Cyberknife Treatment--Side Effects
Comments
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Cyber knife side effectsSwingshiftworker said: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!
Thank you so much for your reply, I will check it out. I did read on another site of a man who was experiencing similar, but much milder symptoms. I hope that something can be done to relieve him, the doctor acted like he would just have to live with it. Thanks!0 -
Risks and patient safety re CyberKnife (aka SBRT)Mrs rec said:Cyber knife side effects
Thank you so much for your reply, I will check it out. I did read on another site of a man who was experiencing similar, but much milder symptoms. I hope that something can be done to relieve him, the doctor acted like he would just have to live with it. Thanks!
Mrs rec,
From wife to another, welcome to the CSN PCa discussion board. From reading your post, it seems that your current RO (the same doctor that provided the CyberKnife tx?) has confirmed that the painful symptoms your husband is experiencing resulted from his CK treatment. Did he say how/why this might have occurred? Apparently that RO (radiation oncologist) has been unable to provide solutions to mitigate the painful side effects/symptoms. I strongly recommend that you seek 2nd opinions ASAP from another RO as well as from a knowledgeable urologist who can do a complete evaluation to determine exactly what is causing your husband’s symptoms and provide some answers/solutions to mitigate the painful side effects.
Here’s some info that probably won’t be found on either the Accuray or CyberKnife websites about risks and patient safety re CyberKnife (aka SBRT): Last year, the respected American Society for Radiation Oncology (ASTRO) released a summary paper titled “Quality and Safety Considerations in Stereotactic Radiosurgery (SRS) and Stereotactic Body Radiation (SBRT) Therapy.” The document was commissioned by ASTRO and approved by their Board of Directors to address patient safety.
ASTRO’s executive summary paper states: “Given that very high-dose fractions of radiation are delivered, the margin of error for SRS and SBRT is significantly smaller than that of conventional radiotherapy and therefore special attention and diligence is required. A SMALL ERROR IN TARGET LOCALIZATION FOR ANY 1 FRACTION RISKS UNDER TREATMENT OF PORTIONS OF THE TUMOR BY 20% OR MORE, AND INADVERTENT OVER DOSAGE OF ADJACENT NORMAL TISSUES COULD ESCALATE THE RISK OF SERIOUS INJURY TO A MUCH GREATER DEGREE THAN AN EQUIVALENT TREATMENT ERROR IN A COURSE OF RADIOTHERAPY WHERE A SUBSTANTIALLY LOWER DOSE PER FRACTION IS USED [IG/IMRT].”
I have posted this info before and know it is not what you want to read but, without knowing more about your husband’s PCa history, stats, his clinical staging, the CK tx protocol used, dosing, the expertise & skill of his radiation team, including the radiation oncologist, the dosimetrist/physicist, the CK technician, etc., its difficult to know for certain whether your husband may have suffered permanent or temporary injury and/or collateral tissue damage from his CK/SBRT tx. I hope you find some answers soon, and that the symptoms are short term, treatable, and the pain resolves quickly.
Best of luck to you both.
M (mrs pjd)
wife of PCa survivor0 -
Cyber knife side effectsmrspjd said:Risks and patient safety re CyberKnife (aka SBRT)
Mrs rec,
From wife to another, welcome to the CSN PCa discussion board. From reading your post, it seems that your current RO (the same doctor that provided the CyberKnife tx?) has confirmed that the painful symptoms your husband is experiencing resulted from his CK treatment. Did he say how/why this might have occurred? Apparently that RO (radiation oncologist) has been unable to provide solutions to mitigate the painful side effects/symptoms. I strongly recommend that you seek 2nd opinions ASAP from another RO as well as from a knowledgeable urologist who can do a complete evaluation to determine exactly what is causing your husband’s symptoms and provide some answers/solutions to mitigate the painful side effects.
Here’s some info that probably won’t be found on either the Accuray or CyberKnife websites about risks and patient safety re CyberKnife (aka SBRT): Last year, the respected American Society for Radiation Oncology (ASTRO) released a summary paper titled “Quality and Safety Considerations in Stereotactic Radiosurgery (SRS) and Stereotactic Body Radiation (SBRT) Therapy.” The document was commissioned by ASTRO and approved by their Board of Directors to address patient safety.
