Ok, I've posted here a couple of times at different points so I should just give the basics: I'm 61, I had a nasty birthday surprise of a PSA of 8.0 last May. I went for a biopsy in Aug., came back with a 10% Gleason 3+3-6 score in 3/12 samples. Negative DRE, normal prostate volume and I have no symptoms. This probably sounds very familiar to a lot of you here-welcome to the club I/you didn't want to be part of!
A bit of background; years ago when I was young I was a surgical tech for several years and I scrubbed diagnostic/surgical urology. I left that career and now run my own company, but I've never been very far from the health-care profession with several doctors and various other practitioners as close friends. While this does not make me anything of an expert-as one of my doc friends says "it's called practicing medicine because we never perfect it.", the experience gave me a healthy dose of skepticism and the knowledge that only I can make the choice for my care. Back to that fateful day: Like everyone here upon hearing the diagnosis, the first thing I did was panic. The urologist who gave me the good news immediately wanted to rule out every other option and schedule me with a colleague for surgery as soon as he could get me in.
Uhhh...no. No? Make that Hell No!
I left the office in shock but not ready to rush into the O.R.-after all, I've scrubbed several radical prostatectomies. I had research to do first and friends to call. Everyone of my doc friends basically said slow down and learn, that I had plenty of time to decide and that I wasn't going to die the next day. It's scary, but that's what we all think, admit it or not. They also said to start with a second opinion from a top specialist. So I did. I researched like crazy and on a friend's (he's an oncologist) recommendation made an appointment with the chief of urology at the Univ. of PA in Philadelphia. Glad I did, because even though he wanted to operate (of course, that's his specialty) he was honest with me that the radiation option was very viable for me, and set me up with radiation oncology. I saw the head of radiology who confirmed that the radiation option for me would have a statistical outcome very close to surgery. More research and lots of discussions with doc friends led me to the Cyberknife option and Capital Health Systems in Trenton NJ in Nov-they are part of the Univ of PA health system-and after a wonderful visit with the team there, I knew that I was in the right place. Now I am in a trials with a urologist as my primary on this who is very interested and supportive of Cyberknife. He placed the fiducials and will do my follow-up care.
Fast forward to yesterday:
Ok, with the pain in the butt (literally) of the fiducial placements behind me (bad pun) and the C/T MRI planning phase done, yesterday was the first treatment...and it was uneventful. I arrived at 8:30 and by 9:00 was down in the Cyberknife room. I must say that the techs couldn't have been nicer and more professional. My radiation doc came in and she was very warm and reassuring. As a side note I find it a bit interesting that all but my urologist is female and at the same time I am very comforted by that-I was just used to nothing but men in urology as an O.R. tech. Times have changed and very much for the better. But on to the experience. It took a bit longer than usual to get me set up as I am 6'2". The table moves in conjunction with the Cyberknife head to keep the head aimed properly and I am pretty much at the limits. But, in the end they found the sweet spot and the system finally locked onto all four fiducials so that the treatment phase could begin. So there I was, for the next hour and a bit holding as still as I could with this thing the size of a small refrigerator dancing about me. During the treatment the table occasionally gently moved me which kind of felt like a boat rocking, but beyond that, I felt absolutely nothing. The equipment was very quiet, unlike the MRI experience. The entire process was made much more relaxing (I didn't want the drugs) because I had my Zune with me. John, Paul, George and Ringo took me through their early career with all of the energy and gusto that I remembered. Thanks, boys-you'll never know.
Home now, sitting here having coffee the next morning. Nothing feels out of the ordinary so nothing to report. Day two comes up tomorrow as I requested the every other day schedule. I am getting five treatments with a day in between to minimize side effects. My therapist says that if I get any side effects they won't show until after Monday and my 3rd treatment. They have had almost no symptoms reported in the study so far and I am #20-and I am the first patient to request the every other day schedule. They did have one patient with some very mild symptoms that didn't last very long early on in the study. The symptoms might comprise of urethral irritation in the form of feeling like the need to urinate and possibly some loose bowls. Personally I think that the extra time and care that they have taken in the planning phase plus the schedule will pay off. I was delayed a week because my radiologist just wasn't happy with the plan and insisted on starting over. That extra care and the every other day schedule should result in an optimal outcome. I truly do have the utmost confidence in this team. So now as I write this, I am in the groove, waiting for the balance of the treatments feeling comfortable, calm and confident and very glad that I did my homework before submitting to the knife.
