Not so much about Proton Beam

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

smilinjack
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/25/2009 6:32 PM (GMT -6)   
I was dx with PC on Jan. 7th 09. psa 4.1, gleason 3+3=6. I am 67. My Ur wanted to do the De Vinchy surgery. I found out about the Proton Beam Therapy at Loma Linda and after a lot of research that is what I am going to do.

I read a lot of posts here about incontinence and loss of sexual capability with surgery. I found out that the cure rate is about the same with surgery and proton beam. The biggest different is with the beam you don't leak ans still can have sex.

What am I missing? Why isn't the Proton cure talked about here?

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/25/2009 8:11 PM (GMT -6)   
Smilin....You have very low numbers....why not just wait awhile? Am I wrong anyone? Di
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/25/2009 8:27 PM (GMT -6)   
Hi smilinjack,

Proton is supposed to be the best extenal radiation treatment available.

The bad news is that radiation in many cases esp with younger guys does not have the long term containtment that surgery can provide given organ confined disease.

At your age, radiation is often considered the best approach.

I think Proton is not discussed much is because it is not universally available.

Please tell us more about you and your case.

Best wishes. Scott


Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 1/25/2009 8:31 PM (GMT -6)   

Smilin:

I think the biggest reason is that there are very few proton treatment centers, so patients must be away from home for a couple of months to have the treatment.  More and more centers are in the process of being built and that will increase the number of patients. 

My numbers were very similar to yours, as was my age -  7yr out and I am doing fine.  Best of luck to you and know you will find Loma Linda to be a top notch place.  Enjoy your time there.

Dutch 

 

 


Diagnosed Feb 2001  (Age 65)  Currently 73
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - 2001 - No side effects.  My journey is at: http://www.healingwell.com/community/default.aspx?f=35&m=727565
7yr PSA - 0.2
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/25/2009 8:39 PM (GMT -6)   
Smiling, welcome to our happly little family. Hope we can be some help and comfort to you. I dont know anything about the proton stuff, wasnt an option to me at the time in my area. on the surface, with your psa and gleason, it would seem you would have suficient time to view all your options without being pressured, but then we dont know much about you, ie. any family history of pc.

david in sc
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, 40 - 90%, G 4+3 & 3+4
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, Catheter out on 12/15/8. Stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08. Emergency room put in Catheter # day 45, 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/13/9 - removed blockage, put in Cath #5, 1/19/9 -out
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grams, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


smilinjack
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/25/2009 9:08 PM (GMT -6)   
Thanks for your responses...I fell better about my choice of proton therapy.

I live in the Palm Springs area. Am a retired pilot, so I was used to getting a physical every six Months. I kept it going after I retired and am glad to have caught it early. I don't know of any PC in my family.

It looks like I will be taking the treatments around the first of June. A long time out, however what I have found, it won't hurt me.

psa 4.1 gleason 3+3=6 free psa 17% prostate size 61cc I don't know my stage # 67 years old

Jack
Jack
age 67
DX 7 Jan. 09
psa 4.1
free psa 17%
Gleason 3+3=6
14 cores 1 had cancer 5%
Going to do Proton Beam Therapy


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/25/2009 9:24 PM (GMT -6)   
Yes Proton treatment can be good way to go, nothing wrong with such. There are other radiation protocols besides Proton and besides IMRT-Photon, besides 3DEBRT and besides "Cyberknife"(which also sounds impressive and probably is)????? What???? How come everyone is not aware of such????? Cyclotron-Neutron ray is a rare bird, rarer than the machines for Proton and both of them the cost is astronomical for either one of them, thats why not every place has them.

The other thing is Neutron is the most powerful ray, Proton second, and Photon third (used on patients) and should not be used by just Joe anybody as to collateral damage is possible, expertise is very important. Not because I say so, but data says so. I just happened to chose this when I was looking for the most powerful external radiation I could get, combined a powerful drug campaign at the same time...I needed blanking results, at least stacked in my favor...my stats/numbers were awesome enough. Anyway there are more options than most people are aware of on PCa. Internal radiations Brachy seeds either removable type (temporary HDR),or permanent in conjunction with radiations (brachy+ IMRT)even has different protocols to choose from even from within each on of those. Lots of choices out there with decent results it appears.

