Why I chose radiation

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jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 2/10/2007 8:23 AM (GMT -7)   
There seems to be more interest in radiation recently and since I seem to be the only guy doing EBRT (External Beam Radiation Therapy), I thought I'd let you know why.  If you have read any of my other posts, you will note that I have been careful not to push my choice of treatment and I don't intend to push it now.  In my thread Radiation - a journey, I have tried to factually describe what happens during my treatment and leave my emotions and opinions out of it.  That is the what and how and I hope this will describe the why.  I'm writing this because so many of the guys and gals have done such a good job explaining why they chose their treatments.  I thank all of you and you can believe that I read them carefully.  I came to this site before I knew that I had cancer, so everything written was very important to me.
 
I am not a medical person and what follows is my opinion only.  You can bet that many of my fears and circumstances have no application to you.  I most certainly am not a medical expert and I wouldn't bet the ranch on my 'knowledge' - or should I say lack of knowledge.
 
I trust my urologist a great deal.  Another doctor whom I have known for nearly 20 years told me that my uro is (in his opinion) the best in Dallas.  Much of what I say here is based on what my urologist has told me. 
 
The list that follows consists of the treatments I considered.  I have listed them in the order that I rejected them.
 
Surgery
 
At present, surgery is considered the gold standard.  My urologist had RRP 10 years ago and given my general good health, it's what he recommended for me.  He also told me that with my numbers, radiation would offer just as good a cure rate.  He said that I had a 98% chance of a cure whether I chose surgery, or radiation.  I abhor the thought of surgery.  It is my goal in life to never have any sawbones cut into my tender, pink body.  I personally know people who have had their throats damaged, have had serious infections, and have died from surgical complications.  I know of a couple of guys who have had very long and painful recoveries from prostate surgery.  I know that surgery sometimes fails even when they think they got it all.  A close friend of mine died that way about three years ago.  With prostate cancer, the only thing for sure, is that nothing is for sure.  The side effects are well known.
 
HIFU  High Intensity Focused Ultrasound
 
This is very appealling.  Essentially, the cancer is burned up.  It's usually done in one session and if it fails, later surgery is no big deal according to my urologist.  Go to ushifu.com for more info.  I very likely would have chosen this if it were available in the U.S., if insurance would pay for it, and if I could find an experienced person to do it.  I even talked on the phone to a couple of people at USHIFU, but in the end dicided to stay in the States and let my insurance pay for it.  I have no knowledge of side effects, except that they are said to be minimal.
 
Radiation
 
3D - Conformal
 
It's 2007 and by now this ancient history.  I would not consider it.  Too much collateral damage.
 
IMRT  Intensity Modulated Radiation Therapy
 
Google IMRT - lots of info.  You can read technical descriptions elsewhere, but the idea of this vs. 3D - Conformal is fewer side effects and I think it is much better.  A sumulation is done (much like the one I described in Radiation - a journey) and the treatments are based on that.  This is a huge leap forward, but doesn't account for daily movement of the prostate and it therefore lacks accuracy on a daily basis.  Once I learned of Proton Beam and IGRT I didn't do much research on side effects, so I will refrain from comment.  If I lived in a place where my best choices were this and surgery, I don't know for certain what I would do.  I would reluctantly choose IMRT - I think.  Unless there was a local surgeon who had a ton of experience and was super skillful.  Maybe.  You get the picture. 
 
Proton Beam Radiation
 
I eliminated proton beam simply because it's not here in Dallas.  I think that it's just slightly better than IGRT.  The reality is that we are taking care of our grandson five days a week and the logistics of going to Houston, or Loma Linda were going to be very challenging.  I know three guys who have done this and they are thrilled with the results.  Please understand that this is radiation.  Protons are sub atomic particles and they do penetrate your body.  It's that most of the energy is in the Bragg peak and that is flattened to do useful work in a specific area.  The only side effect that I am aware of is some instance of loose bowel that resolves itsself over time. There may be more, but I am not aware of them. There will never be many proton beam facilities around.  It's my understanding that the new one at M.D. Anderson in Houston cost about 125 million bucks.  That ain't pocket change.  The latest and greatest IGRT comes in at well under 5 million. 
 
IGRT  Image Guided Radiation Therapy
 
Basically, this is IMRT with daily location of the prostate.  I had markers implanted because my oncologist uses x-rays to locate my prostate each day.  Some use ultrasound on the abdomen and some use CT scans.  I idea is to kill the cancer with minimal collateral damage to surrounding tissues.  It's my understanding that there are few urinary complications with this treatment, but there may be some bowel problems that usually, but not always resove over time.  A friend of mine still has a loose bowel three years after his treatment.  When he feels the urge to go, he needs to think about finding a bathroom.  In rare instances there can be severe complications.  It's my understanding that there is nearly a 50% chance of impotence within 18 months of treatment.  But if you're vertical and on this side of the grass, you won.
 
Note:  It is incorrect that salvage surgery can not be done if radiation fails.  It may be difficult and not all surgeons do it, but it is possible.
Summary
 
Well, that's why I have gone down my particular road.  I hope you find my experience useful. Nothing is for sure, but I am happy and confident with my decision.   Be advised that any numbers you read regarding survival rates and cure rates and side effects that include anything other than IGRT is comparing apples to elephants. 
 