Ok, I've now done Day Two. Only three more to go! The setup time was quicker this a.m. as the therapists and I settle into the routine, which means we started at 9:00 and between setting me up and getting the Cyberknife to lock on to the fiducials, do the treatment and kick me out, the entire thing was over by 11:30. By the way, the staff at Capital Health is to be commended. They are friendly-and not in that casual "you're here for the moment and I'd better smile." way that you sometimes get. They express a genuine concern and interest in my situation and go out of their way to make me feel comfortable. Now this isn't the end all to be all, after all it's the quality of the treatment that counts in the end, but if one can judge attention to detail by the attitude of the staff, then this group gets very high marks...and as someone who has been on the other side, I can be very critical.
So, what's Day Two feel like? Well, up a 3:00 a.m. for some unknown reason, maybe it was because I went to bed too early, but I did get tired around 3:00 p.m. for a while, but I've perked back up so it's probably the sleep schedule and not the treatment. My sleep is a bit wonky since I was under a bit of anxiety stress from starting this, but I can tell that I am over that stress after today's session and things will settle back into normal. As far as side effects go: well, the only way to describe what is going on is that I don't seem to have any obvious side effects per se, but I just seem to be more aware of the prostate region, sort of like it felt a week or two after the biopsy. You know that something was messed with, but it doesn't feel painful, sore or tender to the touch, it's just sort of there in your consciousness. Is that a vague enough description? The thing is that I was asymptomatic prior to the diagnosis so nothing really feels out of sorts. And if you are thinking of having this procedure, that's a good thing!
So Monday is Day Three, Wednesday is Day Four and Friday is Graduation Day. I think that I can do this!
Bob: I had that process two years ago. 5 days a week, by 8 weeks = 40 treatments, by 2 G = 80G total. That the IMRT radiation. Loose stools are in the beginning only - but tell your oncologist. You may fee a little tired, I did and I took afternoon naps.
No ED during the treatment, and expect your sexual function to be better after treatment (more sensitivity). But ED will eventually show up around 11-15 months later.
And of course there won't be catheter, no pain relievers, no incontinence, no wet pads,
but some hair loss. Good luck to you.
Hi, Straightguy, I realize that radiation's side effects are delayed and only time will tell the end result of what I have chosen, but I am optimistic that Cyberknife will deliver comparable long-term results with lower side effects than traditional radiation techniques. I spent a lot of time reading, talking to friends who are health care professionals and agonizing over my decision. In the end I concluded that this course was appropriate for me.
Here's what I know:
SBRT (Cyberknife is a trade name) is different from IMRT in that a lower overall dose is delivered in a higher concentration in very short time. The total delivery in 4-5 sessions is 36.25 to 38Gy as opposed to the 80+Gy of IMRT over 40+ sessions. SBRT mimics the dose delivery of temporary implantation or HDR brachytherapy (not seed therapy) plus tomotherapy, which delivers prognosis statistics similar to surgery.
Here's the why of lower dosing:
Cells react differently to short term high dose radiation verses long term low radiation. The cancer cells don't get any time to recover with SBRT and as a result SBRT kills cancer cells at a 3X higher rate over a long-term lower rate therapy, which is why only 36+ Gy is needed vs 80+ for long-term IMRT. SBRT has to be completed within an 11 day period to be effective, and what makes the higher dosing possible is the fiducial-guided system can deliver with an accuracy of less than half a mm. That, plus the fact that the robotic arm allows the dosing to be delivered in multiple planes from over 300 programmable points verses the one plane IMRT setup. That accuracy and versatility of delivery points translates into minimizing radiation dosing of the healthy cells especially in the "high rent" districts, and that is what makes SBRT possible and gives Cyberknife the edge in my book. My radiologist is confident that this will be the gold standard for PC once the long-term data is out, which should start coming out around 2013. That will be the 10 year mark for the first patients.
This is all rehashing information, but it never hurts. My hope in posting this is that some poor, scared guy, in shock over his diagnosis like I was, picks up on this and just doesn't accept the first opinion that his prostate should be ripped out.
So, that's my take on things. Oh, as a follow up, whatever side effects I thought that I had, well they're gone. I was probably just tired from lack of sleep and mentally projecting as I seem to be on high alert, body-wise. But stay tuned, it's not over. Day Three is coming up.
Hello, Bob. SBRT wasn't available when I had my treatment, and IMRT was the gold radiation standard. I hope you come out of your treatment without or with minimal after-effects. Ripping out was never an option for me either, because those who rip it out have -in many cases- to have a full radiation treatment later to kill off
scattered cancer cells in the area. SBRT is probably the gold standard now, but as with anything new that spring up, its long term effects are unknown - even though theoretically should be better. I agree with you on the principle that less radiation = fewer side affects, and that the choice you made was the best.
Would you elaborate on why your Urologist was unhappy with you treatment plan and started all over?
First, this was my radiology tech's comment, I haven't had an opportunity to discuss this with my Radiologist, but I suppose that since the plan is composed of over 300 separate points of radiation during each treatment cycle that the planning gets very complicated. I would assume that she felt that something in the coverage was not coming out to her liking and she felt that the best course of action was to start over. But, this is all speculation until I talk with her.