Do you know about Neutron combined with Photon, 2- machines used separately to treat PCa and other cancers????? There are maybe two places in the USA that are doing this and 1-2 outside the USA that I heard about. There are probably very few rad-onco docs whom are ready to give this protocol with utmost safety and learning curve would exist too, that may add to the mix, besides machinery costs and maintenance on them.

Here is the treatment basically I got: 10-sessions of Neutron exposures (multiple angles, might have been 8-10 I forget now) followed by 20-24 sessions (cannot remember now exactly) of IMRT-photon (mulitple angles). You do 5 days a week and rest up on weekends and come back and do it all again. The reasoning is that you don't want to much radiation given at any one time so as to avoid damage otherwise. IMRT's machine are great stuff compared to the older EBRT machines, Intensity Modulated Radio Therapy: means they can control delivery, depth levels, amount of exposure, and with accuracy(Dosemetrics I think is the lingo for exposure amounts given per session and locations) and newer machines have targeting equipment that can compensate even for when you breath as the gland may move. You can get various levels of radiations, there is a limit to what is considered safe maximum total radiation exposure levels, I also asked for and was told I would get such level.

There are alot of various radiation treatments, all can be decent, all could have side effects that need to be disclosed to the patients up front and candid. But, yes you can have quality of life issues that are important for men to consider also, plus you can radiate beyond the capsule and its perimeter, this is why salvage radiation is sometimes successful. In the old days 30 years+ ago radiation was primitive compared to today and collateral damage was very common, not so much today, of course expertise of whom is doing the proceedure is always a paramount thing in treatments on any method. Nothing is perfect with PCa, so lots of choice, lots of methodologies exist.

With any proceedure, surgery or whatever get to know all you can up front, so atleast you got some kind of informed idea as to what you may be signing up for, suggest you do not put total trust into the docs verbage of how perfect it all its and never has any patients  with complications....yada...yada...yada. Verify what you can they can be biased or only tell you why they are your only salvation....which is not true to begin with. Get outside opinions on your own is always good for you. yeah


 

Post Edited (zufus) : 1/25/2009 8:02:50 PM (GMT-7)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/25/2009 10:14 PM (GMT -6)   

A couple things that are recent about proton news.

Blue Cross has petitioned Medicare and Medicaid to stop treating prostate cancer with proton therapy.  They're basing this request on that fact that Proton is no more effective on prostate cancer than is IMRT.  I believe that this is true, but there is valid argument that proton has less side effects.  Regardless of that, the cost of proton therapy is the most expensive treatment option in prostate cancer for primary treatment modalities.  The claim states that LCA's (least cost alternatives) are equally effective in treating the disease.  This raises some scary points.  Anyway, I posted about this in October.  Herfe is the link I sent here:

http://prostatecancerinfolink.net/2008/10/14/medicare-coverage-for-pbrt-challenged/

Another issue as stated in convenience.  There are only a few centers doing Proton beam.  I am not sure how much youth plays a roll in selecting proton therapy.  I do know that secondary cancers as a result of radiation therapy is more common in younger men.  I don't think modality will matter.

As for advanced cases, or cases where surgery failed, Proton is less used, or used in combination with IMRT.  Proton alone was not an option for me.  I may have faired well with PBRT and IMRT but the side effects would still be there, especially with hormone therapy.

PS: Everything worked for a while after surgery, but HT shut down my sexual function.  I won't know if my adjuvant IMRT was an issue for SE's for several months after I begin intermittent HT.

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 15, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


smilinjack
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/26/2009 12:39 PM (GMT -6)   
Tony...
Thanks for that info. The good and bad of insurance company's. Your right, proton has the same cure rate as surgery and radiation, but it does not have the side effects.

jack
Jack
age 67
DX 7 Jan. 09
psa 4.1
free psa 17%
Gleason 3+3=6
14 cores 1 had cancer 5%
Going to do Proton Beam Therapy


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4183
   Posted 1/26/2009 1:58 PM (GMT -6)   

Dear Jack:

You will most likely be pleased with your choice of proton beam therapy as your treatment.  I did a lot of investigation into that procedure before I made a final decision and I concluded that it was an excellent option for my case and, looking at your early stage disease, it will probably be great for you.