ASTRO’s executive summary paper states: “Given that very high-dose fractions of radiation are delivered, the margin of error for SRS and SBRT is significantly smaller than that of conventional radiotherapy and therefore special attention and diligence is required. A SMALL ERROR IN TARGET LOCALIZATION FOR ANY 1 FRACTION RISKS UNDER TREATMENT OF PORTIONS OF THE TUMOR BY 20% OR MORE, AND INADVERTENT OVER DOSAGE OF ADJACENT NORMAL TISSUES COULD ESCALATE THE RISK OF SERIOUS INJURY TO A MUCH GREATER DEGREE THAN AN EQUIVALENT TREATMENT ERROR IN A COURSE OF RADIOTHERAPY WHERE A SUBSTANTIALLY LOWER DOSE PER FRACTION IS USED [IG/IMRT].”
I have posted this info before and know it is not what you want to read but, without knowing more about your husband’s PCa history, stats, his clinical staging, the CK tx protocol used, dosing, the expertise & skill of his radiation team, including the radiation oncologist, the dosimetrist/physicist, the CK technician, etc., its difficult to know for certain whether your husband may have suffered permanent or temporary injury and/or collateral tissue damage from his CK/SBRT tx. I hope you find some answers soon, and that the symptoms are short term, treatable, and the pain resolves quickly.
Best of luck to you both.
M (mrs pjd)
wife of PCa survivor
Mrspjd, Thank you for your information. The doctor that we saw was a urologist. After the vesicare did not work, husband was put on cortisone dose pack, which he has almost finished. His pain was so bad this morning, he was fighting back tears, and he never cries. When he took 4 ibuprofen , that helped temporarily . I need to keep a record of all the info, but right now do not have all info. The gleeson score was pretty low, and the cancer was early stage , I think it was in three of the core samples. I really appreciate your help and recommendations. I will take him to get a second opinion with a radiation oncologist ASAP . We are in north Florida, so I will try to schedule an appt at the Mayo Clinic. Also, will try to follow up on the findings from Astro. Thank you so much !0 -
HBOTMrs rec said:Cyber knife side effects
Mrspjd, Thank you for your information. The doctor that we saw was a urologist. After the vesicare did not work, husband was put on cortisone dose pack, which he has almost finished. His pain was so bad this morning, he was fighting back tears, and he never cries. When he took 4 ibuprofen , that helped temporarily . I need to keep a record of all the info, but right now do not have all info. The gleeson score was pretty low, and the cancer was early stage , I think it was in three of the core samples. I really appreciate your help and recommendations. I will take him to get a second opinion with a radiation oncologist ASAP . We are in north Florida, so I will try to schedule an appt at the Mayo Clinic. Also, will try to follow up on the findings from Astro. Thank you so much !
Mrs rec,
If a 2nd opinion consult @ Mayo Clinic confirms that your husband has suffered collateral tissue damage from CyberKnife treatments, you may wish to ask them about a type of tx called Hyperbaric Oxygen Therapy (HBOT). According to the American Cancer Society, there is “some evidence suggesting Hyperbaric Oxygen Therapy may be helpful as an extra tx for soft tissue injury caused by radiation.” Use your search engine w/ key words “Hyperbaric Oxygen Therapy + radiation” to further research this subject and to determine if it might be an appropriate therapy to mitigate your husband’s symptoms. Follow this link for more info from the ACS:
http://www.cancer.org/Treatment/TreatmentsandSideEffects/
ComplementaryandAlternativeMedicine/HerbsVitaminsandMinerals/hyperbaric-oxygen-therapy
There is a learning curve for all physicians providing txs to PCa patients—RO's providing CyberKnife tx are no exception. With CK’s aggressive marketing/advertising campaign and as one of the “newer” (not new, but newer) txs in the PCa tx arsenal, CK centers seem to be everywhere, from small clinics to large, teaching medical centers/hospitals. As a primary mono tx for low risk PCa or as a secondary tx for isolated PCa tumor mets (even newer), it is imperative for anyone considering this tx to choose a skilled and experienced CK radiation team at a medical/RT center of excellence. This is not an endorsement for CK but rather a recommendation for choosing the best of the best--an expert--for any PCa tx--especially with regard to newer txs such as Robotic RP or CK/SBRT, where the learning curve may be greater.
I encourage you to consider checking back with updates, sharing what you've learned and how you both are doing.
All the best.
M (mrs pjd)0 -
center treatedMrs 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, can you share the location of your procedure and what they say about the side effects your husband is experiencing? Would expect them to very involved.0 -
CKKongo said: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
I oomplete my treatment in late April, I had minimal side effects, but about 3 months later I was seeing small amounts of blood in my urine, and seems to happens every 3-4 weeks, I contacted the Urologist and was told this was normal, Has this happened to anyone else? I feel fine other that this.0 -
Blood in urineaj39494 said:CK
I oomplete my treatment in late April, I had minimal side effects, but about 3 months later I was seeing small amounts of blood in my urine, and seems to happens every 3-4 weeks, I contacted the Urologist and was told this was normal, Has this happened to anyone else? I feel fine other that this.
