Surgery vs Radiation

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Been there
Regular Member


Date Joined Jun 2008
Total Posts : 22
   Posted 6/20/2008 4:38 PM (GMT -7)   
As both a PC and an external beam radiation victim, at least that is what I feel like now, due to post radiation rectum burn lasting 6 weeks with no sign of leaving -- I have two questions.
 
1. Can anyone tell me why anyone, after reading all these posts here would not choose surgery? If I had read this forum before I made my decision for IBRT, I think my rear end would be feeling a whole lot better than it is right now.
 
2. Is there anyone here in this PC group who also made the choice for IMRT, who's quality of life, like mine, went from good to awful in 2 short months due to rectum burn? DID IT EVER GET BETTER?
 
Thanks in advance for your help.
 
Been there.

smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 6/20/2008 5:07 PM (GMT -7)   

been there

I have today finished my 19th IMRT treatment and I have not experienced any burn.  A little tired, some upset stomach, and fatigue.  I still have more to go but only 6 more IMRT and then go to Proton.  They say that down the road side affect to Proton might be rectal bleeding but it is not suppose to be severe and is supposed to correct itself.

I am of the opinion that no matter what we chose as our method to fight this cancer we face some negative side affect possibilities.

I wish I could give  you some advice but I can't.  All I can say is hang in there and I hope things process to a better place for you.

Richard yeah tongue yeah


Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
Jan & Feb & Mar all tests clear
MD Anderson = No surgery and No Proton only Hormone and IMRT
Contacted with Loma Linda and UFPTI in FL
Started Treatment at the U of Florida Proton Therapy Institute in April 2008
May 2, 2008 LUPRON & Casodex
IMRT to started  5/27/2008 Will get 42 treatments 19 IMRT and then 23 Proton
Turn Stumbling Blocks into Steping Stones and Keep Smiling
Our Journey is on WWW.GLEASON10.COM
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 6/20/2008 5:13 PM (GMT -7)   
Still others here have had IMRT without bad side effects. All treatments, including surgery can have bad or very bad side effects -- you have just been unlucky. I have seen radiation burns described as bad sunburn, which does heal up eventually. Sorry I can't suggest a time frame.

With these treatments, the bad effects come first, and the good effects come later. All I can say is hang in there and wait for the good effects to arrive :-)


Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week PSA: 0 

Post Edited (Piano) : 6/20/2008 6:16:59 PM (GMT-6)


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 6/20/2008 5:25 PM (GMT -7)   
I'm almost 3 years past 5 weeks of IMRT and then 3 sessions of HDR brachytherapy.

No rectal burning and yes, I would choose it again over surgery - no ED and no incontinence from day one.

Did you do your 'due diligence' before deciding on which facility/radiation oncologist to use? Have you discussed this problem with your radiation oncologist? If you weren't satisfied with his/her response, did you consult another?

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - PSA undetectable, T is 20 and only one nodule has grown (from 8mm to 12mm). Feeling much more confident than after 2/2008 reports

Post Edited (Gordy) : 6/20/2008 6:29:22 PM (GMT-6)


Been there
Regular Member


Date Joined Jun 2008
Total Posts : 22
   Posted 6/20/2008 7:32 PM (GMT -7)   
Les,

I realize now that due diligence was not done. Mostly because there are only two radiogists in the county. I'm a newcomer to the county and all the locals love these guys, including my wife and other local people I know who have been treated by them. So, I thought I'd be safe, as I was told, "You will be in safe hands." What I need now is some input from people who have experienced the same problem I have, and an indication how long it will be before I heal inside. My rad/onc says I will heal -- but that is not what is happening. I've done the suppository route, without success. The past two months have been a nightmare.

jackcc
Regular Member


Date Joined May 2006
Total Posts : 80
   Posted 6/20/2008 10:44 PM (GMT -7)   
Been there

If you don't get a satisfactory response here, you might check out this site.

www.yananow.net/ - 9k

Its called...... You are not alone. There a lot of information there. Look in the section called Experiences. I hope your pain will end soon. I wish you the best.

Been there
Regular Member


Date Joined Jun 2008
Total Posts : 22
   Posted 6/20/2008 11:13 PM (GMT -7)   
jackcc,
 
I have checked out YANA, it is a good site. However, I am unable to find one person there who has the problem I now have. This is very frustrating because I have no reference to find out what I can expect. If anyone on this site knows someone who can put me in touch with a radiation rectal burn victim, man or woman, please let me know who they are. My rad/onc tells me the problem will go away, he also tells me he has no clue about what caused it. All I know now is that it is not going away. The past three months have been a nightmare, my quality of life has become like someone who survived Hiroshima near ground zero! Are there any radiation professionals on this website who can answer these type of questions?

don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/21/2008 2:32 PM (GMT -7)   
Hi Been there,

Another site that I have visited and gotten excellent responses from (along with this site) prior to deciding on the IMRT treatment for myself is prostatepointers.org. You will have to register so do so under the EBRT section and post your comment. I am sure you will receive excellent information as I did from people who have been there. Just so you know I have not started my IMRT yet as I have been on hormones and expect to begin on July 7. My oncologist has stated that the side effects you are experiencing are possible and the severity is an individual response thing. He did say that there are drugs that can help alleviate the side effects if they become severe. He did not elaborate as to what drugs for what side effects but you may want to discuss this with your doctor.

