Cyberknife for Prostate side effects?

Will be starting Cyberknife here in San Antonio soon. 5 treatments over 10 days. Is there a Cyberknife (Prostate) Users Group out there?
Who's done this and what effects did you have?

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By and large, "physical" support groups include people with all types of treatment. Cyberknife is (I think) a kind of external-beam radiation, and any support group will have people treated like that.

You'll find a directory of USTOO support groups here:

http://www.ustoo.org/Chapter_NearYou.asp?country1=United%20States

. Charles

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I'll respond in three posts:
(1) My own recent experience.
(2) The range of potential short-term side effects from any radiation treatment, including CyberKnife.
(3) Side effect "grading" and two published studies comparing CyberKnife and IMRT short-term side effects.

(1) The most active Internet CyberKnife forum is at:
http://www.cyberknife.com/Forum.aspx?g=topics&f=2586
Notable at this site is that 3 or 4 CyberKnife doctors actively participate in discussions and answer questions. One can read posts as a 'guest.' To comment or make a new post one must register-- it's free.

I completed 5 CyberKnife sessions on March 6 th. An somewhat dated but in-depth paper describing CyberKnife in detail is at:
http://www.urosource.com/fileadmin/user_upload/european_urology/Morgia%20FL E.pdf

The first step is the implantation of 4 small gold pellets (fiducials) in the prostate as "landmarks" to guide treatment planning and delivery. To minimize infection, most doctors do this under ultrasound guidance and mild anesthesia through the peritoneum (between the scrotum and rectum) rather than through the rectum. I found this much less bothersome than a conventional prostate biopsy.
Ten days after the fiducials are implanted both a CT and MRI scan are done to input into the radiation planning software and develop a 3-D simulation model that will guide the radiation delivery.
My dosage plan was for a homogeneous distribution across the prostate with a 3 mm margin along the rectum and 5 mm elsewhere. Each session involved the robotic arm with the linear accelerator delivering 147 individual beams. My treatment used the "IRIS" system which more precisely controls the radiation beams.
Nothing is felt during the sessions. The only challenge is to stay still- if the prostate moves outside the planned area, the radiation stops for the system to adjust to the new location. If there are no interruptions for movement, a session lasted about 35 minutes.
Preparation the day before the CT and MRI imaging and each radiation session is to take a mild laxative and follow a low-fiber diet with 'Beano' to reduce the chance of intestinal gas build up. A fleet enema is done within two hours or so of each radiation session.

I had my first two sessions on a Thursday and Friday and the last three the following Monday-Wednesday.

Most men have no serious short-term side effects from the CyberKnife radiation. Published studies show less than 5 % of patients have urinary or bowel side effects bothersome enough to require medication. Flomax (1/day) is prescribed during and after the sessions to reduce urinary problems. Those side effects that do occur generally are gone in two to three weeks after the last session.

I was somewhat of an exception and fell into that less than 5% group. I'm 70, in excellent health, rather pain tolerant. Previous urinary problems confined to occasional prostatitis attacks, sleep interruptions to urinate very, very, rare despite a somewhat enlarged prostate (65 cc). No bowel problems. Could spend a half-day hiking or back country skiing with no urinary or bowel incontinence issues.

Over the weekend between my 2nd and 3rd radiation, I developed severe urinary frequency and pain. Had to get up at night every hour to 90 minutes. Monday the CyberKnife doctor told me to increase Flomax to 2/day and prescribed phenazopyridine. For me this was a miracle drug. Urine turned orange in 30 minutes, pain significantly diminished in an hour, gone not to return in a day. Urinary frequency diminished over the following three days. Urinary pain may have been partially a function of indications of prostatitis prior to the radiation.

Then, after the last radiation, bowel/rectal symptoms started to increase. Chronic dull pain in the anal area- felt like someone hit it with a hammer. Frequent urges for painful bowel movements, but only a few soft 'pellets' produced. "Had to go" as frequently as every 90 minutes with very little time to make it to the bathroom. Always felt like there was 'more to come' with no result. By 7 days after the last treatment, I was discouraged that the symptoms (radiation proctitis) seemed to be getting worse. The CK doctor prescribed ProtoFoam (Hydrocortizone). A case nurse from my Cigna insurance following my treatment by telephone suggested warm soaks of the 'bottom' and prune juice as a mild laxative. Both worked! Gradually the proctitis symptoms waned, and by three weeks after the last treatment, everything was back to normal.

