Cyberknife side effects.

Posted by jaygk @jaygk, 7 hours ago

Considering SBRT Cyberknife. Local Urology group has performed 4,000+ over last 10 years.

I am 65 I have T1c with all 12 cores positive (this seems unusual based on others I have followed). 11 (3 + 3) and 1 (3 + 4) with only < 5% a 4. No cribform or perinureal invasion. Had a CT and MRI. No cancer spread. Had second opinion and not recommended to active surveillance.

ED (only married 5 years )and leaking are important to me. Also worried about radiation bleed over to the rectum

What have been your experience with Cyberknife side effects. They would use the space OAR and 5 treatments. Very skilled radiologist

Any other recommendations for my type of cancer.

Having trouble deciding on treatment. I have been told it’s like pick your poison. .

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

When I had very similar numbers (65y; 3+3 & 3+4; no cribriform pattern, PNI, SVI, ECE, or intraductal carcinoma); had CT, MRI, and bone scans: no indication of spread; for me quality-of-life was equal priority with successful treatment for such low-grade disease.

Similarly, I made the personal choice against active surveillance. (What reasons did they give you for recommending against active surveillance with < 5% of 4?)

I used SpaceOAR Vue (more advanced than regular SpaceOAR Hydrogel).

However, I chose 28 proton radiation treatments over 5 SBRT treatments. (I had treatments during April-May 2022.)

SBRT is a great option with a history of successful results. But, I opted for lower doses each session to lessen the possibility of urinary bother. (Plus proton’s Bragg-Peak characteristic was technically and scientifically appealing to me.)

I didn’t view it as “pick your poison” rather as choosing from a number of good options one that best fit all the priorities that I was looking for.

If you’re a candidate, there are no wrong choices when it comes to radiation technologies these days - you have many good ones to choose from, including SBRT.

Once you’ve decided and settled on all of your priorities, you’ll have no trouble making the decision on a good treatment that’s best for you.

(In my case, right before starting proton radiation treatment, a 2nd opinion came back as 4+3. Not knowing which was “right,” we added 6 months of Eligard to my treatment regimen.)

REPLY

I finished radiation for mine December 28, 2023. I was 68 years old at diagnosis. One core 4+3, one core 3+3. PSA was 7.8, Decipher was high at 0.84. confined to prostate, my PSMA PET was clear.

My RO was able to visualize my urethra on a CT, MRI and the PSMA PET. Using that information he used "urethral steering" to ensure the urethra did not receive any radiation "hot spots". I had 3 fiducials placed and a Barrigel rectal spacer. I was treated with 5 fractions of SBRT over 2 weeks using a Varian Edge LINAC. My prostate received a total of 36.25 Gy with the primary lesion receiving a focal boost to 40Gy. I also took Orgovyx for ADT for 6 months, The entire ride was remarkably easy, and if I had amnesia from the actual two weeks of treatment I would be hard pressed to know anything was done. Six weeks after the SBRT we went on a two week SCUBA trip. To date I have no ED, no GI or GU side effects.

My PSA reached a nadir of 0.09 while on Orgovyx, and has been steady around 0.62 since finishing the ADT. With radiation your PSA will not reach zero, and it can take 18-36 months to reach a (non-ADT) nadir. The nadir while on ADT is considered the nadir for the biochemical recurrence calculation of "nadir +2.0". However, both my RO and Urologist state that yes, the nadir while on ADT is essentially an artificially low value. So far my RO is thrilled with the results.
Stay Stong Brother, We Got This

REPLY

What makes me think you should look at one more option Is that your Gleeson 3+4 only 5% . I know where you can get some advice on this. You are so close to going on act surveillance it would be worth talking to somebody who has similar number of cores but has been able to live a normal life without doing anything?

If you go to Ancan.org You can sign up for their Active surveillance group. They have a meeting on the seventh at 8 PM Eastern time. You may have to install some new software, but it’s easy to use. The guy running the meeting has a high number of cores so you can discuss it with him. That will be other people that are in Similar situations. They can give you ideas on what would be the best treatment as well.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.


If you do just have radiation with CyberKnife using the SpaceOAR, it Can save your rectum from damage the other issues occur with the bladder. The SBRT frequently causes urinary issues after the radiation, flomax is a frequent friend, for a while.

