Totally confused

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

orickster
Regular Member


Date Joined Dec 2009
Total Posts : 22
   Posted 12/28/2009 8:38 AM (GMT -6)   
I made a call last week to Loma Linda and inquired about proton therapy after surgery, and was told this procedure was not available after the prostae had been removed. Of course, I spoke with someone different instead of the person I was calling. She suggested cryotherapy.  I then called a friend who works in the medical field in Ca.  who is going to look into this for me. Keep in mind all this happened over the holidays.  Hopefully I'll hear from her soon. But for now, I see a radiation onocologists this afternoon.  Hopefully I'll get some answers.  All I know is I'm ready to get the show on the road, but want to make the best choice. I hate living with this, but this forum had been very helpful to me, thanks to each and every one of you.
 
Regards, Orickster 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/28/2009 9:48 AM (GMT -6)   
Is there a reason why you can't or don't want IMRT or IMRT Topography for your salvage radiation? Both should be easily available to you.
Many of us have gone down that path here, I ended mine a month ago.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 12/28/2009 9:57 AM (GMT -6)   
OK, now I'm confused.
 
Call M. D. Anderson in Houston and see what they say.  I am pretty sure they told me the opposite, but I could be wrong.
 
Zen9
No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
December 2009 = <0.1
 


orickster
Regular Member


Date Joined Dec 2009
Total Posts : 22
   Posted 12/28/2009 10:15 AM (GMT -6)   
Purgatory and Zen 9:
 
I have nothing against IMRT. In fact, I know nothing about it. I've just heard that the proton is the best route to go according to my research, and word of mouth.  I just want to make the best decision for my family and myself.  Either way, I talk to the Doc today, and will address the options best for me.
 
Orickster

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/28/2009 10:41 AM (GMT -6)   
Orickster,

I am not sure that the proton for salvage treatment would be the best or not, proton in general is in a very minority group of standard treatments. I know nothing about it, other than what you can read on the net, nor do I have anything against it as a possibility.

Considering how few proton centers there are, there couldn't be that many people that have used that method for salvage.

On the other hand, standard radiation, including IMRT has been around for decades, and has steadily improved over the years. There are no shortages of good radiation clinics around the country to use, and plenty of well qualfied radiation oncologists to work with.

Be interesting to hear what your doctor has to say today. I was suppose meet with mine today (rad. oncl) for a closing visit, but still awaiting the results of my first post salvage radiation PSA test. The holidays messed all that up, lol.

Please keep us posted.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/28/2009 10:44 AM (GMT -6)   
P.S. here is a link to an article that talks about salvage radiation options, and it does include proton beam.

http://knol.google.com/k/salvage-radiation-for-prostate-cancer#
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place


orickster
Regular Member


Date Joined Dec 2009
Total Posts : 22
   Posted 12/28/2009 10:44 AM (GMT -6)   
I will definitely keep you informed, and good luck with your visit today.
Orickster

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 12/28/2009 10:54 AM (GMT -6)   
Orickster,

Try this site for Proton Info. The 10th story down is about a man who used Proton for Salvage treatment AFTER prostatectomy failed.

There is a lot of good info here in the other stories.

http://www.protonbob.com/proton-therapy-testimonials.asp

Good luck,

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative
da Vinci 9/17/09
Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
NERVES SPARED-positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT scheduled to begin Nov 30,2009 (74 days post surgery)


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 1/2/2010 11:58 AM (GMT -6)   
Why aren't you speaking to - consulting with - a physician or specialist about this? I think you should go back to square 1 and deal directly with people who will know you, your health history, your current situation and the wide range of treatment possibilities that are currently availalbe. You're doing yourself a great disservice. Best wishes for better health in 2010.

Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0

 


riverbend
Regular Member


Date Joined Mar 2009
Total Posts : 39
   Posted 1/2/2010 5:04 PM (GMT -6)   
Many people have had proton radiation as salvage therapy after surgery.  There were salvage guys there when I was at Loma Linda last year.  There are proton salvage testimonials on the proton BOB website.

Dx T1c in April, 2009 at 45 years old after recent PSA tests ranged from 2.93-3.25
2 of 14 cores positive at 5% and Gleason 3+3... 2 cores taken from a "protuberance" were "ASAP"
Proton radiation at LLMC May-June 2009

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 7:13 PM (GMT -6)
There are a total of 3,004,879 posts in 329,179 threads.
View Active Threads


Who's Online
This forum has 161751 registered members. Please welcome our newest member, Roadranger82.
320 Guest(s), 11 Registered Member(s) are currently online.  Details
JNF, Bob in Elkridge, BBN!!, getting by, Tudpock18, Saipan Paradise, sierraDon, caia_120, FLBeachgal, CCinPA, halbert