So, the bad news for me was that side effects were worse than anticipated. The good news was that they were effectively treated by prescriptions and all were gone within three weeks.

The average PSA results after CyberKnife are: by 6 months a 50% reduction in PSA; by 12 months a PSA of 1.0 or less; by 18 months a PSA of 0.1 or less.

I had been doing Active Surveillance for over 6 years before moving to treatment, with a long-term PSA record and both color Doppler Ultrasound and MRI imaging. In May 2012 my PSA had reached 8.9 I started Avodart late May to shrink the prostate and and potentially arrest the cancer while I fought with insurance companies for CyberKnife treatment. By January 2013 the Avodart had reduced and stablized my PSA at 3.8 to 4.0 (about a 50% reduction is common with Avodart).

Although a 3-month wait after CyberKnife treatment before the first PSA is generally recommended, I re-tested after 1 month. Still taking Avodart, my PSA had fallen to 1.4, a reduction of more than 50% in the first month from treatment. So far, so good.....

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CyberKnife Post #2
All radiation treatments for prostate cancer can have short-term side effects due to radiation trauma to the prostate and surrounding tissues. In retrospect, part of my discouragement in the first week after CyberKnife treatment was not realistically anticipating the potential short term side effects. Afterwards, I found on the Internet this good summary of what could be expected. Although most men do not experience many or most of these with CyberKnife, I think it can be beneficial to know in advance what might happen.

-------------------------------- What to expect after prostate radiation-----------------------
Urinary, rectal and sexual side effects of treatment are usually mild and transient, although they may be worse if you are especially sensitive to radiation, are an older man, or had symptoms before you started radiation therapy. Some side effects described below may occur in many men starting anytime from a week to a month after treatment and continuing for weeks or months. The duration and intensity vary greatly between men.

If any of those symptoms interfere with your day-to-day living, call your doctor. He may be able to prescribe medication that can help alleviate those symptoms.

Urinary

Total incontinence is uncommon. There may be some leakage or dribbling. Other common side effects are irritation, burning or bleeding while urinating, feeling like you have to urinate immediately even when you know your bladder isn’t full, having to wake up several times during the night to urinate, or having to urinate frequently during the day. You may pass small amounts of blood or blood clots; however, if you are bleeding copiously when you urinate, contact your doctor immediately.

A rare but potentially serious side effect is urinary retention. If you find that you can’t urinate even though your bladder feels full, go to the Emergency Room of the nearest hospital immediately and tell them you are suffering from urinary retention. They must catheterize you to allow the urine to flow out.

Rectal

There may be a feeling like you have to pass a stool but you cannot, and this feeling may recur often. This is called tenesmus. You should be aware that that feeling is from inflammation in your rectum (proctitis), not from actual stool there, and if you strain, you may create hemorrhoids. You may have frequent bowel movements. There may be blood in your stools or blood may drip out. Hemorrhoids may occur. Sometimes stool may leak out, especially when you are passing gas. Stool may be loose, or it may be especially hard.

If you have diarrhea for more than a few days, call your doctor. If the bleeding is copious, call your doctor.

Sexual

Semen will probably dry up soon after treatment, although there may be small amounts of fluid. Occasionally, you may see some blood in that fluid or a few drops of blood may drip out after orgasm.

You may notice that, over time, erections are not as hard or as long-lasting. To protect the blood vessels supplying your penis with blood, your doctor may have prescribed Viagra or a similar medication. You should continue to take that medication for at least 6 months after the end of treatment, even though it seems like you don’t need it.

Testosterone levels often drop following radiation, but may eventually return to normal levels. Because of this, you may notice a drop in the level of your sexual desire/libido. Some men experience difficulty reaching orgasm.

If any of the symptoms are bothersome, you may want to consult with a doctor who specializes in Sexual Medicine.

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CyberKnife Post #3

So, how are radiation side effects graded and how does CyberKnife compare to IMRT?

Side effects after treatment are classified as "acute toxicity", felt in the first 30 to 90 days after treatment, and "chronic toxicity"-- long term effects.
Side effects usually are assigned a 'grade'. The label 'toxicity' can be misleading as most men would not describe Grades 1 and 2 as being 'toxic.'

