Mrs rec said:

Cyber knife side effects
My husband had cyber knife treatment last September 2011, with only mild side effects a week later. Now, more than 6 months later, he is having severe problems. For the last two weeks he has had pain , burning, urgency, and blood in the urine. He was prescribed an antibiotic and flomax for a week, which did not relieve his symptoms. Yesterday we back to the doctor. He did a cistscope to check his bladder, a sonogram, and urine test. He said that husband does not have an infection, and took him off of the other meds, and put him on vesicare. He said that symptoms are a result of the cyber knife surgery last September. He still has all of the symptoms, and cannot sleep because of the pain and having to constantly go to bathroom. Has anyone else had this, or have any advise ? Please let us know, as he is miserable. Thanks

Mrs rec,

Was there any resolution to yuor husband's side effects?  Having similar issues but not as severe.  Am told it will take care if itself over time but I am now almost 12 months post Ck and symptoms not improving.  

fawnsbuck1 said:

Cyberknife

Hi, I am going through Cyberknife treatment now. I am 51 and T1c. Gleason score of 3+3=6. 4 out of 12 samples positive. 3.2 Psa. I haven't had any urinary problems before treatment. My Cyberknife Doctor said there's 50% chance of having ED problems. This side effect could show up up to a year after treatment. I was told if you don't have any urinary problems before treatment you have a better chance not to have as many problems later. So far the worst part of Cyberknife is the markers being put in. But it wasn't as bad as a biopsy. Some insurance company's fight paying for this treatment but they give in. Good Luck and God Bless.

Tim

I go for my treatment tomorrow, pretty scared but reading this link has helped a lot and I am sure I am doing the right thing.  Have mets breast cancer to spine, painful as all hell.  Fingers crossed for tomorrow.  Good luck all, Tash xxx

I am scheduled for robotic surgery next week, but with all the reading i have been doing over the past few days I am not sure it is the best choice.  I moved pretty quickly on the option of robotic surgery.  when i found out about my cancer diagnosis i immediately made some calls and set up a date.  that was about 4 weeks ago.  since then i have been reading about cyber knife and am finding information that either my uro / surgeon didnt give me or it conflicts with it. 

I was told, without a doubt, that i would experience ED and incontinence issue later if i had cycber, whereas if i have the robo i will have them up front but they will most likely go away.  all this with the caveat that anyting can happen and the standard statistics.  However, in my reading about cyber i am not finding anyone who complains of ED or other issues occuring later in life.  granted, i have only come across a few blogs/posts on it from guys who had cyber 5+ years ago, but still, it makes me wonder. 

I need feedback on this guys.  no matter what option you choose, everyone guarantees it is the best but i cant find a lot of corroborating evidience to support anyone's claim.  what is the experience in the group?  what are the real life experiences of men who have had cyber?

i have a PSA of 4.6,  gleason of 7, 3+3 @ 65%, and 3+4 @ 54%, other samples at 3+3 =<10%.  I am 54 and still very active physically and sexually.  in fact i am so healthy that i was supprised to find that anything was wrong with me at all.  I dont want to borrow trouble by choosing an option based solely on a surgeon's reccomendation. 

hopeful and optimistic said:

Dear Steven

Prostate Cancer is a very slow growing disease, so it is best for the patient to do sufficient research to make atreatment choice that is the "best" based on knowledge. To this end please share the results of your biopsy and any pertinent information to include other diagnostic tests, what prompted you to get a biopsy, age, etc.  so we can provide insights for you.

The information that you have is wrong. Surgery generally has side effects at first to include but not limited to ED and Incontinence, howeverit is possible for  these side effects to be severe and last a life time.

SBRT is a new form of radiation that has been in existence about 8 years. Basically a high GY(dose) is given at each session to a total of 4 or 5 sessions on high tech machines, the Cyberknife machine is the most used now, however there are other machines that deliver the dose such as Novalis. The accuracy of these machines are very precise and may be an improvement over radiation such as IMRT where there are 40 sessions. A man can go about his daily activity after each SBRT treatment. It is not true that one will alway suffer side effects of ED and Incontinence, in fact the numbers are better than surgery, however with Cyberknife quite often there is no semen with intercourse.

