A PROTON RADIATION EXPERIENCE

 
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Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 385
 		   Posted 2/13/2007 11:05 PM (GMT -6)   
Let me begin by saying that this journey, as well as all of our other bumps in the road, was shared with my wife of now 46 yr.  She is my lover, partner, friend and most importantly, at the time of my Pca discovery, she became my secretary.  She did the bulk of the interenet research, took notes at all consultations, made the phone calls and appointments, generally kept all the records organized and kept us focused on the job of beating the Pca.
 
My yearly physical in Febr. 2001 gave me the news that my PSA was a "little" high per my GP - PSA 4.8 and "free" PSA 19%.  I was referred to a urologist who felt an area of firmness on the left side, so a biopsy was scheduled.  Two of 12 cores showed cancer - both came from the area where the firmness was found.  Gleason was 3 + 3 = 6 on each and stage was T2b.
 
The urologist who was a surgeon gave us all the particulars on his surgery, sent us to a second surgeon for opinion and told us to try to make a decision within 6 mo.  We consulted with a radiation oncologist who did both external radiation and/or seeds and had a meeting with a doctor at Loma Linda about proton.  We scoured the web for any and all info we could find on all procedures and then made a chart with all the pros and cons of each.  We knew that whatever intervention we chose would have an impact on our lives and that once done, we would have to accept and live with the effects. 
 
Our choice was proton radiation - I had been told that my cancer had been caught early, so chances of cure with any modality were very good and at my age (65 yr) I was more interested in quality of life than quantity.  My treatment was to begin mid May, but on Easter Sunday I had a heart attack and needed a stent implanted - rehab followed.  With my rescheduled date in mid June 2001 and a day after finishing rehab I began treatment at Loma Linda.
 
You begin with a consultation with your doctor - he does his own DRE, PSA and any other tests he feels are needed.  Next you make your bed so to speak, the one you will be lying in for the next 8 weeks - it is called a pod.  It begins with something that looks like a large PVC pipe cut in half.  They lay thin styrofoam sheet over this, you lie down in it and then they pour a warm liquid underneath the styrofoam - it hardens into a custom-fit body mold.  A CAT scan is made while in the pod.  The scan determines the exact placement and shape of your prostate.  From this a bolus is made out of jewelers wax that will be inserted into the machine and the bolus will allow the machine to shape the proton beam to the exact shape and volume of your prostate.
 
Treatments are done daily, Mon. thru Fri. with no treatments on weekends.  Just before your appointed time you are to drink about 16 oz of water, change into a hospital gown, go to your assigned gantry (these are the rooms where the beam is given), get into your pod, a technician inserts a plastic tube with a small balloon at the end into your rectum and fills it with warm water (this is to move the rectum and bladder away from the prostate), a low energy Xray is done to ensure you are in the proper position, all of your info is inserted into the machine and the treatment is given.  The whole procedure takes about 20 minutes and actual beam time is less than a minute.  The proton beam travels at 2/3 the speed of light so it is doing minimal damage to tissue along the way (the damaged cells repair in 6 hr) and the bulk of the energy (known as the Bragg Peak) is deposited into the prostate (remember the bolus) and THERE IS NO EXIT beam.  Treatments are given horizontally at the hip - right hip one day, then left the next, etc. 
 
All the rest of the day is yours to do as you want - exercise is highly encouraged and they provide access to the first class University recreation center free of charge to prostate patients.  You meet with your doctor once a week and sooner if you have any concerns.
 
Some of the side effects that could arise while going through treatment are:  slight sunburn to hip areas where beam enters, allergic reaction to latex of balloons, diarrhea and fatigue.  I had none of these during my treatment and heard very little complaint from others about any of them.  Sexual activity can be continued during treatment.
 
My treatments were over mid August 2001.  I have had no incontinence.  As for ED - I had been having a slight problem off and on with ED for a number of years  caused by medications.  I have not noticed any change after proton, so I can only assume that proton did not have any effect so far.  We were asked to have our PSA checked every 6 months for the first 5 yr and mine has steadily dropped to it's current 0.2.
 
I want to make two points about the importance of EDUCATION, EDUCATION, EDUCATION!!
Even though Pca is called the "silent" disease, there are "red flags" that appear.  I had two of them.
 
   FAMILY HISTORY  -  both of my brothers had Pca, so I was about 3x as likely to have it.
 
   TRACKING YOUR PSA  -  No longer can we rely on 4.0 as the magic number. It is important to get a base PSA and then do your own tracking.  It was any jump of 0.75 or more between testings, but now the NCCN says any jump of 0.5 needs to be looked at.  I have PSA records back several years and in checking found that my cancer probably began in 1999 when I had a jump from 2.3 to 3.4.
 
