Cyberknife Treatment--Side Effects

jmadison
jmadison Member Posts: 5
edited March 2014 in Prostate Cancer #1
I am interesting in hearing from anyone who has had Cyberknife treatment for PC. Particularly any short term/long term side effects. Is this considered a nerve-sparing treatment? What about bowel and urinary side effects?

Thanks!
«13456

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    CK Side Effects
    Welcome to the forum. I had CyberKnife treatment in June and have had zero side effects. After CK, some men (about 4%) experience a mild degree of bowel toxicity (they have loose stools) and urinary urgency (they feel like they have to go to the toilet frequently). Both of these symptoms tend to pass within a few days or weeks of treatment. Urinary urgency can be treated with Flomax or in mild cases, Advil.

    "Nerve sparing" is not really a term used with CyberKnife. I assume you're wondering if you can still have sex afterward. The nerves really don't come into play with CK, although very long term effects of SBRT on the nerve bundles that encase the prostate is unknown, other forms of radiation frequently have the effect of damaging these nerve bundles several months to years after being irradiated. They typical radiation dose pattern for the prostate using CK avoids concentrating radiation dosages at or near the nerve bundles, but since it is an external source of radiation there is some exposure as the entire prostate is radiated. Over 85% of men with no ED issues before treatment have no ED issues after treatment. Of all forms of radiation used to treat prostate cancer, SBRT (which CK is one method of delivery) has the least amount of side effects. Age, of course, also affects the level of potency. The good news is that even if there is a decrease in potency as a long term side effect of radiation, it is a condition easily corrected by Viagra like drugs.

    If you scroll through two or three pages of posts you will see several threads (some have sparked heated debates) pertaining to CyberKnife that pretty much plumb the depths of the pros, cons, and technical aspects of this treatment protocol. I would suggest you read the previous posts and I'm sure any of the men who have undergone this treatment would be happy to address any further technical questions you might have.

    As you may know, CK is pretty much for low risk prostate cancer and is not appropriate for intermediate or advanced stages.

    Best to you.

    =====================

    Diagnosed in March 2010 at age 59 with an elevated PSA of 4.3. Biopsy revealed 1 of 12 cores positive with 15% involvement. Gleason 3+3=6. Confirmed with second pathology reading. DRE negative. No physical symptoms and no family history of prostate cancer.

    Treatment: 5 fractions of SBRT using CyberKnife. No side effects. 3 month PSA level was 1.3.
  • YTW
    YTW Member Posts: 67
    CK side effects
    I completed my CK treatment in August. Unlike Kongo, I had a few (minor) side effects. After my 3rd treatment, I had heavy urgancy to urinate that lasted about a week and began to subside. My URO prescribed Flomax and after about 3 weeks, the problem cleared up. If you decide on CK, I would advise asking your URO for Flomax and begin taking it BEFORE treatment.
    Another problem was very loose stools but by taking Gasex and Immodiam, the problem was solved. I am now a bit past 3 months post CK and have virtually zero problems. By the way, my age is 71 and in otherwise, good health......Best of luck........Jimmy/Cleveland..........
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    No Major Side Effects Here
    I had CK treatment almost 3 months ago now and I too had some urgency issues (and still do) but I did/do not consider it a major problem. No ED or any other problems.

    I had a problem w/urinary frequency before treatment which led to the discovery of my PCa. The frequency problem continued and I also developed a minor urgency problem following treatment. I was took Hytrin (major headaches), Ditropan (no apparent effect) and Flomax (dried up my ejaculate, which is a known side effect of Flomax) before treatment to control frequency but stopped taking all of them in lieu of taking saw palmetto extract, both before and after treatment, which has controlled the frequency and urgency problems to my satisfaction.

    I'm due to take my 1st PSA follow-up test tomorrow and will report the results here as soon as I get them.
  • jmadison
    jmadison Member Posts: 5

    No Major Side Effects Here
    I had CK treatment almost 3 months ago now and I too had some urgency issues (and still do) but I did/do not consider it a major problem. No ED or any other problems.

    I had a problem w/urinary frequency before treatment which led to the discovery of my PCa. The frequency problem continued and I also developed a minor urgency problem following treatment. I was took Hytrin (major headaches), Ditropan (no apparent effect) and Flomax (dried up my ejaculate, which is a known side effect of Flomax) before treatment to control frequency but stopped taking all of them in lieu of taking saw palmetto extract, both before and after treatment, which has controlled the frequency and urgency problems to my satisfaction.

