My experience has been a nightmare!

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jonjustjon
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/17/2008 8:29 PM (GMT -7)   
I had brachytherapy in 2004. Immediately, I had pain with urination, arrousal, and ejaculation. In July of 2005, I had pain in my bladder and genitals that dropped me to my knees. I went into the hospital in mid July, and by the end of August I had received an interthecal pump to manage the pain. Then it was 30 trips to Hyperbaric Oxygen Therapy. I was finally sent home in Sept.

The pump helped, but copious amounts of oral narcotics were still required to make life tolerable. I had two serious infections at the back of my spine where the catheter went into the interthecal sac. After the second infection, I had to have the pump removed, and then went through withdrawls.

It is now 2008, and I still experience brutal pain with arousal and ejaculation. I haven't worked,( in fact I had to sell my business) since 2004. Even if I do nothing more than get aroused, I am in pain, and take several days to recover.

I wish I'd never gone through with the brachytherapy. I wish I'd had the surgery to have the cancer removed. This has been the most painful experience of my life, from day one! I've had bulged disc's and broken bones and they were nothing compared to this!

I hope you will reconsider the brachytherapy. And if you go through with it, I pray that you will not have the problems I have had to deal with!

Jon

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 5/17/2008 8:33 PM (GMT -7)   
WOW....I'm so sorry to hear about your comlpications. Would you mind posting your age and some stats to your profile.
We all wish you well and hope you can find some answers to your problems.
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.
 
     


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 5/18/2008 3:54 AM (GMT -7)   

I'm sorry to hear of your problems too. Of course, the surgery option can have problems too among them incontinence and ED -- which I guess you have not had. Although it seems the way you have been, ED would have been a blessing.

What do the doctors say about the pain? I guess they are saying "give it time". Are your brachy seeds still active? I guess they should be fairly feeble by now -- so let's hope that when the radiation is completely done, your distressing symptoms will also disappear.

Then you may be glad you have an intact, although beaten-up prostate, and nerves that still work. Here's hoping....


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
No erections (of course!)
Experimenting with VED and Bimix
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/18/2008 10:07 AM (GMT -7)   

tongue  Hi ~ jonjustjon and Loved Ones,

 

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/18/2008 10:15 AM (GMT -7)   
Hi jonjustjon,
We have had a few here with adverse side effects with brachytherapy. I think yours is the worst description, but be it known. There are no side effect free treatments for this cancer. I fared well with surgery in the sense that I healed well. But the surgery failed as I had advancing disease. The hormone therapy for me was the worst. I am still on it, and no libido, no sex. I guess what I am saying is that you case is unfortunate. And it is more pronounced than others here who have had difficulty with brachytherapy. It is possible the doctor did not perform well, but the truth be told, it is simply bad luck to be the patient that the doctors performing this procedure warn you about before treatment. You have my prayers that you recover in time. Welcome, and stay with us. Your story is one to be heard.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
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


JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 5/22/2008 1:16 PM (GMT -7)   
Hello jonjustjon,
I am sorry to hear of your experience with Brachytherapy.  My husband underwent Brachytherapy and has never had any of the side effects that you have experienced.
 
I hope you are able to find something to alleviate your pain and I wish you well.
 
JustJulie

Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2268
   Posted 5/22/2008 1:34 PM (GMT -7)   

Wow, what a nightmare!  I am so sorry that you have had such a worst-case experience with brachytherapy.  The vast majority of men who choose this treatment do just fine, with minimal side effects.

Anything can happen, as readers of the fine print on medication information sheets can attest.  I hope that you can get some follow up medical treatment that addresses the problems you are experiencing.

By the way, welcome to the forum.  There are some helpful folks here and a variety of experiences with all kinds of treatments--older, newer, and investigational--and side effects.

 


Age 59  PSA quadrupled in 1 yr (0.6 to 2.5) 
DRE neg  1 of 12 biopsies pos (5%) 
Open surgery June 2006 
Cancer confined to prostate (1 pea-sized area) 
T2a  Gleason 5 (3+2)  PSA < 0.1  


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 5/27/2008 8:06 PM (GMT -7)   
Hi Jon

My heart goes out to you--hopefully you will be able to find a solution to this horrible problem. You didn't mention if you have tried to seek an independent opinion for a top urologist or medical oncologist specialing in PCa, even if you have to go out of town. If not, you should seriously consider doing it. I don't know how you have tolerated this problem for so long. Best of luck to you.

Dave
-69 years young!
-29 core biopsy 9/27/06 at age 68
-PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area], Gleason 6 [less than 5% in two other areas], Negative DRE, bone scan and Endorectal MRI. 
-Completed 39 Proton radiation treatments 2/22/07-4/18/07.   
-PSA History: 7.1 pre-treatment; post treatment: 2.1 (3 mo.), 2.4 (6 mo.), 1.7 (9 mo), 1.6 (12 mo.).  Radiation oncologist said: the 3-mo. drop of 70% exceeded expectations; the slight 6-mo. bump up was not a cause for concern now; expected drop in 12-18 mo. is 75%.
-The following is a link to My Journey With Prostate Cancer -- Proton RadiationTherapy.  
 
 


Gromit'sDad
New Member


Date Joined Mar 2007
Total Posts : 2
   Posted 5/31/2008 7:22 PM (GMT -7)   
Thanks to all, for suggestions and support. Let me try to give you a bit more info. re: my case.

Jon


Age now: 56
Diagnosed at age 51.
Gleason 3/3
T2A_NO-Mo
PSA of 4.8
Cancer in 8 out of 18 cores, volume on ultrasound was 40cc's
Brachtherapy performed for Adenocarcinoma at Kaiser Roseville Hospital- Performed by Dr.Goldman, Drl Linert, and Dr. Workman
38 need'es of iodine-125 seeds placing 108 seeds
Consult before procedure at UCSF with Dr. Shinohara, and after procedure with the decision to place the interthecal pump
Pump implanted at Kaiser San Francisco in 10/05 by Dr. McKendry
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