I hope the above will be informative to anyone who might be interested in proton and I will try to answer any questions you have.
 
Dutch
 
10-09    8yr PSA - 0.2   No side effects to date.  ED is a problem from time to time, but my age and medications also contribute to this - Viagra works good.

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. 
 
 
 

Post Edited (Dutch) : 12/19/2009 6:49:58 PM (GMT-7)
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pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 443
 		   Posted 2/14/2007 9:20 PM (GMT -6)   
Dutch

congratulations on telling your "proton" story at long last. i see that bluebird was after you! we "proton" guys can't seem to get much attention here, but it is a great message board notwithstanding. with so many proton centers opening up, i think we will eventually get our due as more PC patients will be attracted to proton therapy. obviously, proton is not for everyone. i think it has been a carefully hidden secret for far too long. i am here to help in any way i can no matter what treatment option the members decide on--we all need help in one way or another. i am starting my proton treatment at MGH on 2/22/07. I would have liked the loma linda experience, but it was not practical to travel that far. moreover, i have family close to MGH that i am staying with. all the best to you. you have been a graduate of loma linda for 5 1/2 years and have a rock bottom PSA--keep it there! continued good luck!

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.

Post Edited (pcdave) : 2/14/2007 7:25:41 PM (GMT-7)
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Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 385
 		   Posted 2/14/2007 9:49 PM (GMT -6)   
Pcdave:
 
Best of luck to you.  You should try to contact Bob Marckini while you are a MGH.  He lives near Boston.  You can get his contact info on the protonbob site.
 
Look forward to hearing how they do it at MGH.
 
Dutch
Diagnosed Feb 2001  (Age 65)
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.
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pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 443
 		   Posted 2/14/2007 10:08 PM (GMT -6)   
Dutch

I have been in contact with Bob Marckini via e-mail, especially about his book which I have read and recommend. i wish i had the book on day one when i was diagnosed--it would have given me a quick head start on my exhaustive research. I also have another mentor from Proton Bob that completed his proton therapy at MGH last summer. he has been a great mentor to me. i hope to meet both of them for lunch or dinner while i am in boston. thanks for your good wishes. cheers!

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.
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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2520
 		   Posted 2/15/2007 1:44 AM (GMT -6)   

Dutch  &  Loved Ones,

       Thank you so much for ~

 

Caring Enough to Share

Knowledge is Power

Thank you for sharing “Your Journey”  (Knowledge)

and helping “all of us” to gain the “Power” to (take away the fear!)

 

 

           A   “Special”  Warm Welcome  to  You!

 

 

This is truly a great forum!!! ~ You have joined! You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey.

 

 

KNOWLEDGE IS POWER... and POWER conquers fear

 

Without knowledge of what we are up against…. There is no power…. only fear.

Your experience will help all of us now and in the future.  The ultimate goal is to be prostate cancer free.  We don’t all reach this goal as planned ~ so we will need to continue reaching out as far as we have to ~  and the sharing of as many journeys on this forum is vitally important.  Knowing the different options that are available will help guide all of us to the right treatment when/if we have to start looking for other options.  Plan B…

 

This forum is filled with powerful information.  This is the first step in researching the options that are out there.  With folks like John *jeb187chs, Bill *Jetguy, JustJulie, Dave *pcdave, and many more…. You are all broadening our scope and continue to take away the fear by sharing.

 

This journey with prostate cancer is best traveled with friends…. We’re glad you became our friend… 

 

Our thoughts and prayers are with you.

In Friendship ~ Lee & Buddy

 

“God Bless You”

 

It's a little prayer  ~  "God Bless You"

...but it means so much each day,

It means may angels guard you

and guide you on your way.

 

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Helpful Hints for New Members... Hope this helps you! :) Updated 02-05-2007

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

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)
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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2520
 		   Posted 2/15/2007 1:48 AM (GMT -6)   

Hi ~Dutch,

 

WOW!!!  Thank you for this wonderful gift.  Excellent Thread…. I like the title!!!  tongue  

 

You did it right…. Just like us!!!   yeah  

 

Excerpt from “Our Journey”…

Prostate cancer... is an “US / WE” disease and must be treated as an “US / WE” Journey.  Make this a “team” journey…. Do everything together.  You will need each other and each other’s strength!   :-)  

 

“Hand-in Hand” “Heart-to Heart”

nice words borrowed from Tim G…

 

 

Keeping you close in thoughts and prayers,

In Friendship ~ Lee & Buddy

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

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)
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Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 385
 		   Posted 3/19/2007 3:58 PM (GMT -6)   
Bumped to the top for Pete42.
 