We all like that point where there is less ahead than behind on something like this. Yes, it felt good to get into the car knowing that only two treatments were left. Today went very smooth other than a pair of over active kidneys had me up between collimator changes. FYI, the collimator acts as the focusing part of the beam and determines the size of the beam. My radiology tech said that she could see my bladder filling up and didn't want to chance the system shutting itself down if my prostate moved too far out of the specified zone. I didn't really feel that I needed to go and in fact I didn't go very much, but whatever was in my bladder was enough.
After the session was over I spent a bit of time with the techs looking at my plan, picking up some technical details: My plan is divided into two sections, one of 227 programmable points for the finer collimator and one of 113 programmable points for the broader collimator. Not every point is used and the dosing varies. The first part is almost completely booked, very few zero delivery stops. The second part has far more zero delivery stops, but that's because for the second part they change the collimator to give a wider beam and go back over several of the original points to give a better dosage, and that's because the second part of the plan redoes the "low rent" areas that can take more radiation. It's all so very sophisticated and I am really leaning a lot.
As far as side effects, yes, what I felt after the second day is expected. After today's session I don't feel that it is any more painful or irritating, but it is a bit more constantly there. I can see that I am going to have to lean the difference between knowing when to void and when to just accept the irritation. It's not painful, it's just distracting.
Ok, so Wednesday is Day Four and Friday I am done. On Friday I'll meet with my Radiologist and go over all of the details. Oh, during our pre-flight check today, my radiology technician said that there was a web conference that she only caught parts of (another patient kept her busy) but she thinks that there were some long-term updates and she is going to find out what they were for me.
As the last three treatments were uneventful, so was this one. About a 1/2 hour after leaving the center the symptoms returned, mainly a kind of "warm" feeling (for lack of a better word) in the prostate region accompanied by twinges of urethral uncomfortableness and the occasional "do I really have to go?" It's nothing to write home about, no more intense or any longer in duration than what I felt after day two. Generally the sensations wax and wane a few times over a several hour period, but never anything that causes any real discomfort. It's almost a curiosity now. As a note, I do take Aleve on a regular schedule for creaking joints (read arthritis and a bum knee from a skiing mishap) and I think that the anti-inflammatory nature has probably helped-certainly can't hurt. As far as being tired, I feel just fine. Any tiredness that I have felt I have chalked up to the mental stress/sleep issues of doing this. Now that I am only one treatment away I can confidently say that I have had no real side effects from this. To put this into its proper perspective, the biopsy and fiducial placements pain-wise were a much bigger deal. Much bigger.
I had a good conversation with my radiology therapist today and my experience on the every other day (EOD) schedule has peaked their interest. Prior to this they had assumed that those patients that they had put on the milk of magnesia schedule (all others were on the regular 5-day schedule, M of M patients would become dehydrated hence the EOD schedule) were experiencing less symptoms because their bowls were more empty. I am their first patient on a regular enema schedule and my very mild symptoms experience is going to change their thinking about what to offer future patients. So see? Patient research DOES pay off! Do your homework first before consenting to anything. Oh, and I got an answer to the question as to why my Radiologist started my treatment plan over: This is very common. the first plan is done by the techs and then my doctor sits and reviews it, making changes and finally approves it. According to my radiology technician (herself an R.N.) my doctor is very meticulous about her plans and if she does not feel that the plan is the best that it can be, she has no hesitation to start over-and that's a very good thing in my book. My tech says that her words to her staff are always something like "can't we do better for this patient?" That's the sort of doctor and team that I want on my side, for sure!
Well, it's 5 hours after my treatment and the symptoms cycle has almost completely subsided with only the occasional, very mild "reminder".
OK, so this part of this saga is now concluded. As the other days went, so did this one, it was completely uneventful. Right now its about 18 hours and the symptoms are pretty much gone. By Monday at the very latest I expect that everything will be back to normal. I found that taking Aleve (3 every 8 hrs) really makes the difference as it counteracts the swelling that the radiation induces.
I had a long talk with Dr Williamson, my Radiologist and my Cyberknife co-coordinator Roxanne, afterward. The topic is now the results and any long-term side effects. Of course, I am concerned that I made the right decision. This was too easy of an experience and I feel almost guilty that if this is a permanent cure, I will have dodged the PC bullet way too painlessly. But Dr. Williamson assured me that this was it.
As to the long-term prospects, Dr Williamson reiterated that so far there has been zero biological failures in all of the studies and zero long-term side effects in her study, when the protocol has been followed. By protocol, they mean that the patient fits the strict guidelines set up for the study. PSA has to be within the range, Gleason has to be within range, tumor has to be completely contained, bone scan has to be negative, etc. etc. The protocol is for early low-risk patients only and my Radiologist explained that she has turned away patients who very much wanted this option but were outside the range on one or more points. There is no gambling with her on this.
