Post Cyberknife treatment update

I have posted previously regarding my decision to pursue Active Surveillance 5 years ago, some progression of the disease earlier this year, and my decision thereafter to end active surveillance and to be treated with Cyberknife.  This is an update re the treatment and aftermath to date.

Given 5 years on active surveillance, I had the luxury of time to fully study and read about all treatment options that appealed to me.  CK was an interest of mine then, but at that time there were only 2 years of published data available, and while clearly promising I would have been reluctant to bet the farm without more info.  The 5 years of active surveillance helped solve that issue.  7 years of data had been published and much more in the way of trials and studies.  While I made the rounds again regarding surgery and other forms of radiation, I was comfortable with the decision for CK.  The big issue with AS for most is the possibility of the disease progressing faster than expected and possibly missing the window during which curative treatment is possible.  I went from one positive core with a Gleason 6 to 3 positive cores with a Gleason 3+4.  Low risk to intermediate risk.  But that is exactly what I signed up for.  Enjoying the benefits of no treatment side effects until the progression of the disease was clear and the need for treatment was more obvious.  I believed that the disease could be monitored closely enough so as not to miss the window of opportunity as to successful treatment.  While there are no guarantees, it looks like that is the way things turned out. 

Getting CK treatment done locally was harder than I expected, and I was disappointed to find that the best CK unit in my state had views that were much more conservative about the use of CK than the mainstream views about CK that I had been following for years.  The local CK center did not recommend cyberknife for my Gleason 3+4, 3 of 12 cores positive, 10-15% of tissue involved, 2.5 PSA case.  Ultimately, if getting the CK treatment was not going to be convenient, I decided I might as well go to the Dr. whose treatment expertise and results were some of the easiest to verify.   So, 2 weeks with Dr. Katz in New York City were planned.

Arrangements were not hard to make.  To my pleasant surprise Blue Cross paid almost all of the cost without complaint.  Spending time in the "Chinatown" area of Flushing/Queens is not something I'd recommend, but this was a business trip after all.  I was able to talk and communicate by email with Dr. Katz and his staff to resolve any questions I had.  While not published then, he was able to discuss his 9 year data with me which was supportive of my thinking too.  I think his number of prior CK/prostate patients was around 700.  His success rate for low risk cases was about 94% per his data I think.  A favorable intermediate case like mine was around 91% per the data.  He is a proponent of using the lower 35gy dosage as opposed to 36.5gy or otherwise, believing it is just as effective as a higher dose in controlling the cancer and minimizes urinary side effects.  He also commonly administers the treatment on 5 consecutive days.

So, the first week in NYC involved the placement of the fiducials in his office on Monday.  Not comfortable, but a fairly quick procedure.  4 fiducials placed.  CT and MRI scans on Wednesday.  While computerized treatment planning using images and fiducials takes place thereafter, targeting dosage for particular areas of the prostate and surroundings, I was not needed again until the first treatment the following Monday.  The 5 treatments were administered in the morning daily, lasting about 40 minutes each, while I was lying on my back on a treatment table.  There is no discomfort, only an effort to remain still.  The machine moves around you at different angles, automatically moving its lens as the distance from you changes.  There was a repeating beep representing an xray or other type of scan about every 40 seconds, and occasionally the nearby staff person monitoring the treatment would remotely adjust the treatment table in very small increments to maintain desired targeting.  Can't really complain at all about the administration of the treatment.  Pretty quick.  Painless.  The prep involved an enema each day before treatment, and monitoring the fullness of the bladder.  Not much else for the patient.

As to symptoms, I had some fairly mild burning while urinating by Wednesday of the treatment week.  My stomach was queasy most days. (Could be Flushing NY restaurants and not CK)  I eventually had some increased frequency of urination, some sensation of reduced urine flow, some looser stools than usual.  I was bothered by hemmoroids.  All of these things came and went at somewhat different times and intervals but generally lasted 2 or 3 weeks and by 30 days post treatment were largely gone.  I have not had significant ED problems to date.  Ejaculate content changed right away - clear fluid only - and some soreness that faded away.

Generally, I am happy with how the treatment went and the lack of significant problems post treatment.  Of course, the big question will be the treatment was successful in controlling the PC and that is not knowable at this point.  I will be doing quarterly PSAs looking for a generally downward trend, having been warned that the trend may not always be smooth or constant.  True to form, my PSAs went from 2.7 before treatment, to 1.5 at 3 months out and recently rising to 2.3 at 6 months.  So, I will obviously be thinking about the PSAs and watching closely, trying to be patient and waiting for the big picture to be completed.

I am certainly a proponent of making fact based decisions as to major health issues like this.  But it should be way easier than it is.  There should be a better way to compare one option to another.  It should be easier to obtain info on particular practitioner's and facility's patient volumes and outcomes.  The medical profession should be much more helpful in sorting through options for a particular patient.  The patient shouldn't have to become an expert on every treatment option in order to make a rational treatment decision.  Having 5 or 6 specialists each tell you that their specialty is a good treatment option for you only helps with part of the decision making, and most lay patients are left absolutely alone with the challenge of picking between available options, which is an incredibly complex and constantly changing decision.   Again, there should be a better way.

That said, the help provided by forums and posters like this is absolutely invaluable.  I appreciate the time and assistance that regular posters provide to those struggling with these issues.  It certainly was a huge benefit to me! 

Best wishes to all dealing with these problems.  Do your best to understand where you are and what choices you have.  Ask whatever is on your mind, because it is you that needs to understand things.  Make the best decisions you can, and don't look back.  Go with it 100%.  

Mac

History:

Confirmed results of 7/22/10 biopsy on 8/17/10. 1 of 12 positive, with 5% of core tissue involved. Gleason of 3+3=6, PSA before biopsy 2.3; 6 mo earlier was 2.9. Nothing on DRE. Family history (father) with PC. Stage: T1c. General health good. Age 56 at diagnosis.  10/2010 elected to pursue active surveillance, or "expectant management with curative intent." The theory was to monitor the slow developing condition closely, delay the side effects of treatment, and do it without losing effective treatment options. (Quarterly PSAs, annual biopsies.) Should treatment be required was leaning toward RRP or CyberKnife.

UPDATE: March '11 PSA 2.2; June '11 PSA 2.3; 2nd biopsy June '11 was same as first with Gleason 6, 1 of 12 cores and 5% of tissue; Nov '11 PSA 2.4; March '12 PSA 2.5; July '12 PSA 2.7; third biopsy on 9/20/12 with same result - 1 of 12 cores, 5% of tissue, Gleason 6; February '13 PSA 2.3, DRE May '13 normal; Sept '13 PSA 2.5; Feb '14 PSA 2.5; Dec '14 PSA 2.3 Jan '15. NOTE: fourth biopsy showed progression witih 3 of 12 cores, 10% to 15% of tissue, and Gleason 3+4; APRIL '15: Decided to proceed with SBRT using Cyberknife, which was performed 5/18 to 5/22/15 with Dr. Alan Katz in NYC. May '15 PSA 2.7 pre treatment. After treatment PSAs: Aug '15 1.5; Dec '15 2.3.