Patient Forum

The CyberKnife Patient Forum is designed to provide a place for people who have been diagnosed with cancer, their family and friends, to exchange useful information and provide support to one another. The Forum may also help people find answers to questions they have about the CyberKnife treatment experience. Accuray strives to facilitate these exchanges and encourage discussions. Recently we have experienced some aggressive or inappropriate spam postings. We are diligently working to resolve this issue and thank you in advance for your patience.

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radiation scarring
Posted: Thursday, April 16, 2015 1:06 PM
Joined: 3/22/2010
Posts: 23

May will be 5 years post CK and I am one of the few that have lasting side effects or collateral damage. I have had 2 TURP and 2 TURBN procedures, the last was in January. I was told that the radiation scarring of the bladder neck was a probable result of the higher dose of radiation being used. So the hospital did not have enough experience to know which dose of radiation was best. I self cath 4-5 times a week to keep the bladder neck "supple" and not develop more scarring. My question is- has anyone else developed bladder neck radiation scarring ? If so, what procedure have you had ? I do not know if it is possible to remove some of the scar tissue. My urologist does not recommend that but I have read on line that it might be OK using a drug called mitomycin-c to reduce scar tissue reforming. thanks--Walter


Posted: Friday, April 17, 2015 1:18 PM
Joined: 10/29/2010
Posts: 800

Walter : So sorry to hear about your situation. I haven't had any long term or serious issues to report. Please keep us updated. How many PCa cases had your Center done prior to your treatment ? And do you know if this is a common problem at your Center ? JAV

Treated with CK 4-2011.  Gleason of 3+4 , PSA 3.7
 PSA on 7-13 , 0.3
 PSA on 11-13 , 0.3
 PSA on 5-14 ,  0.3
 PSA on 7-14 ,  0.2
 PSA on 11-14,  0.2

Posted: Saturday, April 18, 2015 2:23 AM
Joined: 3/22/2010
Posts: 23

JAV- thanks for the reply. I have no idea on how many CK cases the hospital had treated, or any technical numbers about my PC other than 1 core had a Gleason of 4&3 or 3&4 ( 2 labs reading the biopsy). My PSA had gone from 1.7 to 2.7 but was never checked again before receiving the radiation. I had 4 doctors opinions and all told me I had to do some type of treatment, albeit 6 different methods were suggested. In hind sight I wish that I had waited but of course that is 20-20 .


Posted: Saturday, April 18, 2015 10:34 AM
Joined: 8/8/2010
Posts: 666

Walter, I'm sorry to hear about your suffering from bladder neck contracture. I more often hear it from guys who have had surgery rather than radiation. I think with your GS 4+3, you really had to get treated. Assuming they did not use an abnormally high radiation dose on you, no one could have predicted that you would be one of those who would be super-sensitive to the pro-fibrotic effects of radiation. I hope you won't second guess your decision, which was a good one, given what you knew at the time. As you sadly have learned, you seem prone to scarring, so attempts to physically remove the scar tissue (as with TURP or laser TURP) may only make it worse. I think it is worthwhile looking into mytomycin-c to prevent fibrosis if you can find a doctor who is experienced in using it for such applications. Xiaflex, which is a collagenase, was recently FDA approved for Peyronie's, and has been used to dissolve fibrotic tissue. Perhaps there is a clinical trial for its use with bladder neck contracture? - Allen

- Allen (not an MD)
alan katz md
Posted: Wednesday, April 22, 2015 8:27 AM
Joined: 10/10/2008
Posts: 562

Scarring at the bladder neck seems dose related. I have not really seen it with 35 gy but have a bit more often with 36.25. I think even higher doses will increase the risk further. I agree with Allen E that more surgical intervention will probably just make it worse. I would agree with trying Mitomycin C but I have no experience with itn

Alan J Katz MD JD

Flushing Radiation Oncology

40-22 Main St  Flushing NY


Posted: Tuesday, May 29, 2018 6:09 AM
Joined: 5/29/2018
Posts: 1

How is Peyronie’s Disease Treated? SURGERY - XIAFLEX - ANDROPEYRONIE In a very few number of cases (about 13 out of 100), Peyronie's disease goes away without being treated. Many health care experts suggest treating the disease without surgery for the first 12 months after the disease is first noticed. Men with small plaques, not much curving of the penis, no pain, and no problems with sex may not need to be treated. If you need to be treated, there are 3 choices. 1 Surgery for Peyronie's Disease : There are 3 basic ways to fix Peyronie's disease with surgery, but Surgery is not without risks and can include shortening of the penis (scar retraction) and a chance that the distortion will return. COST: $25,000 - $35,000 -making the side of the penis opposite the plaque shorter -making the side of the penis that curves longer -placing a prosthetic device inside the penis 2 Penile Injections ( XIAFLEX® ) COST: 2 vials $2,650 Injecting a drug right into the plaque brings higher doses of the drug to the problem than when a drug is taken by mouth. Plaque injection is often used for men with acute phase disease who aren't sure they want to have surgery. The skin is often numbed before the shot to reduce pain. Injection of CCG into collagen-containing structures such as the corpora cavernosa of the penis may result in damage to those structures and possible injury such as corporal rupture. Treatment of Peyronie's disease with intralesional therapy: Injection of collagenase is contraindicated in the treatment of Peyronie’s plaques that involve the penile urethra due to potential risk to this structure and in patients with a history of hypersensitivity to collagenase used in any other therapeutic application or application method. Injection of collagenase into collagen-containing structures such as the corpora cavernosa of the penis may result in damage to those structures and possible injury such as corporal rupture (penile fracture). 3 ANDROPEYRONIE® COST: $200 Treatment of Peyronie's disease with penile traction therapy (ANDROPEYRONIE). Penile traction therapy (PTT) is used to avoid penis shortening after prostate surgery, which can be used as penile rehab. it would be an effective and safe method Without expensive risky surgery or injections. Andromedical, a urology laboratory which has been investigating medical, non-invasive treatments to Peyronie’s disease, micropenis, post radical prostatectomy penile rehab and erectile dysfunction for 20 years. Andropeyronie is a simple, effective and non-invasive treatment of the correction of penile curvature. Andropeyronie reduces the curvature of the penis + 50%. Andropeyronie increases the length of the penis and also the girth.


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