How important was maintaining erectile function in your primary treatment decision?

I agree with Yoop...plus the fact that both you and Prato had nerve sparing surgery. The percentages are much lower for only partial or no nerve sparing. Hence the "averages" across a broad population.

Jim

I think the discrepancy may be definitional. I took a survey that footnoted that the return of EF was defined to include the use of PDE5s and injections. This certainly would not be my definition of getting Back to Baseline (pre-treatment baseline), but it was the definition used in the EF survey.

I could see how a surgeon may be able to claim 85% if he includes the use of pills and injections; however, based on the studies posted (by TA) I would feel that 85% BTB is pretty high for any surgeon. Indeed, if I read the studies correctly, only 4% of the guys over 60 years old who opted for surgery got BTB.

Agree with Yoop as well. I would add, related to his comment 2points
1. My doc is one of the recognized most skilled surgeons in the biz, so I would assume his numbers are higher ( I know, everyone probably thinks that about George surgeons, because we want to)
2. To correct halbert, my doc said 85% overall, but initailly said 65% for me specifically due to the location of the primary tumor.
He did slightly say he was slightly more optimistic, AFTER doing a DRE

I voted very important, but in all fairness the answer may differ depending on the stage of your treatment discussions and applications. When the news was first delivered and even through most of the initial discussions the topic did not really come up and now looking back I may have NOT thought of it because the mortality of the situation was more prevalent. Now that I have moved past the mortality issue(for now) and after experiencing the SEs of HT I can say without any hesitation that it's very important.

Sex is just one of many great pleasures in life, including orgasms, which are still there even with total ED. I don't get those who equate QOL with the ability to have an erection. Seems like a stunted perception of QOL, so limited, and the idea that they would give up on treating their cancer for a few more years of erections seems ridiculous to me. Overtreatment is another topic altogether, but if the choice is erections or living out a normal lifespan, that's an easy one for me.

In that case, he should have framed it as "in your decision on which treatment to have?" I didn't read "primary treatment decision" as taking the question of cancer control off the table.

Yes, you did, my bad. Seems a lot of us skipped that.

Wasn't that a James Bond movie?

Phenom,

Tall Allen said...
... I'm obsessed about it. I thought I'd take a poll to see how crazy I am. So in deciding which primary treatment you wanted, after oncological control, how important was maintaining erectile function?

- Allen

The italics in the above are Allens. He could have been clearer, I guess. But, if you think about it, none of the treatments are good for erectile function and if ED was the primary concern, and cancer control was secondary, then nobody would ever get treated.

I know I went into surgery willingly but sick with worry about my sex life.

Most of my research before my surgery was into rehabilitation and treatment for post-surgical ED. On this forum we often say "Dead men don't have sex." That's true enough but I tend to look at it the other way around: What sort of men can't have sex? Dead ones. I went into surgery with a multi-level contingency plan to claw my way back to life. I am still working that plan. I remain hopeful.

Thanks, Tall Allen, for bringing this up. So many discoveries and surprises. Are our doctors honest with us? Are we honest with our doctors? Are men with prostate cancer meeting in groups honest with each other? Is a man with diagnosed prostate cancer honest with himself? Deep stuff.

I delayed making a treatment decision for half a year because there seemed no "cheery good choice." Surgery to remove my cancerous prostate, and possibly having cancer that may have already escaped my prostate (perineural invasion noted on my original diagnosis biopsy report)? How unappetizing and unappealing is that?!

The virtual certainty of Erectile Dysfunction after RRP? Before I made my decision for Radical Retropublic Prostectomy, I knew erectile dysfunction was a highly likely price to be paid, and I was willing to pay it if it meant getting rid of my prostate cancer. With a December 2014 MRI at Hopkins showing cancer had escaped my prostate -- which turned out to be a mistaken analysis, according to the post-op pathology report, which found NO extra-capsular cancer -- I concluded I'd rather be alive with ED than perhaps soon deceased from PC ... this was my thinking anyway ... and I went all in for the RRP. The original 8/1/14 pathology report said, "Perineural invasion identified" which was not found on the final Hopkins path report ("organ confined"). Go figure!

