Looking for Cyberknife feedback and info

I was diagnosed with PC just a few weeks ago. My Gleason is 7 with only one core at 3+4, the others, 5 of 13 samples, are 3+3. My stage is T2a and my PSA is 4.6. Initially, my Uro suggested the robo surgery option and sent me to another Uro who has done about 1300 of them. I am comfortable with his track record and I believe he wants me to be cancer free - I just don't believe he is open minded about my options. Tomorrow I will see an Oncologist who specializes in CK for prostate cancer. He too has a good track record with over 1000 treatments performed. I have no doubt he will tell me his method is good, I just wonder if he will tell me it is the best or if he will be open minded.

I was told by the robo surgeon that "there are problems" with the Cyberknife. Patients who undergo CK treatments experience ED and incontinence issues unexpectedly down the road, say, 5 years or so from the treatment. He told me there was also no follow up option for anyone who is treated with CK if there is a recurrence of the cancer. I was sold on the robo, with all its side effects at first and even scheduled a date for the surgery. However, I have since done some research and now am not sure I have made the best choice.

I have no doubt that the robo treatment is safe and effective. I am just not sure that the CK is as bad as I was led to believe. Yesterday, I was almost in tears over this, a hard thing to admit for me since I tend to keep most of my emotions hidden. I am feeling terribly confused and overwhelmed with all the information available. My wife too is very distraught. She is sorta attached to me and has a vested interest so she is doing as much reading as I am. Neither of us feels well informed - just heavily educated and maybe a bit over marketed.

So, let me get to the point of my post. I need feedback from those who have had the CK done, especially anyone who is post op for 5 or more years. I am doing my best to sift through all the marketing hype and get to the meat of the story. What is your experience? Seriously, I am to the point of thinking I would be better off to just ignore it (don't worry, I know better, but you get what I mean).

My options as I see them dont look any better either way. On the one hand I have robo with a catheter for 10 to 15 days and anywhere from 6 weeks to years of incontinence; immediate ED that may or may not get better, though I am told it "typically" does; but I get a compete biopsy of the prostate to tell me with some certainty if the cancer is contained. On the other, a week of treatments that don't interrupt my daily routine much but could result in some bowel and or urinary dysfunction and ED, all of which have about the same chance of permanence as they would with Robo; the possibility of extraneous tissue damage from the radiation; and no tissue to biopsy to see if the cancer has spread.

I am anxious to talk to the oncologist tomorrow, but I am not sure of what to expect.

Hi Steven,

Welcome. You've just learned one of the first lessons of prostate cancer -- one can't expect a doctor to be informed about any treatment other than the one he does. There are very few exceptions. I talked to 6 doctors in various specialties and did a lot of my own research before making up my mind. To be fair to those doctors, I think they are pushing the therapy they think is best -- the one they devote their lives to. However, I think they tend to filter out data that conflicts with their pre-conceived notions and filter in only data that supports it. That puts the burden on us, the patients, to sort it all out and figure out what's what.

In the end, I chose SBRT (CyberKnife is the most common brand), because other than cancer control (which all therapies do quite well for my diagnosis), potency preservation was my biggest concern. I've experienced no ED at all. In fact no lasting side effects (other than diminished semen) at all 3 years later. If you go to the Cyberknife.com site prostate cancer patient forum, you can talk to doctors and other patients with longer treatment records. In the latest 6-year study by Dr. Katz (you can click on the link in my signature below to read it), the potency preservation rate was 75%. There were no cases of urinary incontinence - in fact, I've never seen that listed at all as a side effect of SBRT treatment in any report by any SBRT doctor -- and I've read them all.

Because of your one 3+4 core you are considered favorable intermediate risk. It's always a good idea to get a second opinion on your biopsy from Bostwick, Epstein or Oppenheimer, but frankly I doubt it will make much of a difference in your treatment alternatives. Almost all treatments are open to you, and your diagnosis typically follows an indolent course, which means you have the time to make an informed decision.

