MY THREE YEAR UPDATE POST RADICAL DAVINCI

 

Sounds more to me you have an issue with your URO giving you the 100% guarantee that you would have natural erections after the RALP. For any URO to tell a prospective surgery patient this borders on malpractice as nothing is 100% guaranteed in life other than you will someday die.

I am 3 months from my surgery and my URO told me before that I would have ED after surgery but that he would do all he could to make it manageable and give me a good QOL. Also told me that he would get me continent in no more than 12 months. I was continent 2 1/2 weeks out from my catheter removal and today am 100% dry so can't complain there. My URO started me on penile blood flow  therapy with Cialis and injections of Trimix for the last 60 days and the injections are now giving me full hard erections good enough to make my wife happy. Last night for the first time 100mg pill of Viagra ( no injection) got me about 70% there which according to my doc means the nerves are finally getting healed.  Maybe you might have had better results if your URO had done more with penile blood flow therapy which is becoming the accepted protocol today by docs who know what they are doing.

Have you consulted with a URO who specializes with post prostate surgery ED?  Even injections should work for you, I did not ever think I could self inject but after buying an auto injector i have no problems and have 0 pain at the injection site after over 20 injections. Even if Viagra starts working I may still do the injections as my wife is real happy with the 1 hour erection and i get none of the Viagra side effects.

Other than the ED I can honestly say I made the right decision in surgery as my aggressive PC is gone for now and I feel better than I have in many years and can pee like a teenager again.

unhappy,

let me divide my response in 2 parts. for starters, to be at zero after 3 years is absolutely great, many here, would love to trade places with you on that point. i have both a failed surgery and a failed salvage radiation job (one that left me crippled for life and peeing out of a plastic bag), and despite all that, my PC is out of control and rapidly climbing away.

on the second front, truly sorry that you are dealing with both incontinence and ED after the same 3 years.

with surgery, whether it be nerve sparing or non nerve sparing, there is no guarantee with ED and incontinence. sorry, but there is some roll of the dice with any prostate surgery. and no surgeon, should ever guarantee that to a patient in advance, no matter how good he/she thinks he is as a surgeon. there are just too many variables, and it really is patient by patient.

and it's not bullsh*** about some men being dry immediately or not having ED. I had open surgery, with no attempts to do nerve sparing, as my cancer was considered to aggressive at the time. Due to surgical complications, my right side nerve bundle was left intact, and marked "as damaged". Yet, I have never had a day of ED, period. Not after the open surgery, not after 6 corrective surgeries, not after 39 rounds of radiation. I have never used a pump, any ED drugs, no injections. But, I consider myself a rare excepton, my surgeon still will not take credit for this blessing, and all of my doctors agree that it is just shy of a medical miracle.

with surgery as a primary treatment, there are no guarantees, no promises, no certainties. that is a hard fact for some to accept, but there is a degree of "luck" "good fortune", etc along with surgery, even if you go to the best of the best surgeons. that is the risk of using surgery.

i can understand your disapointment and depression on both these areas, but don't let your bitterness overcome the fact that for now, 3 years out, the cancer seems to either be under control, or erradicated. most men would rather be alive for some good years, than to be cold dead in a casket with a stiffy. not trying to make light of it.

on the incontinence front, there are men that had to take other more permament steps, i.e., implants and such, and a small group have had to have penile implant devices installed to achieve some level of sexual satisifaction. these are steps you may, if you haven't already, need to investigate.

if you are venting, we are here to receieve it, we can take it, we all need to vent at times. trust me, i've done my share.

i wish you better spirits as you continue to move forward in your life, with and without these lingering issues. i trust you can come to some kind of peace within yourself on the matters.

we are here for you.

david in sc

Post Edited (Purgatory) : 9/12/2011 4:31:21 PM (GMT-6)

David, you expressed the situation very well and much better than I did on another thread to unhappy.

Unhappy, we can all hear and feel your frustration about the incontinence and ED. You have a right to feel pissed off and frustrated. Vent away. However, to David's point. You are cancer free! That slow growing cancer you thought you may have had may have slipped out into your other vital organs and you'd be singing another song right now. Embrace the fact you are cancer free.