Dutch
Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.
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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2520
 		   Posted 6/25/2007 9:08 PM (GMT -6)   

  :-)    Welcome ~ Dutch-ESS,     (nice play on name here!! )

 

Your 1st posting is definitely on the mark!!! It truly is a “couples disease”.

We wanted to send a special Welcome… and let you know we are so happy to meet you!!!  yeah

Keeping you and Dutch close in our thoughts and prayers.

In Friendship ~ Lee & Buddy

 

Quote from Posting to Maria Help, my husband is avoiding following up on the abnormal PSA and DRE

 

My first post - Dutch's wife.  Maria, your husband may not have any symptoms, but he has two very large "red flags" - the PSA that appears to have doubled in the last year and DRE that indicates a prostate that does not feel "normal" to the urologist.  You didn't mention how he came to get the PSA to begin with (yrly physical, other problem, etc.), but apparently he does go to the doctor on his own.

Now I am sure there is some of the fear factor involved, but I think you have to explain to him that early detection gives a better than average chance of a cure and that by not doing anything he is putting both himself and your family in jeopardy.  This is truly a "couples disease" and the outcome will definitely affect you as well as him.  Let him know you will be with him every step of the way, but he has to act now.  If it were me and there was no response, I would make the appointment!!!

Good luck and report back to us.

Dutch-ESS

 
 
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veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
 		   Posted 6/25/2007 9:40 PM (GMT -6)   
What a wonderful recounting,

You have so much knowledge and a great way of presenting it. I'm sure all who read your journey will come away well-informed and inspired. I know I did.
I too (father) have a family history of PCa.
Thanks for bringing the strong heredity aspect of this disease.
Education! Indeed.

All Good Thoughts to
You and Your Wife,

Vet
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TC-LasVegas
Forum Moderator


Date Joined Dec 2006
Total Posts : 3761
 		   Posted 4/13/2008 9:48 PM (GMT -6)   
Hi Dutch,
I saw you just post your signature and thought about taking a trip back in time. I wasn't very high on Proton at one point, but I know you have done great and your story is better near the top than buried back where it was so I'm bumping it. Proton has it's place in treatment, no doubt about it. More people need to see your trek. You listed your thread in your post for signatures and I think a better place for that thread is in your signature. Wishing you well. Stay well...

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator
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Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 385
 		   Posted 4/14/2008 4:33 PM (GMT -6)   

Thanks Tony:

Don't post as often as before, but always reading the posts.  Took your advice and added my thread to signature - hope it comes out right.  Been following your journey and, as usual, your great attitude so impresses me.  All the best to you.

Dutch

Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 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. 
 
 
 
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smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 332
 		   Posted 4/14/2008 8:29 PM (GMT -6)   
Dutch
 
Thanks to you and many guys like you for spreading the Proton treatment story.  I am waiting a call this week to go back to Jacksonville for my 3 day workup at the U of Florida Proton Therapy Institute.  It has been a frustrating 3 months with many test which all have turned out good.  I will continue to spread the Proton story via Richard Journey here on HW as well as the protoninfo forum on Yahoo.
 
Again, Thanks
 
Richard  yeah yeah yeah yeah
Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Neg Bios 1997 & 2000 PSA within considered normal range
11/06 PSA 1.9 PSA 11/07 was 4.9 PSA 12/07 was 7.7 MDA 2/12/08 3.3 On Proscar so shud be doubled
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
Bone scan 1/17/08 hot spot on ribs, CT shows rib enjury CT CHest 1/30/08 Clear
M.D. Anderson 2/12/08 Gleason 9 - CT Abdomin & Pelvis Clear Recommended Hormone&Radiation
2/19/08 Dr Fagin, Austin, TX did not recommend surgery based on medical history
2/22/08 Contacted U of Florida Proton Therapy Institute - Appt 3/13/08 
3/24/08 PET Scan await results - 4/1/08 Prostascint Scan await results
Preliminary appt UFPTI for 3 day workup 4/14/08 or 4/21/08 depending on when last Scan available
Turn Stumbling Blocks into Steping Stones and Keep Smiling
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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2520
 		   Posted 4/14/2008 8:40 PM (GMT -6)   
  :-)   cool Hey ~ Dutch & Dutchess.... & our other Guys & Gals,
I have happy tears as I see what was just posted! and re-reading this powerful journey.  Thank you!!!  yeah This is what HealingWell is all about.
 

You’ve just been HUGGED by  *bluebird

( Lee, Buddy & Murphy too! )

 

Just wanted you to know!!!  You are great for HealingWell.com  tongue

Thank you for you!!