I agree with Tudpock that HDR brachy is also a good alternative, and so is LDR brachy in the hands of an expert. Pencil beam proton has just published some good early results, but is only available in a couple of places, and is expensive. Traditional proton is no better than a long course of external beam radiation (IMRT). I think Ash Tewari is really onto something with his tortionless nerve-sparing surgical technique.

Research the Hell out of this before deciding.

Please read the book "Prostate Snatchers". It is written by a MD (Urologist I believe)and a patient who had cancer of the Prostate and how they treated the cancer. Lots of good info.

Good luck.

Bill

Steven,  Here's my link:

https://www.healingwell.com/community/default.aspx?f=35&m=2818301

I did SBRT here in St. Louis and had a very good experience.  The link gives the details of what it was like day to day. Like you, the "quality of life" after treatment was very important to me (as it is for all I'm sure).  I did a lot of research, beyond what Cyberknife touts on it's website, and came away convinced that it was the treatment for me.  I'm only one month out from treatments, but it's like nothing ever happened.  No real urinary issues (I still get up to pee in the middle of the night, but that was pretty comman with me anyway), no burning or troubles with flow (I was put on the drug "Flomax" during treatments and still take them for at least the first 6 months out).  I have no ED at all, and have only seen a marked decrease in semen output, which isn't that big a deal at all.  Sex is as good or better than ever.   There are no mountains of data with long term studies, but what they do have of 5-10 year looks great and was what pushed me forward.  I think you've figured out that doctors are going to suggest what they know.  My first uro was trying to get me to schedule robotic surgery at our intial consult after the biopsy, without discussing anything else in depth (he did mention "seeds" in passing, but brushed them off).  This was going to be MY decision, not his, so I went to work and explored variour radiation (LDR BT, HDR BT, etc), without excluding surgery.  In the end, I chose SBRT (Cyberknife, although mine was done on a different machine), because it was what I was most comfortable with. You will have to make the same decision, and it's one of the hardest parts of this journey.

I've heard and read about all the pro's and con's of the various treatment options.  I decided I was fine without the full pathology report post surgery.  I made my choice (and would have done LDR BT, if I had not chosen SBRT), and I'm very happy with it.

No docotr from any of the disciplines is going to give you a guarentee of anything (and if they do, run away).  There's always some risk involved.  For me, I felt comfortable with my radiation oncologist and my new urologist is too.  I have no regrets.  This was MY decision.

You can find my email through my profile, so feel free to reach out and ask me any questions you might have.  I'd be happy to help.  Best of luck to you.  You've come to a great place!

Mike

Steven, I think you're getting a great 'handle" on your situation. Making the decision on course of treatment is one of the hardest, if not the hardest, step in the journey. In my opinion, you are going about this in the right way, with the right mindset. Good luck!
Mike

Steven,
As you are finding out, you are your best advocate, and you will have to live with the choice you make, not your doctor.
Excellent step in getting an MRI as this will show if you are suitable for surgery. If the cancer is contained then any of the options, surgery, Cyberknife, LDR and HDR as well as IMRT will work about the same in regards to a cure.
Not having secondary options with any of the radiation options is just not true, and I have a hard time believing that doctors are still saying this in light of all the secondary options available. There is reseeding with different isotopes, I believe you can also have Cyberknife again, but you should check this out. There is also cryo surgery and HIFU available as salvage treatment. Salvage surgery is a poor option, but can be done by an expert.
The advantage of surgery is the post op pathology, but many still have a reoccurrence after a clear post op pathology, and many do not reoccur with positive margins, so I doubt its real value; although it sounds good. The advantages to any type of radiation is that 5mm to 15mm of the prostate bed is treated as well as the seminal vesicles. The other advantage is the clear advantage of the side effects of radiation vs surgery. This advantage increases with age, as younger men can do just as well with surgery, because of their ability to recover more quickly.
Continued research will enable you to sort the myths from the truth so you can make an informed decision about your treatment.

Steven:

Would you email me privately? I'd like to ask you some questions, if you don't mind. I'm in Chattanooga, too.

Email address is in my profile.

Thanks!!

-Alan