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

It was important, but not the only thing. I have to acknowledge my life reality. My wife is one of the women who find intercourse painful since she went through menopause, and she cannot do any of the hormone based treatments because of her family history of BC. So, we find other ways to be intimate.

It was important, but not one of my highest priorities. Cure, Continence, and to be honest, piece of mind, meaning, for me, understanding of pathology and swing quick PSA results, were higher on the list.

My wife and I are married 38 years, and while we still are active, it's not an every day, or even every week, thing any more. If I was younger, newly married, single, I might feel differently.

TA, I believe you hit the nail on the head - in the setting f a support group, you will get very different feedback, than when patients are talking to their doctor (or not talking)

It wasn't a consideration at all for me. I was more interested in dealing with the cancer first. I figured there would be ED treatments later if that problem came up, or didn't come up or...

My medical team did mention that there could be ED problems and made an effort to gauge my concern in that regard but my attitude then, and now, was I was more interested in effective cancer treatment. I told the surgeon if ED issues present themselves that I was confident that they had treatment plans for that.

guess I am in the minority here.
Andrew

Dreamerboy said...
As far as the other treatments, it appears that surgery often starts out worse ED-wise and gets better over time and radiation starts out better and may get worse over time - that being said I realized that everyone is different. Anyway, psychologically I like the prospect of things potentially improving so that is one of the reasons I chose robotic surgery.

Possibly you missed the thread addressing that canard:

www.healingwell.com/community/default.aspx?f=35&m=3338671

- Allen
forgot to make it linkable

Post Edited (Tall Allen) : 3/1/2015 5:01:09 PM (GMT-7)

It was very important to me when I was first diagnosed. Then I went on HT and it doesn't seem all that important anymore...

Allen,

Going into treatment I put curing the Cancer and not leaking ahead of my concerns about EF.

After treatment, and knowing I had the Cancer and leaking behind me, the EF became important.

I do not know of anyone who put EF ahead of curing the cancer. Not to say there isn't someone.. I just haven't met them. Based on this, I can see how doctors who treat PCa may not "think" EF is as much of a concern to the patient as curing the cancer is.

Just to reiterate - I did ask how important it was after oncological control. I didn't have enough room in the title, but I spelled that out in my original post.

I find it hard to believe that the patients of a doctor who provides treatment for prostate cancer seldom bring up the topic of erectile function after treatment and don't seem to be very concerned about it.

I'm sure all our doctors mentioned it (at least I hope so!) and quote odds (sometimes inflated) to the patient. They may even take a baseline EPIC or IIEF/SHIM and some follow-ups afterwards. But what they don't do, apparently, is really investigate - set standards, track the data, look closely at risk factors, investigate other sexual dysfunctions, look for preventative interventions, etc. If it weren't for Dr. Mulhall, I don't think we'd have even as little as we do. Doctors take their cues from their patients - when we don't insist to know more, they turn their research to the concerns that their patients complain most loudly about.

I don't know why we patients don't raise it more as an issue - resignation? puritanical guilt? embarrassment? privacy? depression? a grin-and-bare-it culture? a feeling that a basic pleasure is expendable in non-procreative years? a feeling that it's an inevitable cost of PC? a feeling that doctors are too busy with more important things?... It's odd to me that we often throw around the term "holistic" - meaning treating the whole person and not just the disease - yet use it often only to mean changes in diet and lifestyle, while leaving out such a large determinant of our quality of life for many of us.

- Allen

I just checked for clinical trials in the US for interventions for erectile function (EF) in PC patients (as opposed to PC therapies like focal IRE where EF will incidentally be measured.) I found only five current ones: one at Cleveland Clinic (CBT, viagra+pump), 3 at Johns Hopkins (EPO,vibrator, & diet/exercise) and 1 at UC Irvine (intraoperative endorectal cooling). A couple of others (for a pump & for hyperbaric oxygen) have apparently been dropped. That's it! Apparently, not a priority.

- Allen

My surgeon said he was possibility taking some neurovascular bundle nerves. Oh boy, was I taken back. I called him several times before surgery and stated not to touch the nerves. He said our number one priority was irradicating cancer, incontinence and ED second and third. After thinking about it for days I called him and stated that I have full trust in him and to do what he thinks necessary, taking all nerves if he thought it was necessary. He thanked me for putting trust in him. As it turned out he took only partial of one side, and no ED. My biggest concern was ED, my urologist made me think otherwise. Erections would be of no use if I was dead.

halbert: Menopause is seldom addressed. I think most men are diagnosed when their spouses are dealing with menopause, yet another log on the fire. I sometimes have far-side moments in my head. A man is struggling with ED, and finally is getting results only to hear “woa buddy, where do you think your sticking that”

Well I had a think when I was diagnosed at age 67, we had produced 3 great kids, and we had in the past experienced a great sex life, but when we moved into our sixties, as with most people I know that are our age, our sex life was moving to zero, which never bothered us at all, so ED verses death was a no brainer.

I have ED since the operation and not had an erection for 8 years, and at 74 could not care less.

I happy with my lot. :)