 

I had an elevated PSA about 3 years ago on a physical, 4.32.  Last year it was significantly lower at 3.4 so my Dr said it was probably just an infection that has cleared itself up.  anyway, my company has a great insurance plan and they encourage us to get a physical every year.  They offier the office visit at no co-pay or deductible and cover most of the lab work.  I went for one about 6 weeks ago and had my doc run the full gamut of tests.  The PSA came back at 4.6 this time round.  Again he suspected an infection since I am not in any way symptomatic of any issues - he says i am healthier than he is.  He mentioned taking an anitbiotic or going to a urologist just to be sure.  I opted for the uro and sure enough the biopsy came back positive for PC. 

The uro is not a surgeon but immediately recommended i look into the robotic surgery which he described as the best option for a man my age and in my condition.  I am 54, i exercise (sometimes), bike ride, scuba dive; i have a low carb diet and am in pretty good condition.  I still have an active sex life and hope to live out more years than i deserve. 

i sought out a uro that does the robo in Chattanooga.  he went over the procedure and described the side effects as well as the issue i would deal with during recovery.  when i asked about other options such as cryo and cyberknife he cautioned me against them saying that men who have the radiation treatments suffer issues later in life because of the tissue damage done by the treatments.  he told me that i would have to deal with the same issues following robo but they would be immediate and i would recover from them, whereas the other options presented side effects later that tended to be more permanent. 

To make a long story short, i kinda feel like he is more interested in paying for his investment in the machine than he is in getting me factual info on the options.  while i believe he wants me to heal and be cancer free, he is willing to convince me to use his method even though i might prefer another if i knew enough about it.  that is my goal here, to learn more about the cyber.  what are the side effects experienced by actual patients 5 years or more down the road?  i dont want to deal with the healing process and side effects of robo if i dont have to, but i dont want my balls to fall off later in life either.

stevenkimbell said:

how i got here

I had an elevated PSA about 3 years ago on a physical, 4.32.  Last year it was significantly lower at 3.4 so my Dr said it was probably just an infection that has cleared itself up.  anyway, my company has a great insurance plan and they encourage us to get a physical every year.  They offier the office visit at no co-pay or deductible and cover most of the lab work.  I went for one about 6 weeks ago and had my doc run the full gamut of tests.  The PSA came back at 4.6 this time round.  Again he suspected an infection since I am not in any way symptomatic of any issues - he says i am healthier than he is.  He mentioned taking an anitbiotic or going to a urologist just to be sure.  I opted for the uro and sure enough the biopsy came back positive for PC. 

The uro is not a surgeon but immediately recommended i look into the robotic surgery which he described as the best option for a man my age and in my condition.  I am 54, i exercise (sometimes), bike ride, scuba dive; i have a low carb diet and am in pretty good condition.  I still have an active sex life and hope to live out more years than i deserve. 

i sought out a uro that does the robo in Chattanooga.  he went over the procedure and described the side effects as well as the issue i would deal with during recovery.  when i asked about other options such as cryo and cyberknife he cautioned me against them saying that men who have the radiation treatments suffer issues later in life because of the tissue damage done by the treatments.  he told me that i would have to deal with the same issues following robo but they would be immediate and i would recover from them, whereas the other options presented side effects later that tended to be more permanent. 

To make a long story short, i kinda feel like he is more interested in paying for his investment in the machine than he is in getting me factual info on the options.  while i believe he wants me to heal and be cancer free, he is willing to convince me to use his method even though i might prefer another if i knew enough about it.  that is my goal here, to learn more about the cyber.  what are the side effects experienced by actual patients 5 years or more down the road?  i dont want to deal with the healing process and side effects of robo if i dont have to, but i dont want my balls to fall off later in life either.