You may also want to do a web search for an oncologist in a nearby city if you are not satisfied with the local physician. At least you would get unbiased information. (Hopefully)

Good luck and wishes for a speedy recovery.
Don

Been there
Regular Member


Date Joined Jun 2008
Total Posts : 22
   Posted 6/21/2008 3:01 PM (GMT -7)   
Don,

Thanks for your input. Today my approach is what is done is done, maybe I should have done more research regarding my rad/onc, but that was yesterday. This whole PC thing is a learning process, we all seem to have a slightly different story to tell, some better than others. I am going to beat this thing. Good luck with your IMRT, if they tell you to drink two glasses of water, drink four! IGRT also helps target your prostate, due to three gold implants placed in your prostate, it is a painless procedure. If your rad/onc says he doesn't use this, ask him why not? If he say's he doesn't use it let me know why. If you begin to have bowel turbulence around treatment #15, don't play Mr. Tough Guy, like I did, take a week's break. PC cancer is slow growing and taking a break will not effect your outcome. Keep in touch.

lvdgs
Regular Member


Date Joined May 2008
Total Posts : 70
   Posted 6/21/2008 4:36 PM (GMT -7)   
Been there,

I was wondering if you had a colonoscopy before you started treatment? My husband was told hemorrhoids can be a problem when having radiation. He will be having Brachytherapy in July and had his colonoscopy done in April to check for polyps as well. I'm going to have him take Zyflamend before and after the radiation.

Been there
Regular Member


Date Joined Jun 2008
Total Posts : 22
   Posted 6/22/2008 11:34 AM (GMT -7)   
Ivdgs,

I had a colonscopy two months before radiation, I had three polyps removed and the rectum was okay. I had no reason to expect the problem I have now. My advice to you is to research your rad/onc doc department very well, do not listen to the hype, and if possible research the staff he has.

Been there
Regular Member


Date Joined Jun 2008
Total Posts : 22
   Posted 6/22/2008 12:12 PM (GMT -7)   
Ivdgs,

PS: Regarding the Zyflamend, talk to your rad/onc doc before your husband begins taking it. It probably cannot hurt but check anyway.

jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 6/23/2008 5:15 PM (GMT -7)   

Dear Been there,

I had 43 IGRT treatments and my experience has been the opposite of yours.  Each time I come here I am thrilled and pleased that I did NOT have surgery.  The incontinence and ED issues are not uncommon.  I suffer from neither.  Please understand that this is primarily a surgery site.  All are welcome, but very few of us have done the radiation bit. 

I am sorry that you are having so many problems and wish better for you.  My friend has not yet responded about his issues.  I'll post when he does.

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.
Four month post treatment PSA is 1.9.
Seven month PSA is 0.8.


Been there
Regular Member


Date Joined Jun 2008
Total Posts : 22
   Posted 6/23/2008 7:04 PM (GMT -7)   
Bill,

Thanks for getting back with me. If you can get your friend to respond I think it would help me get a grip on when, if and how I can overcome this problem. Right now all I am doing is waiting and hoping things will get better but I have no reference point from anyone here who has gone through this. I have no urinary problems, no blood in my stools, just a very sore rectum, internally. I know most men have no problems with IMRT/IGRT, and I was frustrated in my first post, and yes, we are a minority PC treatment here. I just want to get on with my life and get back to DFW for a visit, I have a lot of good memories of DFW, it was a very good place to me, people were friendly, they said what they meant, and did what they said. I was one of those who wasn't born in Texas but got there as fast as they could. Both my boys were born there, the youngest is there visiting DFW as I write this, he is a military officer, stationed overseas and also is a jet guy!

Regards,
Been there.

PCADVOCATE&MENTOR
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/29/2008 7:56 AM (GMT -7)   
Hyperbaric Oxygen therapy may be the very thing you require!  Here is some info on the subject:
 
"Late radiation proctopathy is a painful and vexing complication of prostate radiation. We report a case of a 55-year-old man with prostate cancer, and complaints of tenesmus and severe rectal pain after radiation therapy. The patient was diagnosed with a locally advanced Gleason score 8 prostate cancer and an increased prostate-specific antigen of 42.3 ng/ml. His past medical history was notable for a history of bilateral lymph node dissection complicated by Clostridium difficile colitis. He subsequently received 3-dimensional conformal radiation therapy. Seven months after completing therapy, minor rectal bleeding and significant pain developed, requiring increasing doses of opioid analgesics. Fourteen months after 3-dimensional conformal radiation therapy, sigmoidoscopy revealed a single chronic deep ulcer at the anorectal junction. As an alternative to diverting colostomy, the patient underwent a course of hyperbaric oxygen. Within 1 month of completing hyperbaric oxygen treatment, his symptoms completely resolved. Nine months from completion of hyperbaric oxygen therapy, he has had no recurrence of symptoms. Hyperbaric oxygen therapy can be considered a treatment option after failure of standard treatments in patients with severe radiation proctopathy."
 
