Now that I have your attention, allow me to introduce myself.
I’m an ingenue in this venue. Have been reading voraciously, too paralyzed with stage fright to post. Comforted by fact that price of admission to this theater appears to be compassion with empathy.
Feel fortunate to be in Intermediate-favorable group, with grade 2, Gleason 3+4. When I heal from last round of core samples, urologic oncologist wants to go in for second look through perineum to rule out more aggressive cell growth, as he was reluctant to keep piercing urethra during first biopsy.
If news is good, considering SBRT. Great experience so far with UCLA Health. Anybody else familiar with Clark Urology at Westwood campus? Read mention of concerns about rectal damage with SBRT. Is use of rectal spacer (SpaceOAR) not standard practice yet? So relieved to hear that pleasure through receptive anal still possible after treatment - not total bottom but I like to have options.
Mortified by reports of shrinkage after RP. I wish an inch or more of length were inconsequential, as in “I have nine more,” but that absolutely not case. I actually think my own longtime abstinence due to parental caregiving commitments has already resulted in smaller erections. I was recently booted off the cruising site Adam4Adam for extended inactivity. The lesson of the adage “use it or loose it” is not lost on me.
Frankly shocked by general lack of familiarity and even resistance to pump as tool for rehab. Thought gays would be all about it. I’m actually psyched to break out my top of the line model, purchased many years ago - not at just any sex shop but at fetish Mecca that is Rough Trade Gear (roughtradegear.com) Been pumping with partners as recreation for decades. Thinking of getting a head start on rehab. (Recommend Rough Trade for all manner of cock rings, toys, ball stretchers, clamps and specialty gear that encourage nipple, ass, ball play and other activities that take focus away from the need for a penetration-strength erection.)
Planning to purchase Dr. Mulhall’s book. What’s his stance on pumping?
Also wondering if there’s such a thing as a penile rehab group. Seems like a no brainer. Who better to navigate the difficult physical and emotional terrain of PCa related ED than a group of gay men who can encourage each other’s erections with patience and understanding. Used to frequent nude yoga group in Hollywood. Same group had guided tantric yoga sessions in which focus was on erotic touch not centered on penis. Also hosted massage parties. Both were incredibly affirming. Just saying.
I also had SBRT for prostate cancer at UCLA - 10 years ago - no issues other than loss of cum.
To answer your questions:
"Read mention of concerns about rectal damage with SBRT. Is use of rectal spacer (SpaceOAR) not standard practice yet?" Late-term rectal toxicity is a very minor issue. I consider SpaceOAR to be a cure in search of a disease. For one man in my gay prostate cancer support group, it actually protected some of his cancer and pressed it against his rectum. As it grew, it caused him a lot of suffering. I am not a fan:
The reason I chose SBRT was because it had a very low incidence of ED. I have not been disappointed. There is no need for penile rehab. I did take daily low dose Viagra for 6 months as a protective measure.
Here are some questions to ask yourself if you can't decide:
So grateful for your reply and for your well-informed opinions. Thank you.
Amazingly reassuring to know you went through this procedure at UCLA with what sounds pretty close to the best possible outcome. The questions you forwarded are all on point. Again thanks.
Your posts are remarkable for the depth of knowledge you show and your ability to relate to those who are suffering with very different diagnoses from yours, and who are left with much graver changes in their sexual health, their masculine identity and sense of well-being.
You should search out some of the videos on YouTube regarding penile rehab. Sorry but the consensus is pumps do not work. They only work to the base of your body. Your erection begins inside the body. You will be swinging a hard dick around like a lawn whirlygig. Use it for fun, but don't expect full rehab out of it. Speak with your doctors and team and ask about the rehab plan before you do the procedure. They may even start you on Cialis or Viagra in advance to keep the vascular health healthy.
A note on shrinkage: the reason your erection will be shorter is that a section of your urethra is removed in an RP, then the remaining length of urethra is reattached to the neck of the bladder. So it's not necessarily shrinkage as much as it is a mechanical shortening of the urethra, and hence penis.
Thanks for your post. I suspected as much after reading descriptions of the procedure.
I’m a little dismayed by the lack of explicit reference to removal and resectioning of a portion of the urethra as the direct cause of loss of penile length in the medical literature. It’s as if there is no consensus as to whether this is the actual cause or there is enough variation in outcomes to ascribe the cause to other factors.
In any event, the prospect is particularly horrifying for men with extremely enlarged prostates. Presumably, a larger prostate means a larger section of urethra that must be removed and a larger span to resection - thus a larger reduction in penis length?
At 81 grams, my prostate size and attendant urinary symptoms make radiation therapy, including brachytherapy, inadvisable, according to MSK:
“Those patients with very large prostates or those who have a significant amount of urinary symptoms may experience more side effects with brachytherapy. In these situations, we often steer such patients toward other kinds of treatment such as surgery or external beam radiotherapy. Surgery to remove a large prostate may be the better approach, to avoid the urinary symptoms that could be associated with radiation treatments.” (mskcc.org/news/what-every-m...
This jibes with what my oncologist at UCLA is telling me: basically, that radiation should not be used at all in men with intermediately aggressive cancer in their 50s, as their chances of complications or recurrence with an irradiated prostate are too high and too limited in terms of treatment options. He stresses that radiation can always be used as a follow up to surgery; however, the converse is not true. (mayoclinic.org/diseases-con...
I know that long-term outcomes from SBRT look good, but as this technology is relatively new, we don’t know how they will fare beyond 8-10 years. The long term morbidity data in general for young men receiving radiation as opposed to surgery don’t seem to be very good.*
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Regrets
post-prostatectomy incontinence and ED
Update on post-prostatectomy issues and follow-up
Interesting story from the oncologist, and also my experience with Trimix.