Steven,

Hi and welcome to our forum. I started to send a message several times yesterday and got delayed. I see you mention Chattanooga. I live just up the road in Cleveland TN and would be more than happy to meet with you or talk with you via the phone.

I had robotic surgery at age 54 (four years ago). Each person has there own preferences for treatment since that is what they experienced. If you decide to go Robotic look for a Doctor that has a great level of experience. Four years ago I could not find any one in the Chattanooga area with what I considered fast experience with the robot. It does have a large learning curve to become very precise and profecienet with the robot. I chose Dr. Smith at Vanderbilt in Nashville.

Post surgery I had a positive margin and have been monitored closely since surgery on the PSA. In August this year my psa was at .3 so elected to have what is called salvage radiation to the prostate bed. I have two more sessions to go of 38.

Even though I had a positive margin I still consider my surgery a success. I had no issues with urine control. I do use Levitra and am able to still enjoy the sexual side of life.

I looked into the cyberknife option four years ago. At that time they would not treat a gleason 7. I do not know if that is true or not today. At that time the closest cyperknife was up in Knoxville TN.

Again if you would like to chat in person or via phone just let me know. This forum has an email feature you can contact me through that method. Or I'm free most days after 5pm and would be willing to meet you somewhere.

Lewvino In cleveland TN

hopeful and optimistic said:

Dear Larry,

Now Gleason 7 and above are routine being treated with SBRT. For the most part containment in the prostate is critical to treatment. For more aggressive cancers SBRT uses greater margins.

Thanks for sharing Hopeful and opt. I did not know that. Was just going on what I had been told 4 years ago.

Lewvino

lewvino said:

I would assume since the

I would assume since the Cyper Knife beam is directed at the prostate that the nerves would also receive some radiation. The nerves that contol erections are in a thin layer that surrond the prostate.

 

also was good to chat with you on the phone today.

 

lewvino

Here is a 6 year study that is informative

cancer: disease control and quality of life at 6 years

Alan J Katz, Michael Santoro, Fred Diblasio and Richard Ashley

For all author emails, please log on.

Radiation Oncology 2013, 8:118 doi:10.1186/1748-717X-8-118

Published: 13 May 2013

Abstract (provisional)

Background

Stereotactic body radiotherapy (SBRT) may yield disease control for prostate cancer in a brief, hypofractionated treatment regimen without increasing treatment toxicity. Our report presents a 6-year update from 304 low- (n = 211), intermediate- (n = 81), and high-risk (n = 12) prostate cancer patients who received CyberKnife SBRT.

Methods

The median PSA at presentation was 5.8 ng/ml. Fifty-seven patients received neoadjuvant hormonal therapy for up to one year. The first 50 patients received a total dose of 35 Gy in 5 fractions of 7 Gy. The subsequent 254 patients received a total dose of 36.25 Gy in 5 fractions of 7.25 Gy. Toxicity was assessed with the Expanded Prostate Cancer Index Composite questionnaire and the Radiation Therapy Oncology Group urinary and rectal toxicity scale. Biochemical failure was assessed using the nadir + 2 definition.

Results

No patients experienced Grade III or IV acute complications. Fewer than 5% of patients experienced any acute Grade II urinary or rectal toxicities. Late urinary Grade II complications were observed in 4% of patients treated to 35 Gy and 9% of patients treated to 36.25 Gy. Five (2%) late Grade III urinary toxicities occurred in patients who were treated with 36.25 Gy. Late Grade II rectal complications were observed in 2% of patients treated to 35 Gy and 5% of patients treated to 36.25 Gy. Bowel and urinary quality of life (QOL) scores initially decreased, but later returned to baseline values. An overall decrease of 20% in the sexual QOL score was observed. QOL in each domain was not differentially affected by dose. For patients that were potent prior to treatment, 75% stated that they remained sexually potent. Actuarial 5-year biochemical recurrence-free survival was 97% for low-risk, 90.7% for intermediate-risk, and 74.1% for high-risk patients. PSA fell to a median of 0.12 ng/ml at 5 years; dose did not influence median PSA levels.