However, I hope you have not totally bought into the buzz about "no side effects".  While it is certainly non-invasive as compared to surgery, you are likely to experience some side effects...perhaps frequency and urgency of urination and ED is also a possibility.  I had extensive conversations with the docs at the University of Florida Proton Center in Jacksonville and they were forthright in telling me that this, while a great treatment, it is not without possible SE's.  I am truly not trying to rain on your parade because I do believe this is an excellent treatment choice, but I hope you will recognize that it's still not a miracle cure...

Shown below, for your info and persepective is a quote from last April's issue of US News wherein there was a nice story on this treatment.

"...But certain doctors—not to mention the occasional patient who has experienced side effects from proton therapy—wonder whether the high-tech allure of protons hasn't outpaced the science. "Because of Internet buzz, the morbidity associated with proton beam therapy is underappreciated," says Anthony Zietman, a radiation oncologist at Mass General who specializes in prostate cancer. Many of his patients, he says, are surprised to learn that proton beam therapy exposes the bladder and rectum to high doses of radiation and does, in fact, carry a significant risk of causing impotence. Although preliminary research has suggested protons may be superior to conventional radiation for prostate cancer, there's a lack of randomized studies (the type doctors consider most rigorous) comparing the two—and standard radiation techniques are improving all the time..."

Good luck!

Tudpock



Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/30/08.

Post Edited (Tudpock18) : 1/26/2009 6:26:07 PM (GMT-7)


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 1/26/2009 3:11 PM (GMT -6)   
smilinjack said...
Tony...
Thanks for that info. The good and bad of insurance company's. Your right, proton has the same cure rate as surgery and radiation, but it does not have the side effects.

jack


I have to agree with Tudpock although proton is a very good treatment and those who have had it done seem to be happy with it
doesn't mean there aren't ever any side effects. Your still dealing with radiation. Now if you want to talk about the least amount of side
effects it appears to be my treatment which is still a clinical study. The only side effect was a little ED that according to my doctor needed
a little "kick start" from that little blue pill. That seems to have done the job with my old form (literally) returning more and more by day.
Not to mention that I may be the only one here post treatment who still has wet orgasms. That said I wish you good luck but I would try to
talk to others who have had proton for their results, than just listen to the doctors estimates.
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A
 
2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study
 
4/22/08 - TFT performed at University of Colorado Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal
 
7/30/08 - Psa: .32
11/10/08 - Psa.62 - Not unexpected bounce after the 80% drop the quarter earlier. Along with urine flow readings, an acceptable amount left in bladder measured by sonic. Results warrant skipping third quarter tests, and to return April, 2009 for final biopsy scheduled to
complete clinical research study 
 
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/26/2009 3:33 PM (GMT -6)   

I do agree with the followup posters.  The key word is MOST don't have SE's with radiation.  It is sometimes misleading to suggest there are no SE's The link below shows reduced secondary cancers, not elimination of them.  In addition, there is no clinical evidence that PBRT is as effective as surgery in advanced and high risk cases.  But it is an excellent choice for many.  I have a dear friend who went to Loma Linda at the same tme I was at the City of Hope.  We are both enjoying good days right now.  Unfortunately, my case was more advanced, but I am happy with the results so far.

PBRT and Secondary cancers

Tony

Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 1/26/2009 4:19 PM (GMT -6)   

I've noticed there isn't a lot of discussion on Proton Beam either.

I've read Catalona's view on Proton http://www.drcatalona.com/quest/quest_winter08_3.htm

What I don't understand is the argument that if surgery is performed and there is a recurrance you have the option of radiation...But why not just do radiation first then?