I had my CK treatment in June 2010 and although I did not experience the effects you describe my doctor also told me that small amounts of blood were not unusual and that it would gradually pass. Good luck to you.
K0 -
How long did it last? was itKongo said:Blood in urine
I had my CK treatment in June 2010 and although I did not experience the effects you describe my doctor also told me that small amounts of blood were not unusual and that it would gradually pass. Good luck to you.
K
How long did it last? was it months?0 -
CKbudoinst 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.
I had my treatments around the same time you did, did you have any issues a few months later??0 -
PC new guy
Hey Guys,
I'm glad I stumbled on this site. I am early in the journey. PSA went from 1.38 to 2.7 in a year. Positive DRE and MRI-S from a HIFU provider in FLA....2nd opinion from a Cyberknife guy in Marirtta , Ga was iffy, with a negative DRE
Followup DRE (3rd) mildly suggestive, but PSA @ 2.6, free PSA 21.2, and PCA3 46. MRI with comtrast, but NO coil, showed suspicious left side involvement. 12 core biopsy scheduled on 04/04/13.
I'm down to Cyberknife, or secondly HIFU.
Here are my CK questions :
1) anyone have experience with the CK facility in Marietta GA ?.....I think they have 100 treated cases of PC in last 3 years ith 4 failures based on PSA.
2) The head guy there blew me off when I asked about every other day treatment modality. I've read some positive data about that lessening side effects.
3) Any data on long term risk of CK related bladder/colon cancer compared to other forms of radiation therapy ??
4) The HIFU urologist I saw in FLA diagnosed me with PC based on MRI-S and DRE, and PSA Velocity. Anyone here been diagnosed without a biopsy ?
Many thanks for your thoughts, and I am a boots-on- the-ground guy in RVN, 1970-1971.
Regards to all,
BG
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WelcomeRaltrt41 said:PC new guy
Hey Guys,
I'm glad I stumbled on this site. I am early in the journey. PSA went from 1.38 to 2.7 in a year. Positive DRE and MRI-S from a HIFU provider in FLA....2nd opinion from a Cyberknife guy in Marirtta , Ga was iffy, with a negative DRE
Followup DRE (3rd) mildly suggestive, but PSA @ 2.6, free PSA 21.2, and PCA3 46. MRI with comtrast, but NO coil, showed suspicious left side involvement. 12 core biopsy scheduled on 04/04/13.
I'm down to Cyberknife, or secondly HIFU.
Here are my CK questions :
1) anyone have experience with the CK facility in Marietta GA ?.....I think they have 100 treated cases of PC in last 3 years ith 4 failures based on PSA.
2) The head guy there blew me off when I asked about every other day treatment modality. I've read some positive data about that lessening side effects.
3) Any data on long term risk of CK related bladder/colon cancer compared to other forms of radiation therapy ??
4) The HIFU urologist I saw in FLA diagnosed me with PC based on MRI-S and DRE, and PSA Velocity. Anyone here been diagnosed without a biopsy ?
Many thanks for your thoughts, and I am a boots-on- the-ground guy in RVN, 1970-1971.
Regards to all,
BG
Welcome Vietnam vet. I was boots on the ground station at Camp Eagle, with the 178th Avn Chinooks, 1st Avn Bge and 478th Avn at Da Nang with the Fying cranes.
Love them Cobra's, really when we flew our missions it was nice to have a Cobra fying around.
Rvn 1970-1971
Good luck, Have you filed with VA for Agent Orange and got compensated?
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Ralphralph.townsend1 said:Welcome
Welcome Vietnam vet. I was boots on the ground station at Camp Eagle, with the 178th Avn Chinooks, 1st Avn Bge and 478th Avn at Da Nang with the Fying cranes.
Love them Cobra's, really when we flew our missions it was nice to have a Cobra fying around.
Rvn 1970-1971
Good luck, Have you filed with VA for Agent Orange and got compensated?
I flew hooks a tour then Cobras....both in the Delta out of Can Tho........I've started the Agent Orange Fastrack but no answer yet. Although I have a written diagnosis of PC from a urologist, I'm not sure if the VA will approve a disability claim prior to my biopsy...WELCOME HOME !
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Diagnosis is based on theRaltrt41 said:PC new guy
Hey Guys,
I'm glad I stumbled on this site. I am early in the journey. PSA went from 1.38 to 2.7 in a year. Positive DRE and MRI-S from a HIFU provider in FLA....2nd opinion from a Cyberknife guy in Marirtta , Ga was iffy, with a negative DRE
Followup DRE (3rd) mildly suggestive, but PSA @ 2.6, free PSA 21.2, and PCA3 46. MRI with comtrast, but NO coil, showed suspicious left side involvement. 12 core biopsy scheduled on 04/04/13.
