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Cyberknife Treatment--Side Effects

jmadison
Posts: 5
Joined: Nov 2010

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!

hopeful and opt...
Posts: 1749
Joined: Apr 2009

For some reason, I did not notice the information that you posted about the biopsy?

Consider having a second opinion of the slides of the biopsy by a world class pathologist who specializes in prostate cancer since determining gleason is subjective.

Did you have an MRI or other diagnostic test to have an indication of extracapsular extension? Steven, It's important to know if the cancer is localized, that is within the prostate or in addition outside the prostate. This will be a determining factor for treatment

;;;;;;;;;;;;;;;

What are the credentials of the surgeon? Has he been fellowship trainned? How many robotic surgeries has he performed? etc, etc. There is a steep learning curve for robotic surgery....one needs to perform at least several hundred to be somewhat proficient....thousands are better.

Yes you are right, many docs are self serving.  Remember you are the CEO of your case; these docs work for you. It is important to read books, attend support groups and see multiple docs in various specialties. You need to find the best that you can in each specialty even if you have to travel to Tim buck To.

 

If you need , take a little extra time to make the right decision for you.

 

.......................

Steven, Both SBRT and Robotic Surgery are viable  treatments for men with a Gleason 7 providing that there is no extracapsular extention. Generally SBRT is 95 percent cure effective and has minimal side effects.

There were valid comments written above.

Good idea to see an experienced SBRT specialist for a consultation and visit the cyberknife web site as mentioned above.

 

P.S. Don't worry about your balls falling off ...many of us who had this happen use super glue to reattach

jose_vale
Posts: 2
Joined: Oct 2015

Thanks for the feedback. I did some research on my own, and had a few users shoot me some information. I found that alot of the "Canadian" or domestic pharmacies did ship drugs sourced in India, but I found one that I did order from. When I called the 800 number, I was able to speak to someone in Canada who answerd all questions pretty clearly. http://canadapharmacyrx.com/generic-viagra.html?ProductID=22 is the link I ordered from, just wanted to share with everyone, thank you very much for the messages and support!

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

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 opt...
Posts: 1749
Joined: Apr 2009

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.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

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

Lewvino

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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

equinox747
Posts: 1
Joined: Nov 2013

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 opt...
Posts: 1749
Joined: Apr 2009

Please repost after you receive the results from the biopsy, the paper work so we can provide input....in the event that your biopsy is positive, which ihopefully it will not be, there are various options that are available to include but not limited to SBRT(cyberknife). We will be happy to provide input at that time.

In your statement, please include age, psa history,DRE results, what led to you having a biopsy,  number of cores taken in biopsy, number positive, the gleason score of each core that was positive and the amount of involvement of each core that is positive. Also include any other diagnositic tests taken.

In the biopsy that you had, have any of the suspicious lesion found in the MRI been targeted?

Also please start a new thread. This can be done by clicking new forum topic on the upper left side of the discussion boards

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lewvino
Posts: 1007
Joined: May 2009

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

hopeful and opt...
Posts: 1749
Joined: Apr 2009

 

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.


 

waldipup
Posts: 2
Joined: Dec 2013

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 .      

 

cyberman
Posts: 1
Joined: Jan 2014

Gleason six. Two positive specimins. Diagnosed early 2013. Treated March 2013

Initially my urologist somewhat pushed his Da Vinci surgery but he also sent me to HIS radiation treatment center. They offered the 8 week treatment which I chose not to do. After him-hauling around they finally mentioned cyberknife. After a little research it was pretty much a no-brainer. Almost no side effects until now... almost 10 months later. I have been having minor discomfort after sex. Apparently the orgasm might be causing the pain. Not during but the next few days after sex. This was the first time I had this pain and it's slowly subsiding. It's not bad enough to bother me all the time so hopefully it's just a stage of healing. They say the prostate literally dies and shrinks. Little to no ejaculate so it is quite a bit different than when everything was normal. Doctor calls it "shooting blanks". Beats the alternative.

