Cyber Knife

I was just diagnosed with prostate cancer on Dec 20th. I still have to get a bone and CT scan done to see if its spread.

Meanwhile it seems to me as if the doc is leaning towards the cyber knife procedures.

anyone have any experience with this?

any side effects? Long term? short term?

any hints or tips on what to expect?

By the way I am already a 2 time cancer survivor, the first was tongue caner in 2011, the second was lung cancer in 2016, you might say I'm a veteran at this cancer stuff

thanx
Ed D aka Rad Dad Bro

Hi, Ed. I'm the guy who suggested in the other thread that you start a thread specifically to ask your questions. I think it will help to focus the discussion on what you want to know.

As Allen mentioned, try to create a signature with the pertinent details of your journey thus far. That will help us to formulate opinions to share with you that are specific to your own case. We are not (AFAIK) doctors, but the folks here are some of the best-informed patients I've met.

I just finished my CyberKnife treatments 4 weeks ago today. If your doc is suggesting CyberKnife, and he has not mentioned any clinical tests (did he?), then that implies that your PCa could be in one of the lower risk categories. If so, I'm a bit confused about why he wants to do bone and CT scans, as they are usually not indicated for lower-risk cases. Maybe there is something that you didn't think important enough to mention that would explain this, again your signature data would help. The only procedures I had after the biopsy were the implantation of the Fiducials (markers for the CK machine to use for positioning), which was done with the aid of an ultrasound probe, and a CT scan with and without contrast, which was used for the actual radiation planning that "drove" my treatments.

I can't speak about long-term side effects or issues, as I'm still just a few weeks out. Perhaps Allen could address those questions, as his SBRT treatment (similar to CyberKnife, but delivered with a different brand of machine) was some years ago.

I experienced the "typical" side effects, starting at about the end of my 10-day treatment period. I had some urinary hesitancy and burning, which has been alleviated with Tamsulosin (generic Flomax). At first I had some urinary urgency, but that only lasted a week or so. No leaking, dripping, incontinence or urine retention at all. As for bowel issues, I had some that I think are rated as Grads 1 (the lowest level of severity). I had some pain on bowel movements, some rectal cramping, urgency, diarrhea, general discomfort feeling like I was sitting on a golf ball, etc. These effects lasted longer than the urinary effects and really just began to resolve about week 3. I would now label both urinary and bowel/rectal effects as very minor at 4 weeks. I did not miss even one day of work - I was able to schedule my treatments at 8:30 AM, so I was at work by around 10:30 on those days. The side effects I mentioned did not affect my ability to work (office job), and really didn't even affect my gym schedule. The only impact this has on my gym schedule now is that I have to dial back my workout intensity due to the side effects of the Flomax, which is an alpha blocker, and it lowers blood pressure and can cause elevated heart rate.

I could go on and on, but that might not answer your specific questions. If you want to know the efficacy of the SBRT mode of treatment, follow the links in Allen's signature to read some of the published studies. The story is, to me, quite compelling.

If you want to get into the pro's and con's of CyberKnife versus any other treatment, give us your biopsy specifics and your current thoughts and we can toss the ideas around with you. Or, if you have specific questions, shout them out and somebody will give you their best answers, I'm sure.

Whether you ultimately settle on CyberKnife or another treatment, the best thing you can do for yourself is to do your due diligence. Learn about any of the potential treatments that might remotely interest you. Once you've done that, you can make an informed judgment about which treatment is best for you. For many of us, there are several equally effective treatments, and we choose based upon our understanding of each treatment's side effects and how those would impact our own lives.

Sorry for the long response. Sometimes I tend to over-think these things. But at least if I do that, I am less likely to second-guess myself afterward.

Hi:

So sorry to hear of your diagnosis. But there is great hope these days with the new medications and treatments.

For what it is worth, I had SBRT on 3 bone mets and the prostate in 2011 with no side effects. 5 years later all of my CT and C-11 scans show no activity in the areas irradiated.

Tall Allen and Nomar have good advice above.

Good Luck,
Houseboy

You guys have a lot more information than I do. I'll have more accurate data after the bone and CT scans next week. I'm not going to mess with my signature until I have that additional data.

So far though, my PSA is 5.6, it had been 3.7 a year earlier, PHI results put me in a 41.88% probability of having prostate cancer. A biopsy was performed on Friday, Dec 16th, results confirmed cancer. Gleason score of 6.

Anything associating me with cancer becomes high risk. I have a history of cancers and my brother, Rad Dad, died from complications during his extended treatments.

Tall Allen - I'll be sure to ask about genetic risks

I was also exposed to Agent Orange while stationed in Thailand during the Viet Nam debacle. The VA has already recognized prostate cancer as a "presumptive" illness. That is, if you can prove you were regularly in an area where AO was used then the illness is "presumed" to have been caused by that exposure.

The reason I'm thinking cyber knife may be the proposed solution is that I told the doc 1) no surgery 2) I plan on going to Portland in February. To that he said No Problem we'll be done by then.

You beat 2 serious cancers, and you will certainly will beat this one. I do remember your brother Raddad, he was the light of the forum the time he was with us. I am sorry you have to go through another challenge, but I am sure he is looking down on you and encouraging you along the way, and is happy that you found the same group of people that helped him, as much as he inspired them. These men will take good care of you, just as they have done with your brother.

Rad Dad...sorry about your diagnosis. I would echo two things above: 1) get a second opinion of your biopsy slides to ensure you really are a Gleason 6 and 2) if you're a verified G6 think about Active Surveillance first. G6 is a low-risk cancer and AS is the only treatment that has no side effects.

Good luck and let us know how we can help.

There is a a trial with many patients which compared surgery, radiation and active surveillance: the ProtecT trial.

After ten years they could not find significant differences regarding overall survival between the treatments but the side effects of active surveillance were almost none.

Even if you are a favorable Gleason 7 I think this is the way to go for the next years at least.

George

Things went well for me. CT and bone scans clean. Lab results show 3 of 12 cores with less than 14% cancer, cancer in one side only. Decided to go with Active Surveillance and nutrition / homeopathy routine. Plan to get PSA rechecked in 3 months.

That sounds like an ideal diagnosis for AS. Is your uro leading the AS or is there a specific AS program that you're in? Lots of guys here can chime in with the their experiences in AS programs.

Akbear49 - Good luck with the homeopath, but please, please keep a close watch on your clinical statistics. If all the natural remedies were so good, wouldn't more people be using them?

I have no faith in homeopathy, but good nutrition and exercise are highly recommended by many on this Forum. Anyway, I applaud the decision to go the AS route and go from there.

woody13-

You will get more responses if you start your own thread rather than append to this old one. Just click on the button that says "+Post New Topic."