    I'm due to take my 1st PSA follow-up test tomorrow and will report the results here as soon as I get them.

    Thanks!
    Thanks to all above who have responded. I'm taking your comments into consideration for my own decision to do CK or not.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    jmadison said:

    Thanks!
    Thanks to all above who have responded. I'm taking your comments into consideration for my own decision to do CK or not.

    Go For CK!
    You're speaking to the choir here but, if you're eligible, I highly encourage you to go for CK!

    You can troll this forum for threads (one very recent) about the substantial risks of surgery which can not only result in permanent ED (which may require a penile implant) but also MAJOR urinary and bowel dysfunction (which may require a urinary sphincter implant and/or multiple surgeries and many years to remedy). Why subject yourself to that kind of risk when it's unnecessary?

    The argument often given for surgery is that you can have radiation after surgery but can't have surgery after radiation. Frankly, that is not true. Surgery is difficult but not impossible after radiation treatment BUT surgery to remove the prostate following radiation treatment is usually unnecessary, because surgery following radiation does not achieve any a better result than simply doing followup radiation, chemo and/or hormone treatment which is what you'd have to do after a failed surgery anyway. And, don't let anyone fool you, you still have the same risk of failure (return of the cancer) after surgery as you do following radiation. Radiation does present a minor risk of acquiring a 2ndary cancer later, but if you have followup radiation after surgery, which is quite common, that risk is the same.

    There are certain situations when surgery is the best choice for treatment, but early stage Pca is not one of them. If you have early stage PCa, there is absolutely no reason to remove the prostate surgically in order to treat your PCa because CK can effectively attack the cancer with virtually no side effects and with the same prognosis for recovery as surgery. So, the choice for me was a no brainer.

    As far as I know, we've got 4 members of the CK club here currently (the 3 who have already posted here and ViperFred who doesn't post very often is another) and I'm looking forward to welcoming you as a new member.

    Good luck & best wishes!
  • bdhilton
    bdhilton Member Posts: 803 Member
    jmadison
    My 2 cents is that you explore all options available to you and make an informed decision with what you feel will work best for you....Best to you in this journey…
  • jmadison
    jmadison Member Posts: 5
    bdhilton said:

    jmadison
    My 2 cents is that you explore all options available to you and make an informed decision with what you feel will work best for you....Best to you in this journey…

    bdhilton
    Thanks for you comment. I have been exploring other options in addition to CK...proton therapy, surgery, HIFU...and considering watchful waiting.

    Best regards,
    JMadison
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    jmadison said:

    bdhilton
    Thanks for you comment. I have been exploring other options in addition to CK...proton therapy, surgery, HIFU...and considering watchful waiting.

    Best regards,
    JMadison

    Let Us Know What You Decide
    I believe that all of us who chose CK looked at all the same options you are considering nd decided that CK was the best for us.

    Of course, that may not be the case for you. So, please let us know which treatment method you choose and why. Good luck!
  • phil9200
    phil9200 Member Posts: 2
    YTW said:

    CK side effects
    I completed my CK treatment in August. Unlike Kongo, I had a few (minor) side effects. After my 3rd treatment, I had heavy urgancy to urinate that lasted about a week and began to subside. My URO prescribed Flomax and after about 3 weeks, the problem cleared up. If you decide on CK, I would advise asking your URO for Flomax and begin taking it BEFORE treatment.
    Another problem was very loose stools but by taking Gasex and Immodiam, the problem was solved. I am now a bit past 3 months post CK and have virtually zero problems. By the way, my age is 71 and in otherwise, good health......Best of luck........Jimmy/Cleveland..........

    CK Side Effects
    I'm concerned about the side effects since I had a lot of problems with urinating before I was diagnosed with Prostate Cancer. I'm worried that the cancer may be cured but the problems with urinating may get worse. I've been on Flomax for 3 years. Any thoughts? Maybe Robotic Surgery would be a better option? Thanks
  • rch
    rch Member Posts: 79
    phil9200 said:

    CK Side Effects
    I'm concerned about the side effects since I had a lot of problems with urinating before I was diagnosed with Prostate Cancer. I'm worried that the cancer may be cured but the problems with urinating may get worse. I've been on Flomax for 3 years. Any thoughts? Maybe Robotic Surgery would be a better option? Thanks