I video'd one of my sessions.... enjoy

<iframe width="560" height="315" src="//www.youtube.com/embed/q4Hp2V1iyl8" frameborder="0" allowfullscreen></iframe>

 

Well it looks like <object> and <embed>tags do not work even though the notes here say we can use them.

Here is a direct link...

http://www.youtube.com/watch?v=q4Hp2V1iyl8

jose_vale
Posts: 2
Joined: Oct 2015

I’m 65 and am about to start on prostate cancer treatments. I’m prescribed doxorubicin which is mostly affordable, but my Dr. has suggested Viagra to go with it, and I’m not making a lot of money at the moment. My Dr. also mentioned alternatives such as “generics” and his personal off the record reassurance about Canadian pharmacies as an option, which I am a little skeptical of. Has anyone every used one of these online sources, or have any experience?

Swingshiftworker
Posts: 871
Joined: Mar 2010

You may want to repost your message in a new thread rather than buried at the end of this old thread on CK which has NOTHING to do w/online pharmacies.

That said, I can tell you that there are many "good" discount pharmacies available online.  I've been using ProgressiveRx for years to buy daily dose cialis, which only costs me around 60 for a 3 month (90 pill supply) which is about 2/3rds less than what Walgreens will charge me for the same medication. 

ProgressiveRx has offices in the State of Washington but the drugs are made and shipped from Bangalore, India. Never had any problems in the shipment and/or quality of any medications received by me from them.

You can find their website here: http://www.progressiverx.com/store/

They also get good feedback on Facebook: https://www.facebook.com/ProgressiveRx

pavlograd
Posts: 2
Joined: Sep 2016

Sorry if this message is long.  After my PSA rose to about 4.5, I had a TRUS biopsy in 4/2015 that resulted in Gleason 6 in 2 cores and I was put on AS.  For next year, PSA never went above 5.5.  In April of 2016, and just before 2nd TRUS biopsy, my PSA was 4.4.  Second biopsy resulted in 5 cores positive for Gleason 6 and low agression scores on OncoDX genetic test.  URO recommended CK and I declined.  Had a 2nd opinion top oncologist at Barrett Cancer Center (at Univ of Cincinnati) tell me not to DARE kill my prostate over Gleason 6, but he recommended that I have a multi-parametric MRI to see of maybe there was something worse hiding among the Gleason 6 and explained that a TRUS biopsy is not accurate at all.  I had the mpMRI and they found a suspicious spot and then did an MRI guided biopsy on this spot and it turned out to be a 3+4 Gleason 7 about 18mm size.  Then I learned about real time MRI guided Focal Laser Ablation (You all should read about it!)  I believe it is the best treatment for me because it only burns just the cancer and leaves my prostate intact and functioning.  However, the FLA is not covered by insurance and CK is!  I am a very healthy 67 year old with 48 year old wife of 15 years and very happily married.  The FLA will cost me $20K out of my pocket and I'm trying to decide if it is worth that money to retain my prostate for hopefully another 8-10 years.  I could do the CK, insurance pay for it (I'm still working with employer insurance) and be done with it.  But, I understand that there is no long term data concerning recurrance with CK just like there isn't with FLA.  I would also like to know what you guys who have had CK feel about the chance of me being impotent.  Is sex close to the same after CK?  Does the Viagra really work (I have never tried it)?  I'm trying to decide what to do.  Doctor's have said I'm a perfect candidate for the FLA, and my URO would be more than happy to have me help his return on investment for his CK machine.  Any thoughts?

Swingshiftworker
Posts: 871
Joined: Mar 2010

FWIW, CK (SBRT) now has an over 10 year track record of effectiveness.   I was treated in Sep 2010 when some 5 year studies were just being published and I think I saw a 10 year study recently (but I'd have to look for it). 

Basically, SBRT has been found as effective in terms of remission and mortality data as other treatment modalities (including but not limited to IMRT, IGRT and surgery - both open and robotic) BUT with a much lesser incidence of delibitating side effects, which I believe is due primarily to the degree of precision with which the radiation is applied in killing the cancer. 