Conclusions

In this large series with long-term follow-up, we found excellent biochemical control rates and low and acceptable toxicity, outcomes consistent with those reported for from high dose rate brachytherapy (HDR BT). Provided that measures are taken to account for prostate motion, SBRT's distinct advantages over HDR BT include its noninvasiveness and delivery to patients without anesthesia or hospitalization.

mrspjd said:

Bud,
Welcome to the PCa forum and congrats on completing your SBRT tx by CK. It must be a relief to be looking at that in the rear view mirror!

Most CSN newcomers (patients and patient advocates) are encouraged to share their or their loved one’s PCa history. I invite you to consider sharing yours. Doing so helps others better understand your PCa stats, tumor staging/risk level, tx decision process/choice and journey. This info may include facts such as age @ PCa dx, PSA history, factors leading to biopsy, biopsy results including % of involved cores/cancer volume, prostate volume, and any 2nd opinion pathology results/reports obtained from a lab specializing in analyzing PCa biopsy specimen slides. In your case, it might be informative to understand which CK protocol and dosing was used for your tx, i.e. consecutive day vs alternate day, total Gy and # of fractions delivered. You may also wish to clarify your statement “Outside of being a bit tired (mainly from the voiding practices prior to treatment…)” Perhaps your CK treatment required a bowel cleanse prior to each session?

As I’m sure you’re aware, a growing number of patients, advocates, medical professionals and physicians in the PCa community believe that AS/AM (active surveillance/active monitoring) is a very viable and appropriate plan of action for men dx’d with low - moderate risk PCa. Of course, choices related to PCa are always a highly personal decision.

Good luck on your journey.

mrs pjd

recently diagnosed with very low risk prostate cancer. psa 6.3, Gleason 6 and found in 2 of 12 cores (5% and 7%). Exploring all options....so confused. urologist suggest surgery, friends suggest Cyberknife and another doc standard radiation....any input would help

Kongo said:

Choices

Steve,

 

Welcome to the forum although I am sorry you are here.  I had CK in 2010 and still am free from any side effects.  Your urologist, in my opinion, has given you misleading and slanted information about modern radiation techniques and understated the potential risks associated with RP.  I have posted dozens of times about my experiences and the technical aspects of the CyberKnife SBRT treatment method and you may find it useful to look back in the history of this forum to see some of these.  

Discussions about the best treatment method are often heated and emotional but that is usually a factor of men being passionate about their treatment choices.  There really aren't any do-overs in this so be very careful about the choice you eventually pick and make sure you are going in with your eyes wide open.

I strongly encourage you to deal directly with a radiation oncologist that specializes in CyberKnife treatment to see if this might be an option for you and to get another opinion on potential side effects.  There are several studies that you can peruse but a consultation with a specialist is the best way for a layman to get information.  Of course, radiation oncologists are biased toward their speciality just as robotic surgeons are biased toward thier own process.  You really need to listen to all of them to get a clear picture.

Every treatment option poses risk to your quality of life.  In my lay opinion, CK poses less risk than any other option and that is why I chose it.  I'm very happy that I did.  I also think that RP poses one of the highest risks to future quality of life.  Scroll back and read some of the stories and judge for yourself where the risks are.

Good luck.

K

Hi guys/Kongo,

I’m new here so forgive my Naivety. just came across this site today from a friend, just in the middle of the ball park game, after having A 3D MRI and MULTI MAPPING Perineum BIOPSY still waiting for results, but as of yet i was told after the ULCH in London had seen my MRI that i had LOW RISK LOCALISED Cancer and that they would know better after the biopsy how to go forward with treatment options. Came across this Cyberknfe and am pinning my hopes on it, as i was initially swayed towards Radiotherapy against the Surgery for all the reason highlighted here, but was a little put off with the possible severe side effects of colon cancer with the radiotherapy they use. But then read about the advances with CYBERKNIFE. Still taking on board all posts and help. And will definitely check out  the doctors  credentials and second opinions, as my GP said this is why you ‘sign a consent form’ to acknowledge that you know what you are signing for. Any further thought on CYBERKNIFE would be welcomed.

hopeful and optimistic said:

 Here is a 6 year study that

 

Here is a 6 year study that is informative

 

cancer: disease control and quality of life at 6 years

Alan J Katz, Michael Santoro, Fred Diblasio and Richard Ashley

For all author emails, please log on.