    Lower urinary tract symptoms
    Significant lower urinary tract symptoms are one of the exclusionary cretiria for Brachytherapy; but I had thought that SBRT was more precisely targeted and had no such collateral penetration. I'm glad medications are helping you, otherwise what are the other options? balloon dilatation ? TURP of radiated prostate?
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    phil9200 said:

    CK Side Effects
    I'm concerned about the side effects since I had a lot of problems with urinating before I was diagnosed with Prostate Cancer. I'm worried that the cancer may be cured but the problems with urinating may get worse. I've been on Flomax for 3 years. Any thoughts? Maybe Robotic Surgery would be a better option? Thanks

    RP is not better!
    If you're worried about urination following treatment, RP is definitely NOT better than CK or anything else for that matter.

    Of all of the currently available treatments, CK provides the most accurate method of radiation delivery with the least potential for causing the types of tissue damage that result in urination and other problems following treatment and all of the men here (including me) who have received CK report no or just minimal side effects following treatment.

    RP is at the opposite end of the scale in terms of risk and can potentially cause the MOST problems of all kinds following treatment, including extended periods of urinary incontinence and, in the worst case, the need for the implant of an artificial urinary sphincter. If you haven't seen the following article about the risks of prostate surgery, I urge you to read it before taking any action to pursue RP for treatment:

    http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects

    Good luck!
  • Kongo
    Kongo Member Posts: 1,166 Member
    phil9200 said:

    CK Side Effects
    I'm concerned about the side effects since I had a lot of problems with urinating before I was diagnosed with Prostate Cancer. I'm worried that the cancer may be cured but the problems with urinating may get worse. I've been on Flomax for 3 years. Any thoughts? Maybe Robotic Surgery would be a better option? Thanks

    Phil
    Welcome to the forum. Before anyone can give you any thoughts on your questions I think we need a bit more information about your situation such as what your cancer diagnosis is in terms of stage, Gleason Score, latest PSA, number of positive cores, and so forth. It would also be helpful to know about the urinary issue. Is it caused by BPH? If so, what is the size of your prostate? Have you taken anything besides Flomax?

    K
  • Beau2
    Beau2 Member Posts: 261
    phil9200 said:

    CK Side Effects
    I'm concerned about the side effects since I had a lot of problems with urinating before I was diagnosed with Prostate Cancer. I'm worried that the cancer may be cured but the problems with urinating may get worse. I've been on Flomax for 3 years. Any thoughts? Maybe Robotic Surgery would be a better option? Thanks

    Urinating and surgery
    Hey Phil,

    I had an enlarged prostate and had the problems of frequent urination at night (2 to 3 times per night) and very low flow (it took a loooong time to wizz ... I would stand at a public urinal at a ball game and listen to guys behind me complain).

    One of the positive side effects of the surgery was that I no longer need to get up at night and I wizz like a race horse. I did not know this would be a side effect when I chose surgery, and I am not advocating you chose surgery for this reason; however, in my case it was an unexpected positive.

    Good luck and best wishes in your fight with PCa.
  • budoinst
    budoinst Member Posts: 1
    Cyberknife Treatment-side effects
    I am a newbie and have recently completed my five sessions of Cyberknife treatment. I had a early stage issue and reviewed virtually every alternative available. Cryo was the first one aimed my way and I quickly negated that after reading about its after effects. I then reviewed 8 week radiation treatments , spoke to several individuals and decided against that also. I was set to have DaVinci surgery in mid-December 2011, but an important family issue caused me to postpone it. I then received a call from a good friend in Maryland who suggested Cyberknife. After looking into it deeply, I decided that would be the method I would use.

    Outside of being a bit tired (mainly from the voiding practices prior to treatment and two hours of driving a day), I have basically no other issues. A bit of a slower flow and a little more frequent bowel movement is all I noticed.

    So far, so good and I am initially very pleased that I made it my final choice.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    budoinst said:

    Cyberknife Treatment-side effects
    I am a newbie and have recently completed my five sessions of Cyberknife treatment. I had a early stage issue and reviewed virtually every alternative available. Cryo was the first one aimed my way and I quickly negated that after reading about its after effects. I then reviewed 8 week radiation treatments , spoke to several individuals and decided against that also. I was set to have DaVinci surgery in mid-December 2011, but an important family issue caused me to postpone it. I then received a call from a good friend in Maryland who suggested Cyberknife. After looking into it deeply, I decided that would be the method I would use.