Ditto David's good words. Hope there comes a day where your outlook on life improves. A lot of us are not the person we were prior to treatment, and others are pretty darn close. I am one that's not and dome days are diamonds and other days are stones. But I'm alive and can still do a lot of things that I use to. I have no control over my erections, but I do have control over my attitude. Some days I just dont use that control wisely.
Michael

Yeah, I know how you feel, sort of, had a nerve sparing surgery my self.  The radiation guys here would have said TOLD YOU SO! I cant speak to the incontinence, that went away after a few months. The ED remains. I can have sex but need a small amount of trimix to make it happen. So you can go have an AUS sling with penile implant for sure, should solve both problems.  I don't know about your insurance coverage. But you don't mention ever trying trimix or the oral meds at all. Did you try these? Yep, the spontainety (excuse my spelling) is gone for sure, but having some sex is better than having no sex. The pills did nothing for me, but I still go for it with the little needle on occasion. It doesn't hurt very much, honestly, once you get the location and dosage right it works pretty good. The glass is half full my friend, you shoud try it....

I am a radiation guy who is not going to "tell you so". I am not out of the woods yet myself as far as long term effects to urinary and bowel continence and/or erectile function. Right now the continence is fine and I am experiencing the expected negative effects of hormone therapy on the sex aspects. But who knows what the future will bring?

What ever treatment we go through will have negative and lasting side effects. Of course the doctors should tell us what we are in for and as patients we need to challenge everything we are told by the doctors until we have coinfidence that their recommendations are the best thing we should do. Even then a lot of this is a crap shoot. There is hardly anything a doctor can guarantee about cancer cure or the exact side effects of PCa treatment except that cryosurgery will lead to 100% incontinence and that surgery will leave scars and that radiation will leave three little tatoos and that they will get paid for the work they do regardless of the outcome.

I do think that if all the urologist/surgeons were like mine our expectations of the results would be more realistic and fewer surprises and disappointments would exist. My uro, thankfully, after laying out the diagnoses, explaining the possible treatments, and prescribing his specific recommendations; then said... "go get another urologist opinion regarding surgery and two rad-onc opinions regarding HDR and permanent seed brachytherapy, then come back to see me if you want me to be your doctor". This was the best advice/doctor's order that I ever received. I also consulted with a med-onc and thus was in the best possible position to make decisions with a high degree of confidence and realistic expectations.

Due to the original urologist's competence, candor, and approach; and what my research revealed, I did choose him and his team. So far so good, but the fight is long from over as I have come to the realization that with my statistics this is a life long disease management proposition that will never be behind me.

UC,

Thanks for checking in. Many of us get much of our info reading books and right here on the web. Your story is a sorry reminder that options have concequences. I wish you a better life friend, you were dealt a bad hand.

Your remarks will serve the community in general, and especially those who have yet to make the decision.

Mike

Unhappy,

You can buy an auto injector on Amazon, where I got mine, it works with BD brand 1/2" 1ml insulin syringes. None of my local pharmacies could get me one. And a prescription is not needed with Amazon. You load it and push a button which auto inserts the needle and then all you have to do is push the juice in with the plunger. I paid less than $30 for mine and it works great. There is absolutely no pain when the needle goes in. the secret is using a small needle and the BD syringes I use are 30 ga in size.

If you can not find it on Amazon send me an email and I will find the link for you.

Terry

 

Unhappy -

Don't even think about trying the first injection alone - let the doc do his job, and get a proper "introduction". Mine is scheduled with the real Trimix, so that I can test the mix and have someone to deal with it lest things go wrong.

My uro made it clear that I was to let them go through the process with me. I've given a lot of injections, but myself, and there, don't want to do it wrong.

I've heard a lot of stories (second hand, but being that of a doc) of those who thought they understood the process, and wound up in the ER shortly after.

I've had discussions about the auto-injector, but the uro is against using them. We will see how that goes.

If you waste a couple of hours and things go well, whatever. If you go off on your own, and wind up in the ER, your uro will own a piece of you.

 

Unhappy,

Here is the link to Amazon with the injector I bought and use. My URO told me it was Ok to use the auto injector if it made it easier for me to inject.

http://www.amazon.com/Ambimed-Inject-ease%C2%AE-Automatic-Injector--Injections/dp/B000PKYX8K/ref=sr_1_1?ie=UTF8&qid=1316007500&sr=8-1

When I travel this also makes a good carrying case for a preloaded syringe.

Good luck

Terry

 

Dear UC,
You are not alone. I had my davicni surgery Sep 10'2009 and I am still incontinent and have ED. I was just recently put on Visicare and my Uro is not inclined to do the Advance Sling until he exhausts all none surgical procedures.
As for the ED he is going to start me on Trimix soon.
I have started to adjust to the fact that I will be this way for the rest of my life. At least I'm alive.
Not everyone is the same. I am sure there are plenty of guys like us. Part of my problem is being over weight and I'm worm king on that.
Don't give up hope.
Len