Radiation Oncology 2013, 8:118 doi:10.1186/1748-717X-8-118

Published: 13 May 2013

Abstract (provisional)

Background

Stereotactic body radiotherapy (SBRT) may yield disease control for prostate cancer in a brief, hypofractionated treatment regimen without increasing treatment toxicity. Our report presents a 6-year update from 304 low- (n = 211), intermediate- (n = 81), and high-risk (n = 12) prostate cancer patients who received CyberKnife SBRT.

Methods

The median PSA at presentation was 5.8 ng/ml. Fifty-seven patients received neoadjuvant hormonal therapy for up to one year. The first 50 patients received a total dose of 35 Gy in 5 fractions of 7 Gy. The subsequent 254 patients received a total dose of 36.25 Gy in 5 fractions of 7.25 Gy. Toxicity was assessed with the Expanded Prostate Cancer Index Composite questionnaire and the Radiation Therapy Oncology Group urinary and rectal toxicity scale. Biochemical failure was assessed using the nadir + 2 definition.

Results

No patients experienced Grade III or IV acute complications. Fewer than 5% of patients experienced any acute Grade II urinary or rectal toxicities. Late urinary Grade II complications were observed in 4% of patients treated to 35 Gy and 9% of patients treated to 36.25 Gy. Five (2%) late Grade III urinary toxicities occurred in patients who were treated with 36.25 Gy. Late Grade II rectal complications were observed in 2% of patients treated to 35 Gy and 5% of patients treated to 36.25 Gy. Bowel and urinary quality of life (QOL) scores initially decreased, but later returned to baseline values. An overall decrease of 20% in the sexual QOL score was observed. QOL in each domain was not differentially affected by dose. For patients that were potent prior to treatment, 75% stated that they remained sexually potent. Actuarial 5-year biochemical recurrence-free survival was 97% for low-risk, 90.7% for intermediate-risk, and 74.1% for high-risk patients. PSA fell to a median of 0.12 ng/ml at 5 years; dose did not influence median PSA levels.

Conclusions

In this large series with long-term follow-up, we found excellent biochemical control rates and low and acceptable toxicity, outcomes consistent with those reported for from high dose rate brachytherapy (HDR BT). Provided that measures are taken to account for prostate motion, SBRT's distinct advantages over HDR BT include its noninvasiveness and delivery to patients without anesthesia or hospitalization.

 

I was treated by Dr. Katz , a Dr. in the study linked by hopeful and opt....18 months ago . The entire C/K procedure was mundane with nothing of note , except bring your own music cd to listen to during treatment ,  theirs sucked , in fact I let them keep mine and the tech guy was appreciative .

Also , I was a big baby during the perineal implants and got scared of the needles , the whole thing took 5 minutes and no big deal .

After effects were trouble peeing for a few days due to prostate swelling due to the fact that I didn't listen to Dr. Katz who told me to take extra anti inflammatories during treatment , but that went away in a day or two .

Also , not diareah but "looseness" for about a week or so , no big deal .

In fact , overall no big deal .

Dont go just anywhere , use a quality RO - even Dr. Samadi , the reknowned NY Prostate surgeon who prefers surgery to radiation , cautions to use a good surgeon if you go that way , research your RO before using one , Dr. Katz for example is a C/K innovator with 500-600 cases worth of experience and a success rate of 97% low risk and above 90% intermediate with low side effects . He uses advanced targeting technique that all C/K RO's dont use , so shop around . 

No L/T effects so far after 1 1/2 yr .