I'm down to Cyberknife, or secondly HIFU.
Here are my CK questions :
1) anyone have experience with the CK facility in Marietta GA ?.....I think they have 100 treated cases of PC in last 3 years ith 4 failures based on PSA.
2) The head guy there blew me off when I asked about every other day treatment modality. I've read some positive data about that lessening side effects.
3) Any data on long term risk of CK related bladder/colon cancer compared to other forms of radiation therapy ??
4) The HIFU urologist I saw in FLA diagnosed me with PC based on MRI-S and DRE, and PSA Velocity. Anyone here been diagnosed without a biopsy ?
Many thanks for your thoughts, and I am a boots-on- the-ground guy in RVN, 1970-1971.
Regards to all,
BG
Diagnosis is based on the results of the biopsy; all other information such as MRI's, PSA"s, etc are indicators only.
It's great that you are doing research, keep on going....however, a treatment choice is based on many factors,suh as Gleason score, indication of inside or outside the capsule, PSA, dre, size of your prostate, etc, etc, so picking a treatment type at this point is premature.
" The head guy there blew me off when I asked about every other day treatment modality. I've read some positive data about that lessening side effects"
There was a study , when cyberknife was developed that showed that there is less short term side effects with every other day treatment...there is also a promininent doctor now who thinks that every day in a row is fine.,.....If your final decision is sbrt, I would ask the doc to do every other day
SBRT has been in existance about 8 years so long term datra is lnon existant.
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WrittenRaltrt41 said:Ralph
I flew hooks a tour then Cobras....both in the Delta out of Can Tho........I've started the Agent Orange Fastrack but no answer yet. Although I have a written diagnosis of PC from a urologist, I'm not sure if the VA will approve a disability claim prior to my biopsy...WELCOME HOME !
If your privite Urologist said you have cancer, they should give you a 100% for PC. That is about $2,800.00 and if you are married, it more. If the cancer curable then they will lower it down after 6 months to 30-40%. They might make you do C&P with VA hospital. Fast track is maybe 12 months, but usually longer. Look at the list of condition's for AO that VA has, you might find that you have other conditions??? If you need help I will be boots on the ground at this site.
Welcome Home
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CKhopeful and optimistic said:Diagnosis is based on the
Diagnosis is based on the results of the biopsy; all other information such as MRI's, PSA"s, etc are indicators only.
It's great that you are doing research, keep on going....however, a treatment choice is based on many factors,suh as Gleason score, indication of inside or outside the capsule, PSA, dre, size of your prostate, etc, etc, so picking a treatment type at this point is premature.
" The head guy there blew me off when I asked about every other day treatment modality. I've read some positive data about that lessening side effects"
There was a study , when cyberknife was developed that showed that there is less short term side effects with every other day treatment...there is also a promininent doctor now who thinks that every day in a row is fine.,.....If your final decision is sbrt, I would ask the doc to do every other day
SBRT has been in existance about 8 years so long term datra is lnon existant.
hopeful/opt: I underwent C.K. about two 1/2 years ago at age 70. My PSA has been decreasing from 6.5 down to 1.25 about a month ago. I experianced some slight urinary & bowel problems for about a month but with the use of Flomax & Immodium, those problems have subsided. My treatments were done every other day as advised by my Radiation Oncologist. He also advised me NOT to take any anti-oxident supplements for at least a month after completeing C.K. Ther reason being that with any type of radiation its purpose is to destroy Ca cells. Anti-oxidents try to help cells survive and that includes Ca cells. I did not use any type of supplements for about 6 months. By the way, everything still works at age 73 and I mean everything Best of luck.....Jimmy/Cleveland
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Great to hear of the success of your treatmentYTW said:CK
hopeful/opt: I underwent C.K. about two 1/2 years ago at age 70. My PSA has been decreasing from 6.5 down to 1.25 about a month ago. I experianced some slight urinary & bowel problems for about a month but with the use of Flomax & Immodium, those problems have subsided. My treatments were done every other day as advised by my Radiation Oncologist. He also advised me NOT to take any anti-oxident supplements for at least a month after completeing C.K. Ther reason being that with any type of radiation its purpose is to destroy Ca cells. Anti-oxidents try to help cells survive and that includes Ca cells. I did not use any type of supplements for about 6 months. By the way, everything still works at age 73 and I mean everything Best of luck.....Jimmy/Cleveland
SBRT will be my first choice if I require active treatment and my diagnosis allows. I would ask for every other day treatment.