I'd certainly encourage your physician to look further into referring you for this treatment.  Note too that the report starts out with the word "proctopathy" which suggests a "proctologist" for discussion/treatment oversight.  I'd also suggest checking your health insurance to make sure the procedure would be covered

Guy66
Regular Member


Date Joined Jul 2008
Total Posts : 32
   Posted 7/29/2008 9:07 AM (GMT -7)   
Since my prostate was unusually large, and had "tucked under" adjoining structures, my options were pretty much limited to surgery or watchful waiting. I don't consider watchful waiting a good option for someone who is in otherwise good health as fairly young. My wife is an RN with lots of practical experience with patients having radiation for a variety of cancers. General fatigue and damage to adjacent tissues are very common. The larger and deeper the tumor, the greater the likelyhood of "burn" beyond the tumor itself. With invasive cancers that have moved beyond the prostate, radiation is much more likely to be a necessity rather than an option. Your side effects are not at all uncommon. My wife was dx'd with breast cancer last year and chose not to have radiation because of the frequency of complications. Here tumor, though small, was deep and adjacent to her chest wall. The Onc Radiologist was all too optimistic about how great the results would be (I think all the specialists tend to favor their own). My wife smiled sweetly, said thank you, and didn't go back. She chose a mastectomy and has been NED (no evidence of disease) for two years now. My personal philosophy (I am sure many might disagree) is that early detection and surgical removal give a person the best overall odds. If not caught early, then aggresive treatment with any and all options should be on the table. Sorry this is long, I'm a noob who hasn't had much opportunity to discuss these matters except with my wife. :)
Guy 66
first biopsy was in 1997. Neg. Dx BPH PSA 5.4
second biopsy in 2001 neg again PSA 9.8
passed blood Feb 08 3rd biopsy positive PSA 14.6 Gleason (3+3)=6
Pre op Xrays, CT scans, bone scans all neg
Da Vinci surgery 3/3/08 no complications, nodes clear
Significant post op discomfort for approx one week
Daily improvement 2nd week, near nornal mobility, etc 4th week
Filled pads every 2 hours for first month, gradually improved to not wearing pads after 2 months. Whoopee!
Occasional small leak when sneezing or farting, haha
Total loss of erectile function so far, some loss of rectal muscle function also.
Currently back to 100% physically, working out, etc.
Some lingering attitude issues over lack of function. Anger sometimes, moderate depression sometimes. Feel good physically but lingering changes in emotions. Joi da vie not the same. Feel lucky overall, but emotionally flat. A vague sense of loss, diminished pleasure in life. Hope to rebound as time goes by. Survived melanoma in 2000, pacemaker in 2002. Three time winner? Doesn't feel that way.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/29/2008 9:37 AM (GMT -7)   

MCPO, first Welcome to our little club. 

 I'd be interested in getting the link to the source of the hyperbolic saturation study you included.  I know a lot of new work is being done now with it for other things. 

 

 


James C.
Co-Moderator- Prostate Cancer Forum

Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
7/31/08 ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's:  3 mts-0, 6 mts.-0, 9 mts.-0.


PCADVOCATE&MENTOR
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/29/2008 12:29 PM (GMT -7)   
Just found out you cannot start a reply here and then click to go elsewhere for reference material then return. Had already typed the following, so will try for it again. I am a Prostate Cancer Advocate having survived RP Dec. 1992, EBRT Mar-Mary 1993, and continuing ADT with ADT2 1996-2001, off (IADT w/no maintenance medication) 2001-2003, ADT3 late 2003-early 2005, off (IADT w/dutasteride/Avodart) early 2005 to the present. A patient contacted me experiencing radiation rectal burn explaining extreme discomfort/pain and nothing his physicians prescribing helping. He asked if I had heard of hyperbaric oxygen therapy, so I entered "Treating Radiation Rectal Burn" in the Google search box and among several posts on the subject found the information provided here earlier at
http://linkinghub.elsevier.com/retrieve/pii/S107814390600041X. Appears to me a reasonable consideration since I have heard from a couple other patients wherein this therapy resolved their problem.

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 7/29/2008 7:56 PM (GMT -7)   
Been There, Those of us that are unlucky enough that we don't breeze through our treatments options with little or no unusual side effects do have some measure of regret. I myself have wondered "what if" many times! But at this point what good does it do me? All I can do is keep moving forward and keep trying to make informed decisions regarding my ongoing treatment. Don't beat yourself up. Just keep moving forward.

KW
    43 at Dx and Surgery
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
     


PCADVOCATE&MENTOR
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/30/2008 8:57 AM (GMT -7)   
Sorry to learn of your difficulties, kw. Have a friend who also had failed sling and resorted to AUS. Now very satisfied. His installed at MAYO in Minneapolis area.
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