I prefer not to have unrealistic expectations and do not like overly optimistic predictions that dash my hopes when reality sets in, so I created this list of things the doctors might not tell you – not to discourage anyone, just so that you know what to expect.
Although intellectually I realize the surgery probably saved my life, from a patient's point of view I had no symptoms other than urgency. Treatment caused (hopefully temporary) castration, loss of general confidence, memory loss, and loss of identity. Is it understandable that even though I should be grateful I don’t feel that way right now?
If they say not to worry because 75% of patients recover erectile function, but what they don’t say is the odds of surviving Russian roulette are better than 75%, so don’t be surprised if you are in the 25%. You’ll have to ask over what time frame they are talking about
recovery – minimum and maximum, and what they plan to do to speed recovery.
Only 15% of patents respond to PDE5 inhibitors (like Viagra) after surgery. You’ll have to ask what they will do if the PDE5 inhibitors don’t work.
They won’t tell you *why* they don’t want you lifting more than 6 pounds unless you ask.
For a week or more after surgery, you may have night sweats that soak the sheets.
No matter how much their marketing materials will say they will support you and give you easy access to counseling, sexual health services, etc., you will have to manage your own case and push to get those services. Since you will be in shock and possibly hormone-deprived, it would be ideal if you had a pit-wife to manage your case.
If they say to wait and give it time, look up Dr. Mulhall’s Sloan-Kettering lecture and press them on the topic of muscle atrophy and penile rehabilitation. They won’t volunteer, so you’ll have to ask what their rehabilitation protocol is.
You may have to press them to treat the patient and not just the disease.
You may have to be your own advocate for treatments.
Expect some let-down for months to years after surgery – you’ve gone through a life-changing experience and it will take time to focus on what you *can* do instead of what you *can’t* do
Things will get better – just not on the schedule you would like.
Biopsy: June 2009. Gleason Score: 3+3.
Zoladex 10.8 mg subq implant on Nov 2, 2009
da Vinci RRP March 2010 Virginia M. Hosp.
Pathology: margins clear
6-week post-op PSA .06
April '10, Cialis 10 mg 2xweek, 1/4 of the time results in 50% erection
Bladder neck dilation May 2, 2010
0.08 cc Bi-mix injection June -- 80% successful