    Outside of being a bit tired (mainly from the voiding practices prior to treatment and two hours of driving a day), I have basically no other issues. A bit of a slower flow and a little more frequent bowel movement is all I noticed.

    So far, so good and I am initially very pleased that I made it my final choice.

    Good luck!
    Welcome to the Forum.

    Sorry you need to be here w/us but I'm happy to learn that you were able to avoid surgery and chose CK to treat your cancer, like many of us here have already done.

    Let us know how you're doing as time goes on.

    Ciao!
  • Kongo
    Kongo Member Posts: 1,166 Member
    budoinst said:

    Cyberknife Treatment-side effects
    I am a newbie and have recently completed my five sessions of Cyberknife treatment. I had a early stage issue and reviewed virtually every alternative available. Cryo was the first one aimed my way and I quickly negated that after reading about its after effects. I then reviewed 8 week radiation treatments , spoke to several individuals and decided against that also. I was set to have DaVinci surgery in mid-December 2011, but an important family issue caused me to postpone it. I then received a call from a good friend in Maryland who suggested Cyberknife. After looking into it deeply, I decided that would be the method I would use.

    Outside of being a bit tired (mainly from the voiding practices prior to treatment and two hours of driving a day), I have basically no other issues. A bit of a slower flow and a little more frequent bowel movement is all I noticed.

    So far, so good and I am initially very pleased that I made it my final choice.

    Welcome to the club
    Budo, as another CK survivor I would like to welcome you to the club. I completed my CyberKnife treatments in June 2010 and have no side effects. Hope you continue to have smooth sailing.

    K
  • mrspjd
    mrspjd Member Posts: 694 Member
    budoinst said:

    Cyberknife Treatment-side effects
    I am a newbie and have recently completed my five sessions of Cyberknife treatment. I had a early stage issue and reviewed virtually every alternative available. Cryo was the first one aimed my way and I quickly negated that after reading about its after effects. I then reviewed 8 week radiation treatments , spoke to several individuals and decided against that also. I was set to have DaVinci surgery in mid-December 2011, but an important family issue caused me to postpone it. I then received a call from a good friend in Maryland who suggested Cyberknife. After looking into it deeply, I decided that would be the method I would use.

    Outside of being a bit tired (mainly from the voiding practices prior to treatment and two hours of driving a day), I have basically no other issues. A bit of a slower flow and a little more frequent bowel movement is all I noticed.

    So far, so good and I am initially very pleased that I made it my final choice.

    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
  • robert1
    robert1 Member Posts: 82
    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

    Doing the Homework
    Hello jmadison:

    Guys like us have so many choices today, but these choices are separated by whether you are a true low, intermediate or high risk patient, your age, documented cure rates and then your personal perceptions of both having cancer and treatment side effects. Some guys get through their ordeal without any side effects, but not a high percentage.

    In any event, the one truth I continue to support is that the vast majority of us have some time to make our decisions. When guys do their homework, treatment choices become much more obvious.

    Whatever your choice, I strongly recommend you work with the absolute best doctor/oncologist you can find. This is a huge factor in success or any kind.

    Best wishes,

    robert1
  • Mrs rec
    Mrs rec Member Posts: 3
    robert1 said:

    Doing the Homework
    Hello jmadison:

    Guys like us have so many choices today, but these choices are separated by whether you are a true low, intermediate or high risk patient, your age, documented cure rates and then your personal perceptions of both having cancer and treatment side effects. Some guys get through their ordeal without any side effects, but not a high percentage.

    In any event, the one truth I continue to support is that the vast majority of us have some time to make our decisions. When guys do their homework, treatment choices become much more obvious.

    Whatever your choice, I strongly recommend you work with the absolute best doctor/oncologist you can find. This is a huge factor in success or any kind.

    Best wishes,

    robert1

    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
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    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

    Try The Accuray Patient's Forum
    I had CK done in Sept 2010, a year before your husband, and have not had any such problems.

    Although not unheard of, they are very rare and I am sorry that your husband is experiencing them. The men (including me) here who have received CK treatment w/in the past year or so, have not reported any such problems.

    I suggest that you go to Accuray's (the maker of CK) Patient Forum, where there is a greater range of knowledge and experience about CK available. You an find the site here:

    http://www.cyberknife.com/Forum.aspx?g=topics&f=2586

    Please let us know here what the cause and solution are as soon as you are able.

    Good luck!