/2011 10:56:16 PM (GMT-6)

Posted 4/2/2011 6:28 PM (GMT -5)

mom6570 said...
My first attempt at a blog.  I see most list their info, so here is my husband's.

 Looks like your new, welcome  .The guys and gals are really great here and also have all kinds of info  that may help you and your husband on your journey.

DEIDRE

Age at diagnosis 68.

PSA 6, biopsy 8/10, gleason 9.

Radical surgery 9-07. Lymph nodes and margins clear.

PSA neg until March 2009   .09

                      June   2009   .13

                      Spt     2009   .18

 

Hormone therapy. 9-09, 12-09, 3-10, then stopped

neg PSA Dec, Mar 2010

Sep 2010 .05

March 2011   .40.

See doctor Thursday.

 

That's an awful big jump in 6 months, and over the threshold of .20.

Been a bad week wondering what is next.

Round three begins.

nif

  1.  
Posted 4/2/2011 7:31 PM (GMT -5)
Thanks, Deidre.

I'm not familiar with all the terms and abreviations, but it looks like yours had radiation for metastisis and is on the hormone suppression therapy?
Mine had the bone scan in both rounds one and two. All clear, but I suspect it will be repeated in round three.
It must be very hard for you now, with the PSA going up even with the low T. ANd of course worse for him. I expect we are headed that way. I guess that's why I wrote here.
It does help to know that you are not alone, and each one of us can understand.
nif
Posted 4/2/2011 8:45 PM (GMT -5)
mom6570, Welcome to the forum. As a point of info. The T in Deidre stats are for testosterone level. And there is no info that indicates metastasis or HT. What is indicated is the SRT failed and the cancer is systemic. This is different from metastasis. Systemic means there are cancer cells somewhere else in the body other than locally near prostate bed. Metatasis, means that the cancer has taken up house in one of the organs, usually the bones. The avg time from BCR, according To Walsh and others, to metastasis is 8 years. And that is without SRT. Ht is the next step of the journey, as to when that would happen is between the patient and hopefully a medical oncologist that specializes in PCA. Find a copy of Doc walshes book on PCA and study it and your knowledge and quite frankly any fears you have will be greatly reduced. A gleason 9 is no cake walk but there are plenty of g9's who have been surviving with PCA for many years. On the page where your post is shown, there are links which will also help, i.e. medic abbreviations. Good luck to you both.
Posted 4/2/2011 9:37 PM (GMT -5)
Patterson--I have been on a low-fat, low sugar diet for the last six months or so. I have been taking pom extract, green tea, and acai since December. My workouts have been a little inconsistent, though. I do need to get back on that program.
Carlos--Thanks a bunch for the link. That was a great source of information. I know that most people on this forum that had BCR have gone with the conventional radiation route. I wish there were a few that went the proton route that could give some insight.
Chris R--I am up skiing now, so I don't have access to my records, but, from what I remember post-op
Gleason= 3+4
Organ confined
Peraneural invasion = yes
I will get back to you with the actual details when I get home.

Thanks, Paul
Posted 4/3/2011 12:09 PM (GMT -5)
logoslidat
Thanks for the info. I didn't realize there was so much to learn. I did look for the links you mentioned, with no luck, but ended up googling a glossary. I still couldn't find what BCR and SRT are.
I will look for WAlches book.
nif
Posted 4/3/2011 12:45 PM (GMT -5)
Just to echo some of the thoughts here....

My PSA went up to .2 fives months post op at age 46 (4 1/2 years ago).  We used .2 as a trigger point for radiation therapy (positive margin).  I looked into Proton, but at the time, using it for SRT was a bit newer appraoch.  I was also told the radiate a fairly broad area of the prostae bed, so the benefits of proton for SRT were limited (at that time).....The tie breaker for me was the having to move near a center to do it.  I dodn't think it was worth it.

I did 36 session of IMRT at a center 10 minutes from my home.  Side effects were minimal - didn't miss a day of work and felt pretty good -- a little fatigue at night about half way through.  I also was on Zoladex.

Four years later, my numbers have been good and I feel fine.  The radiation did change some things for me -- I'm a bit prone to urinary tract irritation.  I had non-nerve sparing surgery due to exstensive cancer involvement, but can still perform OK sexually (sometimes with Cialis...sometimes not).

I was told that us "younger guys" do better with radiation and side effects.

Draw your own conclusions and do what's right for you -- just thought I'd share an experience from another guy around your age -- I also wondered if I "had the balls" to do what I had to do....not really an issue - and I'm pretty much a wuss!

Good luck!

Posted 4/3/2011 1:33 PM (GMT -5)
BCR biochemical recuurence SRT Salvation radiotherap, not complicated just a lot. Just stay on the step you are in, don't go to far , unless you can absorb it all. I think I used links in the wrong way, they are really just topics. There is a wealth of knowledge here, but it does fall on to the individual to glean whats right for them and this does take knowledge.
Posted 4/3/2011 1:42 PM (GMT -5)
I shud have proof read last. Anyway On the pca topic page the 3rd topic down is called Prostate cancer abbreviations and yes there is a lot of info, not complicated , just alot. I confused you on initial post, sorry! We are part of your family now, keep us posted when you can. and do not be afraid to ask.
Posted 4/5/2011 8:41 PM (GMT -5)
Post-op stats are now posted in my signature. I think I may be leaning towards radiation instead of proton therapy now,
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