Rectal Damage From Radiation

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Lucious
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 1/28/2010 4:09 PM (GMT -6)   
I completed radiation treatment Mar 09, gleason 8, continued on hormorne treatment but has had continued rectal damage since then.  I've been told this is rare...am I alone right now.
 
 
LC Dickey

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/28/2010 4:23 PM (GMT -6)   
Welcome LC, to HW. Glad you found us.

I just recently completed Salvage Radiation treatments, 39 sessions, and though its been 2 months now since, still experiencing a lot of rectal area pain. My dr's feel it from the "scattering" effect of radiation even thought I had IMRT. They told me it will just take time to heal.

It is rare, only small percentile of men have that as a continual side effect, what are your doctors telling you?

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: 1/10 .12
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 43 days, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 1/28/2010 5:41 PM (GMT -6)   
Welcome to HW, Lucious. There several guys here who have had rad. and can answer your question. In the meantime, feel welcome and introduce yourself..
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 1/28/2010 6:14 PM (GMT -6)   
I too experienced rectal damage and the doctor told me that it would heal in a few months. That proved to be true, now after 32 months I am fine. I think it probably took 6 months before my rectal pain and bleeding stopped.
I does get better my friend. Welcome to our wonderful forum. Please hang around and participate.

peace to you
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/28/2010 9:30 PM (GMT -6)   
LC,
They are indeed rare cases but I have some in my live support group. I have two EBRT guys in my UsTOO group that suffered some issues. I also have one guy who just had a terrible experience with a seed implant procedure. His issue is sphincter damage and complete incontinence that could not be repaired because of radiation damage. AUS was not an option either. Of the EBRT guys, one guy improved over time and while still not back to pre-treatment rectal function, he is doing well. They other EBRT guy suffered incontinence and uses a clip. This is very rare, but I have to believe that these are all attributable to poor application of the RT programs. I also know of some guys at the VA at a few locations that had terrible experiences with seed implants. This made national headlines and was attributed to inexperienced providers.

Here is the press release on the last one:
www.medscape.com/viewarticle/706366

Tony
Prostate Cancer Forum Co-Moderator


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4277
   Posted 1/28/2010 10:11 PM (GMT -6)   

Lest some of our newer members get frightened about radiation treatment by the last posting, it should be pointed out that most of the seeding problems (92 patients)  occurred in a single location (VA hospital in Philadelphia) by a single radiation oncologist (Gary Kao from Penn).  This was indeed a tragedy especially in that our veterans were the victims. 

Modern brachytherapy done by an experienced radiation oncologist will result in rectal problems only in extremely rare instances.

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 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/28/2010 11:01 PM (GMT -6)   
Tud,
No intention of scaring anybody. The three men in my group did not use the doctor in the article, and lucious likely did not either. But I made it clear that it is rare that radiation delivers the SE's that are extreme. But I also want to point out that SE's from radiation are usually much later in life. Most won't have them but they do happen.

Tony
Prostate Cancer Forum Co-Moderator


Lucious
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 1/28/2010 11:44 PM (GMT -6)   
Thanks everyone for your responses. I am 59 and had this problem for a year. Every other day has been a painful day for me. from spasm, incontrollable bowel movements and bleeding. I was given laser treatment in Nov 09 but didnt help much. I asked the doctor doing a recent check up. Tell me exactly whats going on with my bowels. I've been told I had hemrhoids, anal fissue, protitus/proctopathy. His response was the radiation shrunk my intestines...so i have all the above...so its going to be with me for awhile

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/29/2010 12:23 AM (GMT -6)   
Did he give you anything, or any suggestions? Just curious about the expectations...

Tony
Prostate Cancer Forum Co-Moderator


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/29/2010 10:08 AM (GMT -6)   
Lucious's bad SE regarding RT, Seeding, and or SRT is important to know and read. I know these are rare, but the point is that they happen to real people, not just stats in a report. I know that several here seem to downplay the SE I went through and still going through post SRT, but I assure you, it is 100% real. From time to time, I think its helpful with real cases like presented here, that there are risks with every type of treatment, while the chances of a person experiencing the negative results or side effects may be ultra slim, the risks are real, and they can reallly effect your quality of life attitude.