That precision is at the sub-mm level, can be delivered in 360 degrees and can adjust for body and organ movement on the fly by the radiation operator.  Nothing else comes close to it in terms of radiation treatment and this precision prevents unintended damage to collateral organs -- the rectum, bladder and urethra -- which is the main cause of side effects such as ED, incontenence and bleeding.

After I was treated w/CK over 6 years ago, I had some annoying and troubling PSA variability but that has gone away and my PSA has dropped below 1 (the redline for radiation treatment) and still continues to drop indicating that my cancer is in remission.  Other than the variable PSA readings, I experienced NO side effects whatsoever -- no ED, no incontience and no bleeding.  I took only 3 treatments over a week's time.  I was able to continue working during the treatments and they had no effect on my quality of life whatsoever.  A number of other men on this forum have had the same (if not better) experiences than I did.  Can't do much better than that.

I don't know much about FLA but you can't do much better than CK (SBRT) for the treatment of prostate cancer, provided that you are a qualifieid candidate for the treatment, especially if it can be paid for my your medical insurance carrier.  I'd suggest you consult w/a radiation oncologist at a facility that offers CK for a consultation to discuss it.

Good luck!

 

schin
Posts: 9
Joined: Aug 2014

This a decision that is ultimately yours to make, of course.

But I would urge you to consider CK.  CK has better long-term outcome data than FLA, I think.  And it will ablate your entire prostate, which should prevent any new areas of cancer from developing later.  If you do a focused laser ablation, you could very well develop cancer elsewhere in the organ in the future, right (honest question; I don't know much about FLA)?

I had CK for Gleason's 6 almost 2 years ago.  I had the virtually unavoidable acute side-effects such as pain with urinating and bowel movements for 2-3 weeks.  But once those routine short-term issues settled down I have had NO side-effects whatsoever.  No problems with urination, no problems with bowel movements, and I remained just as potent as I was before treatment (and never required Viagra or anything else to achieve that).  Sex is the same now as it was before, with no pills, pumps, or injections.

Like Swingshift Worker my PSA has wandered since treatment, but that is part and parcel for radiation therapy, and I am still less than 2 years out.

Bottom line is, if I were you I'd give serious thought to treating the entire gland now, so that you don't have the possibility of having to re-address this down the road.

hopeful and opt...
Posts: 1749
Joined: Apr 2009

What does your doc say about continuing with AS? 

At Johns Hopkins and some other instiutions men over age 70 continue AS with Gleason 3+4+7

Did you have a second opinion on the pathology of the biopsy by a world class pathologist.....say at Johns Hopkins....deterimining gleason is subjective, and a world class expert to review is appropriate.

 

.....................................................................................

Here is information about HIFU

http://csn.cancer.org/node/301487

..............................

SBRT aka cyberknife is around about 10 years and tracking is available for I think about 8 years.....so far very good.

Posters who have had SBRT aka cyberknife can provide specific information about the treatment.

Personally if I were to choose betweeen HIFU and SBRT, I would choose SBRT, since I wonder if current technology is advanced for best results from HIFU. However I suggest you do research about this. At the USTOO.com board there is a disscussion about HIFU, that gives a lot of detail that you may wish to read

 

 

pavlograd
Posts: 2
Joined: Sep 2016

Just wanted to say for the record that real time MRI guided focal laser ablation (FLA) is no where the same as HIFU (High Intensity Focused Ultrasound).  In FLA a fiber optic cable is carefully guided and inserted up into the center of the cancerous lesion.  The other end connects to a laser machine.  The laser is turned on and the tip of the fiber optic heats up.  The temperature is monitored and raised to about 60 degrees C and 'cooks' the cancer from inside out.  No side effects and you keep your prostate!

hopeful and opt...
Posts: 1749
Joined: Apr 2009

As I understand focal  ablation can be administered by various methods to target the cancer, hifu is one of them.

