As I read through the JH and UCLA details, the thought that occurred to me is that the RO are basically saying "you should have decided on radiation treatment as your primary method instead of RP, because now you have gone through that miserable RP procedure and now we think you should go through the RT anyway."
I know that I am going to get hammered about
this, but I like to look at the PSA numbers on the one hand and the post RP and Post RP+RT longevity numbers on the other. If you are like me and suffered through multiple side effects (SE) from what was supposed to be a "textbook" RP you start reading the fine print and asking more pointed questions about
the potential SE. For my RP SE:
* severe urinary tract infection from the surgery
* Then a month later, I developed a urinary stricture. My surgeon told me that "I must have a sensitive urethra" when he operated to
open the urethra.
* An abscess in the incision -After repeatedly telling the surgeon that there was something sharp poking through the incision (and being told it was normal scar tissue, don't worry). The infection turned out to be an antibiotic-resistant staff and e-coli bacteria that took about
8 weeks to clear up.
* 9 months post RP, I developed a suture-failure hernia (also called an incisional hernia). Some of the sutures used to restore the abdominal muscles to their normal position after the surgery failed due to the abscess/infection. (Apparently hernias occur in 5+% of RP surgeries - who knew?)
After my RP, due to a positive margin, my wife and I talked to 2 different RO about
the RT options as well as several other family doctors. It was interesting how both of the RO downplayed the impacts and side effects from the radiation. Neither one even mentioned quality of life impacts - their only focus is on killing the PCa. Having read the 2013 American Urological Association (AUA) Guidelines document (available at:
AUA GuidelinesWe questioned both RO's about
the impacts of the radiation on my body.
Specifically, we questioned the impact on the nerves and muscles related to ED (assuming the body had any chance to recover prior to start of RT), the urethra, bladder, rectum, etc. and also the risk of ancillary cancers caused by the treatment radiation and process. Both ROs told us they use the most up to date IMRT process. One RO told us that the RT wouldn't impact the nerves at all. The second RO mentioned that the radiation doesn't impact the nerves, but it will kill the capillary blood vessels that supply the nerves -but he didn't see this as an issue. The second RO said that if you have had a stricture or a "sensitive urethra" the RT has a much higher chance of causing long term urinary incontinence. One RO told us that they insert a special material between the prostate bed and the rectum to minimize long term damage including cancer and incontinence, including frequent diarrhea. The other RO said that the impacts on the rectum were "no worse than a severe case of sunburn" - SERIOUSLY!! I can't remember having a sunburn in that particular area of my body for reference.
Neither RO had any answer about
the risk of additional cancers from the procedure. (Apparently no one actually tracks these formally.) However, one did mention that there is a potential issue, due to the frequent number of abdominal CT scans required during the IMRT procedure for targeting accuracy. (One of my other MD's told me bluntly that "they don't expect you to live long enough for the secondary cancer to be an issue".) However, he told us about
several of his younger patients who developed bladder, colon or rectal cancer after the RT and have been largely incapacitated by 10+ years of incontinence and diarrhea. Another pointed out that it is always surprising to her that the same men who were very concerned about
their exposures from Japanese nuclear reactors had little concern about
going in for any radiation treatment or exposure.
The AUA Guidelines mention that their recommendations may be artificially positive for the RP+RT results since nearly half of the men might not have had a PCa recurrence regardless of the RT.
My observation is that the surgeons and RO have a vested interest ($$$) in propagating their procedures. For high risk men there are not many good options, but everyone should ask their medical professionals very specific and personal questions about
how the process will impact their body and quality of life. Remember, doctors are like computers - if you don't ask the specific question, they don't generally volunteer it if it makes them look bad.
Remember that life can really suck if you happen to be one of the 5% who have any of the awful side effects.