For some reason (most likely, simple denial) I never paid attention in advance of the RRP surgery to Incontinence as the second bit of unpleasant side effects virtually certain to be a side effect from the surgery. As incontinence has played out so far, I went from gushing like a firehose the first weeks and 8-12 pads/day, down to, now, only five weeks since the catheter came out, 1-2 pads/day, and my urinary control is clearly making big progress in a relative short amount of time. Key seems to be it's becoming blessedly automatic to clamp down hard with the Kegel exercise whenever I jump up after sitting awhile. End result is my bladder is collecting increasingly more urine every day, which eventually communicates I need to pee, I find a bathroom, and have a strong stream, on MY schedule. Heaven!

It's been a heck of an experience, celebrations followed immediately by surprises and disappointments and more celebrations. I'm taking the one a day for thirty days Cialis 5 mg tablets. No evidence yet of any benefit from that, my feeling is the dose is too low. Pre-surgery a 20 mg Cialis tablet worked great. And it needs to be said that sex can be either an important part of intimacy and communication, but all by itself, not related to anything but that momentary pleasure, comes up severely wanting. Never thought I'd ever say that. Sometimes just a shared look, holding someone's gaze, can be more intimate than "sex" in the traditional sense. Life itself continues being the best lesson ever! And always, so important, "Life starts now." Not my own insight, but one I'm grateful I'm able to remind myself ... in good times and bad.

Bill Positive

I did vote "very important" but I think for me it is more than the actual act of intercourse. As Freud noticed sexuality is deeply ingrained into our psychology. It's a feeling that I will be crossing some kind of dark threshold into seniority (although the younger people I work with would say I'm there now). I'm concerned that I will feel less masculine, less desirable, that my wife and I will have little interests left in common, that my wife will lose respect for me (even though she says it won't be that much of an issue), that I will be uncomfortable when the talk of sex comes up in social settings . . . the list goes on and on.

Hi Allen -- re what PNI means, that's an important clarification I missed when PNI first came to my attention. As you say,

"Perineural invasion does not mean that the cancer is not organ confined. Those are different things. PNI may raise the risk slightly that the cancer had an opportunity to escape via that route, but that doesn't mean that it has."

A quick skim tonite of the American Cancer Society's website, www.cancer.org, I came upon this definition (below). I remember conducting a search for a definition of PNI six months ago. I might have got my mistaken understanding of what PNI means from the American Cancer Society's explanation by not reading the whole thing carefully:

_______________________

-- "What does it mean if my biopsy mentions that there is perineural invasion?

-- Perineural invasion means that cancer cells were seen surrounding or tracking along a nerve fiber within the prostate. When this is found on a biopsy, it means that there is a higher chance that the cancer has spread outside the prostate. Still, perineural invasion doesn’t mean that the cancer has spread, and other factors, such as the Gleason score and amount of cancer in the cores are more important. In some cases, finding perineural invasion may affect treatment, so if your report mentions perineural invasion, you should discuss it with your doctor."

_______________

Looks like the first sentence (below) registered, but not the second (below):

"When this is found on a biopsy, it means that there is a higher chance that the cancer has spread outside the prostate. Still, perineural invasion doesn’t mean that the cancer has spread, ... "

Which makes the same point as you've just made here on this thread.

Fascinating in retrospect the #1 reason I decided to get the surgery (which thankfully had a very successful outcome) was my misunderstanding the whole time a diagnosis of PNI meant my Prostate Cancer HAD escaped the capsule via a tiny nerve going through the prostate capsule wall.

Funny about misunderstanding, or understanding something incompletely. An all too human experience. In the movie classic, Casablanca, there's a conversation in front of Rick's nightclub between Captain Renaut (spelling?) and Rick (Humphrey Bogart). Captain Renaut asks Rick, "Why did you come to Casablanca?" Rick says, "I came for the waters." Captain Renaut says, "But there are no waters. We're in the desert." Rick says, "I was misinformed." Brings a smile to my face every time I see the movie.

Thanks, Allen, for clearing this up for me. Much appreciated.

Bill Positive