What side effects, if any, did you have with Cyberknife?

Posted by jaygk @jaygk, May 4 1:02pm

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.

@jaygk

Brian. Thanks so much.

How long did you stay on AS before treatment.

What indicated it was time for treatment?

Jump to this post

Actually, my situation was a little more involved.

Having first heard about PSA testing when I was 40y (in 1995), I started having PSA tests as part of my annual health checkups when I was 45y, and watched my PSA slowly rise each year (1.30, 1.64, 1.79, 1.87, 2.10, 2.60, 2.70, 3.40, 4.00 & 4.20). So, it wasn’t a big shock to me in April 2012 (at 56y), that my urologist told me that my “blind” biopsy showed low-grade, localized prostate cancer: Gleason 6(3+3); an independent second opinion confirmed this.

But, since it was only a 3+3, there was no need to panic or rush to a hasty treatment decision; I had time on my side. (Note that this was well before the availability of PSMA PET scans, and PET CT scans were generally not approved for initial diagnosis. So, we were reliant on MRI, CT, and bone scan results for any indications of metastasis.)

With no medically-necessary reason to treat (and after a thorough evaluation of the data and literature), I chose AS. I was on AS for about 9 years, not only tracking PSA (every 4-7 months) and biopsy (about every 2-1/4 years), we also regularly calculated the lesser-tracked numbers (% Free PSA, PSA Doubling Time, and PSA Density), as well as obtained OncotypeDx and Prolaris biomarker (genomic) test results in order to keep my AS truly “active.”

After about 9 years on AS, my Gleason reached 7(3+4), PSA reached 7.976, and a Prolaris biomarker test indicated that I had “exceeded the threshold for active surveillance.” That was my cue to leave AS and seek active treatment.

I ultimately chose 28 sessions of proton radiation + SpaceOAR Vue. Prior to starting treatment, a 2nd opinion increased the Gleason to 7(4+3), so we added 6 months (two 3-month injections) of Eligard.

I’ve had minimal adverse quality-of-life side-effects, which was my intent with my initial choice of AS and then proton radiation treatments. Now at 4 years post-treatment, PSA hovers between 0.35-0.55. My most recent PSA test (2-1/2 months ago) was 0.478; not bad for still having a prostate.

Today, it’s as if nothing ever happened - just walked through a door, got treated (28x), and then walked out the door…..it’s practically back to the way it was before the prostate cancer journey started.

REPLY
@brianjarvis

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.

Jump to this post

Brian. Thanks. I think the only issues I may have against AS is all 12 cores positive. I think the other things you listed are N/A for me.

May request a decipher test and or PET scan. And possibly second opinion on slides. All less trouble than possible treatment side effects

REPLY
@jaygk

Brian. Thanks. I think the only issues I may have against AS is all 12 cores positive. I think the other things you listed are N/A for me.

May request a decipher test and or PET scan. And possibly second opinion on slides. All less trouble than possible treatment side effects

Jump to this post

Yes, a biomarker (genomic) test (like Decipher) and a 2nd opinion on the biopsy slides are good ideas.

A PSMA PET scan may not be approved given a 3+4=7 (and the low risk of metastasis). Never hurts to ask….

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

From my reading Gleason 3+4=7 often leads to active surveillance, while 4+3=7 often leads to stronger treatments.

The point is the cutoff for what counts as "cancer" is typically between 3 (possible pre-cancer) and 4 (possible early cancer).

With 3+4, the 3's are still most common, so it's not clear that cancer is developing too seriously yet; with 4+3 you have more cancer than pre-cancer irregular cells, and that means the cancer might be ready to start growing, though it might be very slow.

(Caveat that I'm a layperson, just getting this info from books and articles, and that there are other factors besides Gleason score).

REPLY

I'm 50 and was diagnosed in January with Gleason 7 (6/12 cores, two 3+3, four 3+4, max 20%), Decipher 0.56, T1C, PSMA negative, genomic testing negative except for unrelated MITF mutation. My urologist (and all subsequent surgeons and ROs) recommended treatment, however he did say that he would probably recommend AS instead of treatment if I was 65 instead of 50.

I really wanted some form of SBRT and even traveled to MD Anderson in Houston hoping I was a good candidate for radiation with their MRI Linac machine (smaller margins than Cyberknife so a reduced likelihood of rectal issues). Unfortunately, all three ROs I saw recommended against a short course of radiation because they thought it would worsen my existing urinary issues. The ROs at MD Anderson recommended against radiation altogether so I'm having surgery next month. Sounds like you're a good candidate for SBRT and have a solid RO, but you may want to consider getting a second opinion from an RO who uses an MRI-guided version, if that's feasible.

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

With that very low cancer load you should look into less invasive therapies, such as TulsaPro or MRI guided HIFU.
You only have 5% of the ‘4’ component in your Gleason score so why go all in with radiation? You are so close to AS, yet they are telling you that you have to take this huge leap into treatment.
I had no choice really since my cancer was so extensive - it was EASY to accept life altering treatment. But you are no way in that position!
Educate yourself on these less invasive protocols and reach out to members on the forum who’ve had them. Many had cases worse than yours and were treated successfully without surgery or radiation. Just my thoughts…
Phil

REPLY
@psychometric

I'm 50 and was diagnosed in January with Gleason 7 (6/12 cores, two 3+3, four 3+4, max 20%), Decipher 0.56, T1C, PSMA negative, genomic testing negative except for unrelated MITF mutation. My urologist (and all subsequent surgeons and ROs) recommended treatment, however he did say that he would probably recommend AS instead of treatment if I was 65 instead of 50.

I really wanted some form of SBRT and even traveled to MD Anderson in Houston hoping I was a good candidate for radiation with their MRI Linac machine (smaller margins than Cyberknife so a reduced likelihood of rectal issues). Unfortunately, all three ROs I saw recommended against a short course of radiation because they thought it would worsen my existing urinary issues. The ROs at MD Anderson recommended against radiation altogether so I'm having surgery next month. Sounds like you're a good candidate for SBRT and have a solid RO, but you may want to consider getting a second opinion from an RO who uses an MRI-guided version, if that's feasible.

Jump to this post

Psychometric. Thanks so much. Good luck for your surgery. I understand the decision.

I asked my RO about the advantages MRI guided and he downplayed them (of course they own the Cyberknife).

However. Someone suggested I watch a video and Dr Roach (couldn’t post it) and he downplays the MRI advantage. Sometimes data seems to point in different directions.

REPLY
@jaygk

Psychometric. Thanks so much. Good luck for your surgery. I understand the decision.

I asked my RO about the advantages MRI guided and he downplayed them (of course they own the Cyberknife).

However. Someone suggested I watch a video and Dr Roach (couldn’t post it) and he downplays the MRI advantage. Sometimes data seems to point in different directions.

Jump to this post

Here's video that @jaygk refers to

Radiation & Side Effects For Prostate Cancer | Mack Roach III, MD & Q+A with Mark Moyad, MD PCRI

REPLY

I had Cyber Knife for recurring prostate cancer in 2023. PSA now .08. I am 80 years old. My concern now, is weakness in the thighs and fatigue. Is this common and what can I do to regain strength? Asking for my husband, Tom

REPLY

Is he on any drugs Or injections for prostate cancer?

My brother is 79 and Also had CyberKnife. He doesn’t have any of those issues. I’ve not heard of it as a known issue from other people who’ve had it, Unless they are on a drug to manage the cancer.

REPLY
Please sign in or register to post a reply.