Keeping you all close ~

In Friendship ~ Lee & Buddy
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Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 385
 		   Posted 12/19/2009 8:54 PM (GMT -6)   
Hi Guys:
Haven't been around for a while and just wanted to update my current PSA after 8yr.  Sorry, didn't know it would bump to the top when editing.  Best wishes to all.
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
8yr PSA - 0.2
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 
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lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 272
 		   Posted 12/20/2009 8:37 AM (GMT -6)   
Dutch,
Thanks for sharing your proton Story. My dad was treated at Loma Linda back in 1996 or 1997 and still doing Ok today. I actually looked into Proton for my own treatment but my insurance would not cover it so I opted for Davinci instead. Please don't take my next comments wrong but not every thing is peachy cream rosy with Proton treatments as some think. For my father about 3-5 years after Proton he lost the ability to have erections. Was this from the Proton or other factors? Of course no one knows for sure but he has been told and I was told directly from speaking to Loma Linda that this can happen following Proton treatments as the scar tissue forms etc from the treatments. Also a friend from Church had treatments with Proton 2-3 years ago. He has had treatments since for Bladder cancer (Again he was told this is common following proton treatments) and has had to have the TURP done 3 times from scar tissue. Again I mean no disrespect for those that have gone with Proton but it can and does have problems associated with it just like Surgery, or other treatments.

Best wishes to you as you continue with your journey against prostate Cancer.

Larry

Age 55 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
Final Path report:
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0

Post Edited (lewvino) : 12/20/2009 6:40:17 AM (GMT-7)
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Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 121
 		   Posted 12/20/2009 10:35 AM (GMT -6)   
Dutch, Thanks for sharing your 8 year success story. I do have a question about PSA anxiety. Does anxiety diminish with time? Does PSA become just a routine test after a few years? I am only a year and a half out from treatment and don't do well with things over which I have no control.

Again, thanks for sharing.

Carlos
Diagnosed 2/2008 at age 71, PSA 9.1, Gleason 8 (5+3)and stage T1c.  CT and bone scan neg.
Robotic surgery 5/2008, nerves spared, bladder neck spared with pelvic floor reconstruction.
All margins, SV and lymph nodes were neg. 
Staged pT2c, Gleason sum 8 (5+3).
Continent at 6 weeks. 
PSA <0.1 at 18 months, Nov. 2009.
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Purgatory
Veteran Member


Date Joined Oct 2008
Total Posts : 7318
 		   Posted 12/20/2009 12:41 PM (GMT -6)   
Hello Dutch,

Glad you are doing so well after 8 years. In our world 8 years sounds pretty good. Plus your rare Proton treatment story
adds good info and a new element to treatment choices talked about here.

May you have many more years like these.

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
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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2520
 		   Posted 7/3/2010 9:41 AM (GMT -6)   
tongue  

Posting copied from Woo-Hoo thread started by IdahoSurvivor 6-29-2010

 

Bluebird:

I haven't posted frequently but do check in from time to time.  Sure happy to see your post today and glad to see all is going well for you and yours.  I am at 9yrs with PSA of 0.2 and life is good.

 

Dutch

 

Hey Dutch and Dutchess,

 

Thank you for your kind words and thoughts.   You’ve just put a smile  tongue on our faces with your stats too!!!  Please remember ~ to update your thread because 9 years!!!!! is a HUGE STEPPING-STONE to be on ~  in this journey.  And it’s good that it bumps to the top!!! Especially when there are others reading and their stones are wobbling.  Your journey is a powerful journey to grasp on to. 

 

Isn’t it wonderful to see the continued bonds that build each day with new members finding

HealingWell.

As time continues to move forward many of us move forward and that’s okay.  Each period of time finds a special group that bonds and after a time they will come to realize that even for the members who have moved on….. the thoughts and prayers continue to surround them.

A SPECIAL BOND that lasts a lifetime has been made here.

Life is Good

In friendship ~

 *bluebird  ~ Lee, Buddy, & Murphy from North Carolina

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

April 3, 2006  Radical Retropubic Prostatectomy

4 Years ~ 8th PSA April 2010 ~  less than 0.1 NON-DETECTABLE

 
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bluemoon42
New Member


Date Joined Jul 2010
Total Posts : 2
 		   Posted 7/30/2010 5:26 AM (GMT -6)   
I completed proton at Shands, Jacsonville last Oct 15. In late May, I started experiencing rectal bleeding. It icreased to 8-12 time a day. Shands indicates that this may occur in 20% of cases. Has anyone else had this experience. All reports that I see talk about one occurence per month!
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