Cyber Knife Warning

I'm writing the following for those who are considering Cyber Knife. I was 54 at time of treatment with a Gleason 6 3+3.

Cyber knife treatment gone wrong

Cyber Knife damaged my urethra and the part of my bladder that connects to it, and I can't sue because the fine print mentions that as a possible outcome for 2% of patients. Bowl movements have never been the same since. I was told when the treatment was described that a gel insert would be placed to protect my rectum, but it was never done and I didn't know enough to ask, I just kept signing things they were giving me to sign. There were imaging procedures in the process leading to radiation treatment that were painful and uncomfortable that I was not warned about ahead of time. It's been two years since treatment, for about 18 months BMs were uncontrollable, now more regular, but messy though my diet hasn't changed, and when it's urgent there's no stopping it. I used to be a once a day regular never urgent firm... sorry for the poop talk.

I have a urethral stricture that needs addressing surgically that in the meantime necessitates the use of expensive alpha blockers just so I can void, but it's not good enough. I dribble when I pee, and I continuously seep out urine because my bladder never empties. Pads help. And I haven't even mentioned erectile dysfunction... nobody warned me about the weird and unsatisfying ejaculations. At least I knew from reading that Cyber Knife and EBRT were on average the same outcome in that department, but it was a still a gradual decline in both performance and pleasure. Cyber Knife promises more than it delivers in terms of ease and comfort. The high doses of radiation given over a short period of time are more dangerous than they make them out to be. If your priority is the 5 days of treatment, and you can afford it, go for it, but it's not a magic bullet, and I'm left wondering if the lower doses of conventional EBRT over 30-40 days would have been less damaging. Ironically I chose radiation to avoid surgery. Now surgery is going to be more risky because the urethra is scarred. 2 years of discomfort and costly lost time at work, which I believe cut deeply into my income, not to mention the stress and depression. It took them 2 years to decide I needed a cystoscopy to see what the trouble was, and they didn't even insist, it was my choice at a visit.

My prostate is nestled up into my bladder and that made me vulnerable - something urologist was happy to tell me after the fact, from MRI taken before the procedure. They don't consider particulars of anatomy before the procedure? Advocate for yourself but finding this kind of information or warning ahead of time is impossible, and the urologists or oncologists I've met at the "best" hospitals in Boston had nothing to offer but promises.

Cancer free but frustrated

I am, as far as I know, cancer free. Caught early by a very attentive primary care physician doing a physical exam. Two urologists after her said they would never have worried about such small lumps. Biopsy revealed an aggressive form of cancer. So I'm lucky. Angry or frustrated about it some days ... but still lucky.

Single with prostate cancer

Also, another warning. This is hard to do when single, getting the news alone, going to appointments alone... don't be such stereotypical dude and take a friend with you. I wish I had. And when things improve, and you want company, it's hard to date when you have an absorbent pad in your underwear, and you know if things got interesting it'll require a sensitive conversation, and a pill that will give you headache for the whole of the next day ... so before anything, take care of your mental health, cultivate the spiritual within you, get in shape, and consider your particular challenges as blessings because they'll call on strength you never knew you had, and they'll direct you in ways you never thought you'd go.