 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/26/2009 4:36 PM (GMT -6)   
It can be done that way and is, why can't someone just to drug therapies and get good results, they can and they do, why can some folks do watchful waiting successfully (their stats and parameters are towards indolent PCa)it is done with some. The is no one or two methods to tackle PCa, there are two methods perhaps that are most well known, most well trained for, and therefore the most common, that have longer track records.
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/26/2009 4:44 PM (GMT -6)   

Hi Squirm ~ great link.

There are a few reasons why surgery is good as a first option.  Surgery is the quickest way to get cancer out of the body, it also delivers a more definitive pathology report, it's more cost effective (especially over very expensive PBRT), it is performed in almost every city in the coutry, and has no risk of secondary cancers that radiation can cause.  In addition for the majority of guys that return to a normal life after surgery, they have less occurances of ED and incontinance down the road a ways.  The down side of surgery is the ED and inctinence issues you can read about.  Also there are studies that show that when PCa becomes resistent to hormonal therapies, it is usually in still present prostate tissue first.  RT does have side effects.  It just takes longer to see them and they tend to be irreversible.  Most doctors will not attempt to work in the area that was radiated if the need should arise in the future.  For example, if someone acquires a secondary cancer in the bladder or rectum, surgical procedures could be tossed out, and in those cancers that could be a real issue.

For me, the use of radiation was mapped differently that if it would have been my primary treatment.  But I am glad I had the option to hit the area that surgery proved had been invaded. 

Tony


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 1/26/2009 6:03 PM (GMT -6)   
Smilin;
 
Some of the previous posts might possibly explain why some of us who have had proton don't do much posting in regards to it.  Just my opinion.
 
Dutch
Diagnosed Feb 2001  (Age 65)  Currently 73
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - 2001 - No side effects.  My journey is at: http://www.healingwell.com/community/default.aspx?f=35&m=727565
7yr PSA - 0.2
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 1/26/2009 6:46 PM (GMT -6)   
I finished Proton at U of Florida Center in Jacksonville in July 08. my story is on my website. I have side affects as do others but I am not sure many escape PCa without some type of side affect. Life is better than death. Some had me more advanced than current test indicate. I have no regrets that I chose Proton. I will have my 6 month PSA later this week.

I will discuss my/our situation with anyone who needs support in their battle against PCa.

Richard
aka Smilingoldcoot
Biopsy 1998 = Neg Bio 2000 = Neg with PIN Bio 1/10/08 Gleason 10, Stage T1C 8 of 12 samples positive all < Than 5%
Bone Scan, CTs and MRI Negative early 2008
March 2008 MD Anderson - No Surgery or Proton = No Action
Feb & Mar PET (Possilbe Lymph Node Involvement  & Prostacint Scan Negative
March 2008 U of Florida Proton Therapty Lupron & Casodek May 08 for 2 years
Completed 25 IMRT and 17 PBRT U of Florida Proton Therapy Institute 7/24/08
Latest CT June 08) showed no trace of tumor in lymph node area
7/24/2008 PSA .21, free PSA .08, Percent free PSA 38.1, testosterone 14.6
8/1/2008 2nd Lupon Shot -- 10/27/2008 PSA <.1 -- 12/9/2008 3rd Lupon Shot
12/11/08 MRI Suspicious for Metastic disease L5 & S1 -- Bone Scan 12/19/08 Indicates No Bone Mets
Our Journey is on WWW.GLEASONSCORE10.COM


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/26/2009 8:29 PM (GMT -6)   

Dutch, and Smiling (Richard),
Your posts are valuable and most welcome.  People are attached to their treatments and rightfully so.  And since surgery is the most common treatment option, we don't have a shortage of mentors.  I would like to see some more proton, and other treatment modalities represented as well.  So please post as often as you can.

Perhaps you guys can update your journey?   I am getting ready to update my videos thread and add HealingWell members as part of a reference to new members. 

Tony

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, July 22, 2018 11:44 AM (GMT -6)
There are a total of 2,984,198 posts in 327,195 threads.
View Active Threads


Who's Online
This forum has 161980 registered members. Please welcome our newest member, PSA5000.
402 Guest(s), 2 Registered Member(s) are currently online.  Details
Ides, delisa