I know this first hand, as I had one of my worse days ever yesterday, probably had more than 3 dozens severe level spasms, untold amounts of both rectal and penile pain, hurt so bad that every time I stood up, it would trigger another attack, even the pain meds were oblivious to the pain. I was thankful that I was able to get some broken sleep during the night, as I was afraid to move a muscle once I lay down on my side.

Lucious, I hope you find some relief and some solutions soon to your pain and agony. Some of it just going to take time to heal and recover from, that's what my doctors tell me.

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: 1/10 .12
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 43 days, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 1/31/2010 9:59 PM (GMT -6)   
Hi Lucious,
 
I'm sorry that you are having such bad SE's from the radiation.  I had seed implants and about 13 mos later had several episodes of rectal bleeding, but usually only the first BM in the morning.
 
After informing my rad onco about it, he recommended that I get hyperbaric oxygen treatments at a local hospital.  After 50 two-hour sessions, I did get some relief, but not a cure.  I'm still waiting for the shoe to drop again, but so far, so good.  I take Metamucil (rounded teaspoon twice a day with my bone supplement) and that helps a lot.
 
If you Google "Bob Wall" (I need to check and make sure that it is still searchable), you will find a detailed regimen for treating rectal bleeding.  I did not adopt all of his regimen since my problem was relatively mild.  However, I did try the SEACURE (fish protein in a capsule), but stopped it because I developed gout (have had it before, so the SEACURE was probably not the cause).  I have also been taking 400 IU of Vitamin E and 1500 Mg of Vitamin C daily to help with rectal healing - can't be sure it helps, but I think it does.
 
I'm also on a bone supplement (I'm on Lupron 4 mos dose) called Prosteon available from Therologix.  My uro says its the best supplement for Lupron patients that he knows of. 
 
I don't know if the above will help, but it may be worth checking out.
 
Gene in Md
Age 70.
Dx Dec 07. PSA 8.4. DRE confirmed tumor. Three of six positive. Gleason: 6 (3+3). Seeds Iodine 125 Jan 08. PSA's 3.9, 1.7. Rising PSA's: 2.3, 3.4, 3.9, indicating  seeds not working.  April 09 began Lupron 30 MG ea. 4 mos.  Side effects hot flashes. Aug 09 - PSA 0.5!!!  Lupron working! Aug. 21 - 2nd Lupron shot.  Aug. 31 - began hyperbaric oxygen for rectal bleeding (radiation proctitis).  50 sessions as of Nov. 24 helped. 10 sessions saved in case they are needed later on.  Dec. 9, PSA 0.7.  Onco DRE negative. Says not to worry about 0.2 rise in PSA.  So far, so good. 3rd Lupron shot Dec. 23, 09.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 1/31/2010 10:15 PM (GMT -6)   

I agree with David.  There almost seem to be an attempt to sweep some of these reports under the rug.  I don't know the percentages, but rectal bleeding/damage is not uncommon.  The NEW Prostate Cancer Link has many more posts from guys who have had problems.

We tend to paint radiation as pretty risk free sometimes, and surgery as the one with terrible side effects.  No treatment is risk free.  I am thankful for every man on here who has not had serious side effects, but it does not mean they don't occur.

Goodlife

 


Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/31/2010 10:27 PM (GMT -6)   
Goodlife, and I agree back with your sentiments. Not sure how many brothers here have been through more than one major RT regiment in their lives, but I went through 2 within a 10 year window, and both times they were hell on me, the first one still worse than this PC related SRT.

There is no free ride in our treatments. I am sincerely thankful that for most men, they can get through their surgeries, their seeding, their RT and SRT without major incidents, and that is a good thing. But all treatments come with risks, side effects, and chances of complications, regardless of how rare they may be while looking at stats on a piece of paper.

When you are the stat, it takes on a whole different meaning, trust me. Who could have guessed that in a little over 14 month from my open surgery, that I would be on my 12 catheter, and today was my 123rd day in a row on caths right now, not counting the over 100 days I was on one or the other prior to October 1. I am finding it harder to be patient, and starting to lose my normal cool attitude about the whole thing, i know its mostly the pain talking, but how much is one expected to go through?

So I say to all men contemplating their primary treatment. Choose slowly, choose wisely, do all due dilligence. If you can safely do AS, then spare your body and do AS as long as possible. If you can avoid surgery with a safe alternative like seeding or seeding with IMRT, then consider that, and if you absolutely need surgery, get the absolute best surgeon you have access to.