Thanks for the tip about anti- oxidents
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Not Sure You Have Prostate CancerRaltrt41 said:PC new guy
Hey Guys,
I'm glad I stumbled on this site. I am early in the journey. PSA went from 1.38 to 2.7 in a year. Positive DRE and MRI-S from a HIFU provider in FLA....2nd opinion from a Cyberknife guy in Marirtta , Ga was iffy, with a negative DRE
Followup DRE (3rd) mildly suggestive, but PSA @ 2.6, free PSA 21.2, and PCA3 46. MRI with comtrast, but NO coil, showed suspicious left side involvement. 12 core biopsy scheduled on 04/04/13.
I'm down to Cyberknife, or secondly HIFU.
Here are my CK questions :
1) anyone have experience with the CK facility in Marietta GA ?.....I think they have 100 treated cases of PC in last 3 years ith 4 failures based on PSA.
2) The head guy there blew me off when I asked about every other day treatment modality. I've read some positive data about that lessening side effects.
3) Any data on long term risk of CK related bladder/colon cancer compared to other forms of radiation therapy ??
4) The HIFU urologist I saw in FLA diagnosed me with PC based on MRI-S and DRE, and PSA Velocity. Anyone here been diagnosed without a biopsy ?
Many thanks for your thoughts, and I am a boots-on- the-ground guy in RVN, 1970-1971.
Regards to all,
BG
BG,
Welcome to the forum and I think you're smart to be researching potential treatment options. The first thing that struck me is that other than a rather confusing DRE test you really don't have any definite indication that PCa might be present. Your PSA is very low and the slight rise between tests over a year period could be caused by a number of factors such as sex the night before the blood draw, a DRE exam before the blood draw, certain types of exercise, or just the time of the day or the phase of the moon. PSA results have been shown to vary at different times of the day for no apparent reason but certainly orgasm or anything that puts pressure on the prostate (even a hard stool) can cause a slight elevation in PSA that lasts up to 48 hours.
I had Cyberknife in July 2010 at age 59 and have had no side effects. I did purposely ask for and received the every other day treatment based on Dr. King's initial study which showed every other day had less prostate inflammation which decreased the chances for urinary urgency.
I would be running as fast as possible away from a HIFU urologist that diagnosed you on the basis of image scanning and PSA velocity. If the two data points you listed are what he used he is trying to sell you a bill of goods...or a quickie trip to Jamacia for his HIFU procedure. The ONLY way prostate cancer can be diagnosed is through a biopsy. Everything else is just a guess.
Good luck to you.
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KongoKongo said:Not Sure You Have Prostate Cancer
BG,
Welcome to the forum and I think you're smart to be researching potential treatment options. The first thing that struck me is that other than a rather confusing DRE test you really don't have any definite indication that PCa might be present. Your PSA is very low and the slight rise between tests over a year period could be caused by a number of factors such as sex the night before the blood draw, a DRE exam before the blood draw, certain types of exercise, or just the time of the day or the phase of the moon. PSA results have been shown to vary at different times of the day for no apparent reason but certainly orgasm or anything that puts pressure on the prostate (even a hard stool) can cause a slight elevation in PSA that lasts up to 48 hours.
I had Cyberknife in July 2010 at age 59 and have had no side effects. I did purposely ask for and received the every other day treatment based on Dr. King's initial study which showed every other day had less prostate inflammation which decreased the chances for urinary urgency.
I would be running as fast as possible away from a HIFU urologist that diagnosed you on the basis of image scanning and PSA velocity. If the two data points you listed are what he used he is trying to sell you a bill of goods...or a quickie trip to Jamacia for his HIFU procedure. The ONLY way prostate cancer can be diagnosed is through a biopsy. Everything else is just a guess.
Good luck to you.
Thanks for your thoughts. I agree that I seemed to be a self funded profit center to the first HIFU/urologist I consulted.
You are correct, I do not have a biopsy-confirmed PCa diagnosis yet. I have a 12 core biopsy scheduled 4/4 for the following reasons:
1) PSA velocity....1.38--2.7 in one year
2) 2 of 4 DREs felt left hemisphere ridge
3) Free PSA 21.2%
4) PCa3...46
5) Both MRIs and color Doppler ultrasond indicated left side tumors, equivocal ECE
I wanted to avoid the biopsy because of potential needle tracking, and other known risks. However, I feel I can no longer avoid it, and need the results to make a more informed decision on treatment. CK is presently my leading choice, and I have had a consult with the CK provider in Marietta , Ga......my hardest decision will be WHERE to go for optimum CK therapy.
Thanks for your forum info,
BG
0
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