Did They find it in the seminal vesicles? That is a real serious problem, Just wanted to make sure it’s not there.

REPLY

"Having trouble deciding on treatment. I have been told it’s like pick your poison."

Yes, you can look at it that way (and we all do some days), but it's just as much "pick your antodote." It's remarkable the we have so many good treatment options these days.

REPLY
@brianjarvis

When I had very similar numbers (65y; 3+3 & 3+4; no cribriform pattern, PNI, SVI, ECE, or intraductal carcinoma); had CT, MRI, and bone scans: no indication of spread; for me quality-of-life was equal priority with successful treatment for such low-grade disease.

Similarly, I made the personal choice against active surveillance. (What reasons did they give you for recommending against active surveillance with < 5% of 4?)

I used SpaceOAR Vue (more advanced than regular SpaceOAR Hydrogel).

However, I chose 28 proton radiation treatments over 5 SBRT treatments. (I had treatments during April-May 2022.)

SBRT is a great option with a history of successful results. But, I opted for lower doses each session to lessen the possibility of urinary bother. (Plus proton’s Bragg-Peak characteristic was technically and scientifically appealing to me.)

I didn’t view it as “pick your poison” rather as choosing from a number of good options one that best fit all the priorities that I was looking for.

If you’re a candidate, there are no wrong choices when it comes to radiation technologies these days - you have many good ones to choose from, including SBRT.

Once you’ve decided and settled on all of your priorities, you’ll have no trouble making the decision on a good treatment that’s best for you.

(In my case, right before starting proton radiation treatment, a 2nd opinion came back as 4+3. Not knowing which was “right,” we added 6 months of Eligard to my treatment regimen.)

Jump to this post

Thanks so much for your comments.

Basically they said a 7 put you in the treatment protocol vs AS. I had a urologist oncologist consult and he agreed with treatment.

I will ask the urologist and radiologist the benefit for toxicity of the IMRT multiple treatments at a lower dose. I have read they from others also.

I do worry about the all 12 positive. I have not heard of anyone else with 12 of 12. I believe the surgeon said that lessons the chance of nerve sparing.

REPLY
@jeffmarc

What makes me think you should look at one more option Is that your Gleeson 3+4 only 5% . I know where you can get some advice on this. You are so close to going on act surveillance it would be worth talking to somebody who has similar number of cores but has been able to live a normal life without doing anything?

If you go to Ancan.org You can sign up for their Active surveillance group. They have a meeting on the seventh at 8 PM Eastern time. You may have to install some new software, but it’s easy to use. The guy running the meeting has a high number of cores so you can discuss it with him. That will be other people that are in Similar situations. They can give you ideas on what would be the best treatment as well.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.


If you do just have radiation with CyberKnife using the SpaceOAR, it Can save your rectum from damage the other issues occur with the bladder. The SBRT frequently causes urinary issues after the radiation, flomax is a frequent friend, for a while.

Did They find it in the seminal vesicles? That is a real serious problem, Just wanted to make sure it’s not there.

Jump to this post

Jeff. Thanks so much.

Not sure if the seminal vesicles. The only thing I saw was a Partin Probablikty chart where it listed 2% which assume means < 2% chance it escaped. I did not have a decipher or PET or bone scan.

Would you recommend some of all of those?

I think they have a standard protocol of > 7 = treatment. I have read some suggest getting a second read on the samples especially the 3+4 = 7. But again with 12 or 12 positive I wonder if I should be conservative.

Can they send the samples to another lab? This was read by the Urology Groups own pathologist.

REPLY
@brianjarvis

When I had very similar numbers (65y; 3+3 & 3+4; no cribriform pattern, PNI, SVI, ECE, or intraductal carcinoma); had CT, MRI, and bone scans: no indication of spread; for me quality-of-life was equal priority with successful treatment for such low-grade disease.

Similarly, I made the personal choice against active surveillance. (What reasons did they give you for recommending against active surveillance with < 5% of 4?)

I used SpaceOAR Vue (more advanced than regular SpaceOAR Hydrogel).

However, I chose 28 proton radiation treatments over 5 SBRT treatments. (I had treatments during April-May 2022.)