Grade 1: bothersome but not interfering with normal daily functions so as to require medication.
Grade 2: affecting normal daily functions to the point that medication is required and will resolve the problems
Grade 3: medical intervention required- catheter, potentially surgery.

CyberKnife radiation to the prostate can result in a range of short-term side effects typical of any form of radiation, but, because of the precision of CyberKnife delivery, the incidence of radiation side effects with CyberKnife are lower than most other type of radiation.

Two published results for 'acute' (short term) side effects:

CyberKnifeIMRT
Katz (1) Vora et al (2)
GU GenitoUrinary
Grade 2 2.1% 44%
Grade 3 0 2.6%
GI GastroIntestinal
Grade 2 1.4% 53%
Grade 3 0 0.7%

(1) Katz, 2012, Stereotactic Body Radiation Therapy Offers
a Safe, Non-invasive Treatment for Prostate Cancer Patients
Over 70 Years Old: ASTRO Conf. 2012, Abs. 2380
142 men 70 years and older receiving CyberKnife radiation

(2) Vora, Wong, Schild, Ezzell, Andrews, Ferrigini, Swanson, 2013;
Nine-year Outcome and Toxicity in Patients treated with IMRT
for Localized Prostate Cancer; Jour. Urology 2013.02.012
302 men treated with image guided IMRT between 7/2000 and 5/2005

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CyberKnife Post #3

So, how are radiation side effects graded and how does CyberKnife compare to IMRT?

Side effects after treatment are classified as "acute toxicity", felt in the first 30 to 90 days after treatment, and "chronic toxicity"-- long term effects.
Side effects usually are assigned a 'grade'. The label 'toxicity' can be misleading as most men would not describe Grades 1 and 2 as being 'toxic.'

Grade 1: bothersome but not interfering with normal daily functions so as to require medication.
Grade 2: affecting normal daily functions to the point that medication is required and will resolve the problems
Grade 3: medical intervention required- catheter, potentially surgery.

CyberKnife radiation to the prostate can result in a range of short-term side effects typical of any form of radiation, but, because of the precision of CyberKnife delivery, the incidence of radiation side effects with CyberKnife are lower than most other type of radiation.

Two published results for 'acute' (short term) side effects:

CyberKnifeIMRT
Katz (1) Vora et al (2)
GU GenitoUrinary
Grade 2 2.1% 44%
Grade 3 0 2.6%
GI GastroIntestinal
Grade 2 1.4% 53%
Grade 3 0 0.7%

(1) Katz, 2012, Stereotactic Body Radiation Therapy Offers
a Safe, Non-invasive Treatment for Prostate Cancer Patients
Over 70 Years Old: ASTRO Conf. 2012, Abs. 2380
142 men 70 years and older receiving CyberKnife radiation

(2) Vora, Wong, Schild, Ezzell, Andrews, Ferrigini, Swanson, 2013;
Nine-year Outcome and Toxicity in Patients treated with IMRT
for Localized Prostate Cancer; Jour. Urology 2013.02.012
302 men treated with image guided IMRT between 7/2000 and 5/2005

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The format of the last post was screwed up, I'll try again.
__________________CyberKnife_____________IMRT
__________________Katz (1) _______________Vora et al (2)
GU GenitoUrinary
Grade 2___________2.1% __________________44%
Grade 3___________0______________________ 2.6%
GI GastroIntestinal
Grade 2___________1.4%___________________53%
Grade 3___________0______________________ 0.7%

(1) Katz, 2012, Stereotactic Body Radiation Therapy Offers
a Safe, Non-invasive Treatment for Prostate Cancer Patients
Over 70 Years Old: ASTRO Conf. 2012, Abs. 2380
142 men 70 years and older receiving CyberKnife radiation

(2) Vora, Wong, Schild, Ezzell, Andrews, Ferrigini, Swanson, 2013;
Nine-year Outcome and Toxicity in Patients treated with IMRT
for Localized Prostate Cancer; Jour. Urology 2013.02.012
302 men treated with image guided IMRT between 7/2000 and 5/2005

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Thanks all,
Sounds like I'd better get some Depends.
Will keep you posted.
Cheers,
ericthered

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I never needed Depends. Unlike surgery, no 'leaking'. Just had to go when I had to go....

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