Hope for the best, plan for the worse, that's how I have always gotten through the medical maladies in my life. I want a happy ending as much as the next man here, trust me, but things happen, things that are just simply out of our control, and things that just don't go by the charts or nanograms. Reality is reality.

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: 1/10 .12
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 43 days, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 1/31/2010 11:08 PM (GMT -6)   
Please read David's most recent post here.  All treatments have the potential of side effects.  David has suffered greatly from two of them.
 
I say again, all treatments have the potential of side effects.  All of them.  Please read David's most recent post.
 
I experienced 88 grays of Image Guided radiation over 43 session.  I have experienced virtually no side effects.  Almost none.  A bit of fatigue for a couple of weeks. 
 
I am not saying this to denigrate the misery that some of you are experiencing.  I am concerned that some new guys may misread and think that radiation treatment means that they will suffer the same.  Most don't.
 
I don't recommend any treatment.  Never have.  But don't get too upset about one thread.
 
Regards,
 
Bill 
 
 
 
 
 
August of 2006, PSA up to 4.2 from 2.7 one year ago. 
October free and total PSA 12% free and 5.0 total.
A month, or so later, 4.7.
Late in the year decide on Image Guided IMRT.
Begin 43 treatments on January 23, 2007 and finish on March 23.
 
Wow, almost two years behind.  I had a typical radiation bounce that
scared me, but it seems to be ok.  PSA is about 1.0 which is ok for
a rad guy at this stage of the game.
 
Got my FAA medical certificate back four months after starting my
treatment.  It's still a First Class, just jumping through a few hoops.
 
October, 2009.  Latest PSA is still 1.0 - that would make you surgery guys nuts, but it's just fine for a rad guy.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/31/2010 11:44 PM (GMT -6)   
Bill,
My experience with adjuvant Rt has been the same os your primary treatment. No SE's. RT is indeed lower in SE's, at least in the immediate time after therapy. Some people just don't do well with them, and I attribute that mostly to application than modality. Like every where else in choosing therapy, choose your doctors wisely. That stated, no doctor or center is without those bad experiences.

LOL, get your mach back to Vegas...I want to see the new wings.

Tony
Prostate Cancer Forum Co-Moderator


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/1/2010 10:07 AM (GMT -6)   
I don't post to scare anyone. I post my own personal reality, whether it be positive or negative. I have also goine out of my way to explain that my constant stricture/blockage/catheter problems are in a minority group and have explained that my negative reaction to radiation treatments is also in the minority group.

Most men fit the high percentage groups of going through their treatment regiments without any major issues, that's what the numbers and stats show, that's how it is.

I feel it would sugar coat the information if only feel good I'm ok No problem accounts were published here. It would do a dis service to all that seek the truth and information here.

I could downplay or even hide any future negative reports, but I wouldn't feel honest or right about my purpose here. Don't shoot the messenger, just listen to the message.

In my PC journey, I have had some good stories too early on. If one is tired of hearing these stories, you can only imagine living the life where you actually have to deal with the problems every single day, hoping and praying that a final solution can be found.

David in SC

PS I just don't want any new man to jump into something without knowing not only the pluses, but the minuses in whatever treatments they are considering. We don't get many , if any second chances in our choices, and we all hope for the same thing, that our treatment choice works.
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: 1/10 .12
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 43 days, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


Lucious
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 2/1/2010 4:52 PM (GMT -6)   
Again everyone the feedback has been tremendous..we need our own chat everynight for prostrate cancer.  If there is not one plan to sign in 8-9:30 pm eastern mon-friday to live up our chat line.  I have not found an active chat line for prostrate cancer but thoroughly enjoy this forum. I went to FWB this weekend only to find one of my friends was going thru the same thing i was; as I mentioned this damage takes a long time to heal for some several months for others several years.  Some of you asked me what works....your diet is very important to ease pain I've tried protofoam and canasa suppositories, multi-vitamins,addt vitamin C&E Over a year of treating symptons I must say my pain and spasm have diminished and no longer like my initial spasm and pain period that lasted anywhere from 12-24hrs...thank U Lord...I will be on at 7pm on the prostrate chat and everynight during the week...be there or be square.....again thanks guys for all the Super feedback

Post Edited (Lucious) : 2/3/2010 12:33:29 PM (GMT-7)

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