Regards,
 
Bill
 
 
Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/10/2007 9:44 AM (GMT -7)   

Healingwell Forum…is all about Sharing because we Care….. 

 

Partial Quote from Bill *Our Jetguy!

It is very difficult for me to express myself in a public manner such as this.  On the other hand, I have learned much from all of you who have the courage to express yourselves here. 

 

Partial Quote from Bill *Our Jetguy!

There seems to be more interest in radiation recently…

 

 

Bill ~ *Our Jetguy!! ***** 3314 plus views!!

 

Each time you post… I learn more and more about you… and it truly makes me smile! :-)

And to think it all started ….with the following Thread:  The hardest thing for me....

I truly give thanks that this Thread touched you Bill. 

We have never been the same since you joined Healingwell. 

 

You and JustJulie (and others) continue to share your Knowledge with all of us.  Many of us never even thinking about radiation… because of the fear!!!  And with your sharing ~ it truly does take some of the fear away!!! And as time goes by…. More and more of that fear subsides.  Knowledge is Power…. and Power takes away the fear.  Thank you!!!!!

 

                                   Caring is Sharing   yeah   

Thank you for caring about all of us and for caring about future members!!!

Amazing isn’t it!!!!!  With over  3314+ views to Jetguy’s (Page, Journey/Synopsis, & Reasons for choosing)…. 

This is a huge WOW!!!!

 

Thank you again for your valuable Threads and Postings on this forum…

Are we ever glad you didn’t listen to yourself in the quote above!!!!!!!!! 

You are like the Lion on the Wizard of OZ……  You didn’t think you had the courage to express yourself….

and come to find out.... Your courage was always there. 

 

You are very special to all of us!!!!

In Friendship ~ Lee & Buddy

 

Other threads by Jetguy…

 

(direct link ~ just click on the title!  Reminder to click on the REFRESH icon once there)

Jetguy's Page... Welcome Friend :)

Radiation - a journey  


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

June 29th ~ PSA Less than 0.1 Non-detectable

Post Edited (bluebird) : 2/10/2007 1:50:12 PM (GMT-7)


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 2/10/2007 10:31 AM (GMT -7)   
Thanks Bill! How wonderful that so many are posting these information pieces. We didn't find this site until about 3 weeks post surgery (laproscopic), but can only imagine being newly diagnosed and having a wealth of information, opinions, and experiences at our finger tips.

Good luck with the rest of your journey! For someone who didn't think he had much to say at first you are certainly a well versed individual with tons of valuable information and supportive comments.

;o) Linda & Bob
Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER!  Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more agressive, previously undetected cancer)      PSA UNDETECTABLE.   Next PSA check Feb 27, 2007.
 
Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us.


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 2/17/2007 7:31 AM (GMT -7)   
This is going to the top so Trey can read it.

Bill
Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 3/25/2007 3:21 PM (GMT -7)   
To top for Puget. Hope it helps.
Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!
Began IGRT January 23, 2007. 


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 3/28/2007 10:28 PM (GMT -7)   
Jetguy, I"ve been out of town for a few days and just now got a chance to read your post on radiation. Thanks a lot. I can't believe how generous you all are in sharing your experiences -- and fears and hopes. I can read technical articles til I'm blue in the face, but the personal stories you all tell are incredibly comforting, even if there isn't always good news. Knowing that I'm not the only one who ever has or will go through this is strangely comforting. I still get so frustrated and, to be honest, darn mad, that there isn't a treatment that leaves you "whole," minus the PC! I don't want to suffer through either incontinence or impotence. I guess I'm still in the denial, anger stage. More education needed . . . I also need a good long talk with my urologist. Question: I only had 10 samples taken for biopsy. If I'm considering radiation, is it advisable to request additional samples or MRI to get a better pciture of the health of the prostate as a whole? Seems to me that 10 samples leaves a lot of tissue unknown. If the cancer is more widespread, perhaps I should consider surgery, rather than radiation. On the other hand, someone advised today that the issue is less one of the number of positive samples than whether the cancer is contained with no involvement of the seminal vesicles and lymph nodes. More questions for the MD, I guess. Thanks again, Jetguy. Journey continues . . . Bless you all.

puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 3/28/2007 10:31 PM (GMT -7)   
Jetguy, I"ve been out of town for a few days and just now got a chance to read your post on radiation. Thanks a lot. I can't believe how generous you all are in sharing your experiences -- and fears and hopes. I can read technical articles til I'm blue in the face, but the personal stories you all tell are incredibly comforting, even if there isn't always good news. Knowing that I'm not the only one who ever has or will go through this is strangely comforting. I still get so frustrated and, to be honest, darn mad, that there isn't a treatment that leaves you "whole," minus the PC! I don't want to suffer through either incontinence or impotence. I guess I'm still in the denial, anger stage. More education needed . . . I also need a good long talk with my urologist. Question: I only had 10 samples taken for biopsy. If I'm considering radiation, is it advisable to request additional samples or MRI to get a better pciture of the health of the prostate as a whole? Seems to me that 10 samples leaves a lot of tissue unknown. If the cancer is more widespread, perhaps I should consider surgery, rather than radiation. On the other hand, someone advised today that the issue is less one of the number of positive samples than whether the cancer is contained with no involvement of the seminal vesicles and lymph nodes. More questions for the MD, I guess. Thanks again, Jetguy. Journey continues . . . Bless you all.
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