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A PROTON RADIATION EXPERIENCE

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Prostate Cancer
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Dutch
Regular Member
Joined : Feb 2007
Posts : 400
Posted 2/13/2007 8:05 PM (GMT -8)
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

07-11 10 yr  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.

Post Edited (Dutch) : 7/15/2011 8:55:22 PM (GMT-6)

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pcdave
Regular Member
Joined : Oct 2006
Posts : 444
Posted 2/14/2007 6:20 PM (GMT -8)
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
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Dutch
Regular Member
Joined : Feb 2007
Posts : 400
Posted 2/14/2007 6:49 PM (GMT -8)
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

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pcdave
Regular Member
Joined : Oct 2006
Posts : 444
Posted 2/14/2007 7:08 PM (GMT -8)
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
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 2/14/2007 10:44 PM (GMT -8)
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
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 2/14/2007 10:48 PM (GMT -8)
Hi ~Dutch,   WOW!!!   Thank you for this wonderful gift.   Excellent Thread…. I like the title!!!      You did it right…. Just like us!!!        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
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Dutch
Regular Member
Joined : Feb 2007
Posts : 400
Posted 3/19/2007 12:58 PM (GMT -8)
Bumped to the top for Pete42.

Dutch

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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 6/25/2007 6:08 PM (GMT -8)
     Welcome ~ Dutch-ESS,     (nice play on name here!! )   Your 1 st 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!!!   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
Joined : May 2007
Posts : 133
Posted 6/25/2007 6:40 PM (GMT -8)
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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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 4/13/2008 6:48 PM (GMT -8)
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
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Dutch
Regular Member
Joined : Feb 2007
Posts : 400
Posted 4/14/2008 1:33 PM (GMT -8)

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

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smilingoldcoot
Regular Member
Joined : Jan 2008
Posts : 338
Posted 4/14/2008 5:29 PM (GMT -8)
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

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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 4/14/2008 5:40 PM (GMT -8)
    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!!!  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  Thank you for you!! Keeping you all close ~ In Friendship ~ Lee & Buddy
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Dutch
Regular Member
Joined : Feb 2007
Posts : 400
Posted 12/19/2009 5:54 PM (GMT -8)
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

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lewvino
Regular Member
Joined : Jul 2009
Posts : 384
Posted 12/20/2009 5:37 AM (GMT -8)
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
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Carlos
Regular Member
Joined : Nov 2009
Posts : 486
Posted 12/20/2009 7:35 AM (GMT -8)
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
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 12/20/2009 9:41 AM (GMT -8)
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
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 7/3/2010 6:41 AM (GMT -8)
  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  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 ~
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bluemoon42
New Member
Joined : Jul 2010
Posts : 2
Posted 7/30/2010 2:26 AM (GMT -8)
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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Leroy
Regular Member
Joined : Jan 2009
Posts : 41
Posted 7/6/2011 4:57 AM (GMT -8)
@pcdave and Dutch: I am doing my fitting for my pod on Thursday - how are things for you guys lately? Have looked for recent posts with updates but saw none. Hoping all is well and numbers great! Hard to find proton users on this site.
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SkeeterZX22v
Regular Member
Joined : Apr 2011
Posts : 251
Posted 7/6/2011 9:43 AM (GMT -8)
Dutch, Thanks for your post. If I am fortunate enough to get approved for proton, I will continue your story with my own as to how it "really" is (good or bad).

Leroy, keep us updated on your proton journey as well.

Steve
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Baptista
Regular Member
Joined : Aug 2010
Posts : 85
Posted 7/6/2011 10:40 AM (GMT -8)
Leroy

In prostate cancer no case is equal but similar. I hope your treatment will give you a good outcome similar to Dutch. I am a believer of proton particularly at the newer thinner pencil-beams which gives better accuracy than those at the time of Dutch (2001).
As you say, many reading this thread would like to have an update from the poster.
Hope you will share your experience too.

Take care
Baptista
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Dutch
Regular Member
Joined : Feb 2007
Posts : 400
Posted 7/15/2011 7:04 PM (GMT -8)
Leroy & Steve:

Haven't stopped by this site in quite awhile.  It will be 10 yr in Aug that I completed my proton treatment.  I have not had any problems except for occasional ED - I had already been having this before my proton treatment, it being caused by medications I was taking.  It has not gotten any worse, Viagra works great if needed and it may be that age (76yr) contributes.

Wishing you both the best and think you will both be happy with your choice.

Dutch

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Going for brachy
Regular Member
Joined : Apr 2011
Posts : 259
Posted 7/16/2011 4:50 PM (GMT -8)
Proton therapy is good if everything goes according to plan during the treatment. If the high energy proton beam is misplaced even by a few millimeters, the consequence could be very bad. Whether proton therapy is better than surgery or radiation (photon) theerapy is yet to be established. As someone points out in 20% cases there may be bladder cancer down the road.
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Squirm
Veteran Member
Joined : Sep 2008
Posts : 744
Posted 7/16/2011 5:30 PM (GMT -8)
I'm not sure why the negativity about proton treatment in the last post. Frankly I don't know what is meant by "if the beam is misplaced by a few millimeters". Does that mean if the patient is misplaced by a few millimeters? The structural plates that house the beam? etc. etc. I would imagine designers, manufactures, radiologist and techs etc are all versed in any potential mishaps when designed, constructed and used, and that goes for all therapies. Can the "20% there maybe bladder cancer" can be cited.
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