SBRT is a great option with a history of successful results. But, I opted for lower doses each session to lessen the possibility of urinary bother. (Plus proton’s Bragg-Peak characteristic was technically and scientifically appealing to me.)

I didn’t view it as “pick your poison” rather as choosing from a number of good options one that best fit all the priorities that I was looking for.

If you’re a candidate, there are no wrong choices when it comes to radiation technologies these days - you have many good ones to choose from, including SBRT.

Once you’ve decided and settled on all of your priorities, you’ll have no trouble making the decision on a good treatment that’s best for you.

(In my case, right before starting proton radiation treatment, a 2nd opinion came back as 4+3. Not knowing which was “right,” we added 6 months of Eligard to my treatment regimen.)

Jump to this post

Brian. Thanks so much.

How long did you stay on AS before treatment.

What indicated it was time for treatment?

REPLY
@jaygk

Jeff. Thanks so much.

Not sure if the seminal vesicles. The only thing I saw was a Partin Probablikty chart where it listed 2% which assume means < 2% chance it escaped. I did not have a decipher or PET or bone scan.

Would you recommend some of all of those?

I think they have a standard protocol of > 7 = treatment. I have read some suggest getting a second read on the samples especially the 3+4 = 7. But again with 12 or 12 positive I wonder if I should be conservative.

Can they send the samples to another lab? This was read by the Urology Groups own pathologist.

Jump to this post

A decipher test would be VERY useful. It tells you the probability of reoccurrence, if the number is really low you don’t need to hurry. You really would benefit from going to that Ancan.org group. You would learn an awful lot. A decipher test would be very important at your cancer level.

If you want a second opinion,they send the slides they used to determine your Gleason score and Other findings. There is a doctor in New York who is a specialist in prostate cancer Pathology. I think he charges $450 and insurance doesn’t pay for it. You do want somebody who is a specialist in prostate cancer if you can get them through your insurance carrier.

Dr. Jonathan Epstein pathologist biopsy review
https://advanceduropathology.com/consultation/
When I had my First biopsy that showed cancer I got the slides from Kaiser and took them over to a pathologist friend to review, for a second opinion. That was a real story. On the way down a two lane Street near my house I got stopped for speeding. Up walks this burly looking cop, it Turned out it was a woman. She asked me why I was in such a hurry and I said, “well I was a little freaked out because I had these slides with me showing I had prostate cancer, I just wanted to get them home.” Of course she wants to check my drivers license, but, she comes back to the car and says watch it, and lets me drive off. Whew….

REPLY
@jaygk

Thanks so much for your comments.

Basically they said a 7 put you in the treatment protocol vs AS. I had a urologist oncologist consult and he agreed with treatment.

I will ask the urologist and radiologist the benefit for toxicity of the IMRT multiple treatments at a lower dose. I have read they from others also.

I do worry about the all 12 positive. I have not heard of anyone else with 12 of 12. I believe the surgeon said that lessons the chance of nerve sparing.

Jump to this post

Yes, according to the NCCN guidelines, a 3+4=7 can put you in the protocol for AS….as long as there are no other risk factors identified:
> PSA
> % Free PSA
> PSA Doubling Time
> PSA Density
> other MRI issues
> other biopsy issues
> biomarker (genomic) test results
> genetic (germline) test results

If they’ll do a PSMA PET scan, that would help in making the AS decision.

Regarding your 11 Gleason 3+3=6s. There’s some debate in the medical community as to whether a G6 should even be called cancer (since a “3” structure cell can’t metastasize) and therefore shouldn’t be considered as a G7+. (That a 6(3+3) is a harmless benign tumor - that it shouldn’t necessarily be treated.) With a Gleason 6, they’ll usually recommend active surveillance, unless you have other known risk factors.

As for nerve-sparing as a treatment consideration, surgery ranked dead last in my choices when I was considering quality-of-life being equal priority with success.

REPLY

Jeff. I did watch the video and
it has me considering AS. I will ask for a decipher and second opinion in the slides. Do they keep the slide or return them?

I am a T1 c and Dr Walsh’s book’s AS table said maybe AS if the 7 is less than 50% of the 4 ( mine is). But then says if less than 50% of the cores. And mine was 100%. So not sure.

REPLY
Please sign in or register to post a reply.