So there it is. I see the Urologist next week as a follow-up, and Dr Williamson, my radiologist next month to start the PSA testing. And then the waiting begins...
Thanks for your highly informative personal log! I'm glad your course of treatment has gone so well. It's also good to hear further evidence that the treatment works well from your doctor's own study results.
That web conference your radiation tech mentioned in post #9 probably had to do with the Cyberknife (or SBRT - not sure which) Users' Group meeting that is held annually in February. I'm really eager to learn about the updates discussed. I'm especially curious about results from the Christopher King group at Stanford, as, by this time, they probably have quite a few prostate cancer CK SBRT patients with five year follow-up. I realize that is well short of the ten year data we would all like to have, but it should be long enough to get a good handle on the long-term side effect profile, especially for rectal side effects. If you hear anything about that the conference highlights and the King results, please let us know. I'll see if I can stir up some information myself, too. I'm guessing they are still in session, but possibly they have not even started yet.
Yo Straightguy: in your post (#6) you said that SBRT is probably the gold standard now. It's safe to say that is not yet the case - the jury is still definitely out, though the evidence is promising. The main issue is that, as of this point, the follow-up period for a substantial number of patients at multiple institutions is far too short. In fact, the longest published follow-up that I know of is an average of only 33 months - not even three years yet - from the King group at Stanford. However, I thought there was enough time that they would have had five year data to report last year, so I'm really looking for an update at the Users' Group conference. Also, IMRT, hooked with brachytherapy seeds and perhaps supportive hormonal therapy when appropriate, is looking like an excellent therapy choice; we are getting some highly encouraging quite long-term data about that. So your choice is looking good!
I'll be talking to Roxanne, my coordinator in about a week and I'll ask her what she has heard. Since the head of Capital Health's CyberKnife is on the review board of the CyberKnife Society (he trained with Dr. Adler, inventor of the CyberKnife-and one more reason that I chose Capital Health) I am sure that this is the source of the web conference. I'll be sure to follow up, as I am very curious myself.
As an epilogue, I should say this for those who are reading this: Every patient has to make his own choice on this. Personally I don't feel that I am a gambler, rather I am a person who has carefully researched the pros and cons and have made my decision accordingly. A lot of care in research, consultation with friends in the medical community and just plain hard thinking before agreeing was done. I didn't do this lightly and if I didn't think that this was the best option for me, I would have done something else. But I am convinced at this moment that I did the right thing. Only time will let me know. The only thing that I want anyone to take away from this is that individually we all must make the choice based on out best research and soul searching. I hope that this works out for me and for those facing this same decision, that they come to the best possible conclusion for their own situation. But please, don't let someone else make that decision for you because you are afraid to do the research or handle the decision emotionally. You will sleep better at night knowing that you were in control.
In the interest of being exact on reporting my experience I wanted to add this. I spoke with my coordinator, Roxanne, again this Friday as a scheduled one week follow up. Here's what we discussed: On Monday I experienced a bit of rectal bleeding along with some minor mucosal elimination. Nothing serious, just enough to notice and was exactly as explained would happen. Because of the no fiber/no gas diet I've had a bit of a time getting regular again. I was somewhat reluctant to return to a regular diet as I saw this as the perfect opportunity to shed that 20 lbs that I've been meaning to get rid of, but my coordinator cautioned me that the diet had no bulk in it and would interrupt my normal rhythm. Oh well. The rest of the week saw some bowl uncomfortableness in the form of extra gas and occasional cramps and the occasional discharge. All in all it was no worse than feeling like I had eaten something that didn't agree with me that was passing through my system. So today is Saturday, one week. The bowl issue is already starting to diminish and the urethral symptoms have virtually disappeared with only the very slightest of burning sensation remaining. I would put myself at 95-98% over the symptoms. Yes, I still can tell that I had just had treatment course, but at this juncture, symptom-wise, its almost a distant memory. At this rate I figure one more week or so should pretty much put me back at 100%. As a final note, I have had no fatigue issues that I can pinpoint nor did I really experience any however I will say that on Friday I felt better, more alive and engaged than I have in months. I am sure that this is the psychological release of having dealt with this issue, but I'll take it. It's a great feeling to know that I have done what I feel is the best that could be done for my situation.
I'll keep posting any noteworthy follow-ups or anything that I learn. I see my Radiologist on March 19th and I expect that I will learn more from her then. I think that it is really important that people share their experiences so that those looking down the barrel of the PC gun can get an idea of what lies on the other side.
Good luck to all of you trying to make your decision.