Here is a study that I just googled

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4080850/

a paragraph from this

"A number of energy sources have been investigated for focal ablation of the prostate, including cryotherapy,13 high-intensity focused ultrasound (HIFU),14 photodynamic therapy,15 and laser ablation.16"

mikedayton62
Posts: 21
Joined: Sep 2016

I was diagnosed last month, 1 core of 12 at 35%, PSA 12, Gleason 6. I have had no treatment yet, we are still deciding. My radiation oncologist said that I should consider the fact that the side effects of CK beyond 10 years are unknown, because it has only been done for 10 years so far. For that reason alone, he recommended against it.

schin
Posts: 9
Joined: Aug 2014

Well, he is right that solid data beyond 10 years does not exist.

But the data out to 10 years for cancers like yours is very good with an extremely high likelihood of cure with a low probability of any significant side-effects and virtually no interruption of your lifestyle during therapy.

I think you should talk to an RO who does CK for PCa.  Then you can make an informed decision about what choice is best for you.  Personally, I was willing to accept the uncertainty beyond 10 years because of what is known about the first 10.

 

MEtoAZ
Posts: 23
Joined: Feb 2016

The fact that this doctor says nothing is known post 10 years because the procedure doesn't have data that far back (because it is relatively new), seems like FUD to me (Fear, uncertainty and doubt).  I suspect this RO doesn't do CK.  Talk to a CK RO.  At least you will have both sides to consider and they will represent what they do fairly.  I found in my experience of doing the research that each specialist represented what they did very well and rarely were "fair" about other options, well, the conventional RO guys and urologists I visited were in alignment (and then I found out they worked for same conglomerate!).  My PCP was thankfully very neutral, if it wasn't for him I wouldn't have even found out about CK.   My CK experience, like others responding has been very positive.  Granted, my treatment was in April of this year but, everything still works with no lengthy rehab and my PSA is dropping as expected.

Swingshiftworker
Posts: 871
Joined: Mar 2010

The fact that CK has not be in use for much beyond 10 years is a really STUPID reason not to recommend the procedure, given the extraordinarily GREAT results that have been reported for the procedure for use in the NOT ONLY prostate cancer, but also brain, spine, lung, liver and pancreatic cancer as well!!!

Point in fact, the risks of CK treatment beyond 10+ years should be no different than any other radiation treatment that has been administered over that time period AND, in fact, the risks should be even less than other other methods because of the degree of accuracy achieved in the delivery of radiation by CK vs older an less precise radiation delivery methods BECAUSE the negative long term effects are mostly due to damage caused to "healthy" and non-cancerous tissue by the relevant treatment method.

Here's a link to a report by the American Cancer Society on a study done to compare the "long term" (15+ years) effects of surgery vs radiation treatment for prostate cancer: http://www.cancer.org/cancer/news/study-confirms-long-term-side-effects-from-prostate-cancer-treatment.  You can find more info like it by just Googling "long term radiation side effects prostate cancer treatment."

The report notes that the long term side effects for the treatment of prostate cancer by surgery and radiation were very similiar and were limited primarily to ED, incontinence and bowel urgency.  These are the same side effects reported by men treated for less than 5, 10 and 15 years!!  The reports of ED may have NOTHING to do w/the method of treatment because most of the men treated were over 60 when treated and would have been over 75 at the time of the study.  I think we can agree that most men over 75 will have some form of ED.  It comes with the territory. As for incontinence, that is mainly a problem caused by surgery, not radiation.  And, as for bowel urgency, that is a long term effect of OLDER forms of radiation that resulted in damage to the rectal wall due to radiation leakage during treatment.  This long term problem is much less likely with CK because of the degree of precision (not previously available) used by CK (down to the sub-mm level) to delivery radiation to the prostate.  So, I highly doubt that I (or anyone else treated with CK) in the past 10 years will experience such problems. 

Here's the point.  If, after YOU have fully reserached the method and considered it against other options, you've decided that YOU don't want to make use of the treatment, fine BUT, if you're relying solely on your RO's recommendation against it, you are being foolish.  You must take responsibility for your own treatment choices.  Doctors do NOT necessarily have your best interests in mind and you cannot rely on them for making the relevant choice. 

All of the survivors here learned that LONG AGO and our best advice to you is to make YOUR OWN DECISION!

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