new club member

Yobiks,

I was of a very similar mindset as you to have the surgery as soon as possible.  One comment you made was that there was nobody in Portland, OR that did the surgery exclusively and that the surgeon you have has done 250.

I am traveling out of state for surgery on Valentine's Day (how romantic!) to get in with someone that had the best experience I could find.  You might consider that while there is some cost/inconvenience with traveling, you only have the surgery done 1 time.  I would hate to say afterwards that I wish I had gone to someone with more experience, but at least I saved $1000 in fuel or airfare. 

Good morning guys----- I am less than a week away from (open rp) my big adventure at the hospital (tuesday). I have been looking forward to this event now for 6 weeks and am now closing. What is the deal with depends? Do you wrap them around yourself and the catheter or what? Would it be more comfortable without anything on under sweats with the catheter? What about sleeping- I tend to roll alot when I am asleep. Any suggestions on any other related subject?

Clocknut--- you are voicing many of my concerns. My urologist does a couple rp's/month. I don't expect to get caught in a traffic jam.  My understanding is that no one in Portland Ore. does this procedure exclusively. I feel confident in my choice of surgeons. I  also feel confident in my decision. Cancer is nothing to mess around with even if all indications are it is a "slow moving" form. got to go... It's off to the surgical nurse to ask all those embarrassing questions that at this point seem so normal.

yobiks, it's unclear from the "couple per month" whether or not your doc has the requisite experience you would want.  I don't mean to offend you but I hope you have taken the issue into effect before making a final decision.

You may be lucky but do you really want to go thru the rest of your life wondering if any problems that you have are because you chose an inexperienced surgeon?

Tudpock (Jim)

Post Edited (Tudpock18) : 2/27/2011 6:20:13 AM (GMT-7)

Tud, I would have to agree with Clock on this one. Your post to our new friend did seem a bit on the harsh side. I am not disagreeing with the notion of having an experienced surgeon, if going  the surgery route, but that is still a subjective thing and a local thing to, to most men.  Time to support this new brother with his choice.  Won't mention names, but we have several key players here that did all the "right" things and got the best of the best, the brand name surgeon, the best hospital, the best care, and still ended up with poor results from surgery.  Even with what we teach here, PC still attacks us case by case, patient by patient, regardless of our best research.

David in SC

Post Edited (Purgatory) : 2/23/2011 9:24:48 PM (GMT-7)

clocknut said...
If someone comes to this forum newly diagnosed and looking for guidance, then I say hit them with every suggestion and advise them of every option. The more they hear, the better for them. From all that information, they can choose their own path for treatment.


But, when a man comes to the forum who has done his homework; has read the Walsh book; has considered the various treatment option; has chosen his surgeon; and is just one week away from treatment, that man deserves our support and best wishes, not criticism and dire predictions of regret and failure.



I don't have a "need" to support people who choose "inexperienced" doctors. My only "need" is to try to be helpful and supportive.



I guess maybe Yobiks is in the best position to let us know how he feels about his "welcome" here.

I'm sorry clock but when you see a man going under the knife the bare minimum 42 days after dx he may have done a few things but he has not really done his "homework". There should be some time for reflection in there too IMHO. Like I said many times I arrived here favoring surgery, then seeds, but wound up in a new clinical study. That happened because I took time studying and realizing that I may well wake up an elderly man with an old mans life in a very possible worse case scenario. It happens. If I had rushed to radical surgery 42 days after dx I'd be full of regrets right now. So someone suggesting the obvious, like experience does matter should not be criticized. I always say once some one makes up their mind go ahead without looking back and we all should support whatever decision is made. But when it's such a needless rush without time for reflection I don't see anything wrong with some experienced men here just saying whoa!! think about this a little longer and deeper. Don't be so charmed and persuaded by your initial urologist. Like was read her long ago MD does not stand for medical deity. There are no do overs and it's disturbing to me at least when you have men here who put more effort into buying a car than thinking about radical treatments that well could have major impact on the rest of their lives. 42 days after dx is just wrong and foolish. Many here have said post treatment that they wish they had taken more time in educating themselves. before deciding. The fact he still sees this a s a big "adventure' says it all. In fact it's an ordeal no one would ever wish on anyone else.

I have no idea how yobiks feels about his welcome here. I assume he came here for advice and comradery with his fellow PCa victims. My advice to everyone who comes here is to first take a deep breath and realize unless you're like a gleason 10 you have plenty of time to weigh all options and their effects on your life and family. Take your time deciding for there are no do overs after whatever treatment is chosen. Six weeks after dx is too soon most men are still in the get it out of me ASAP!!!!!!!! panic mode.

Tud, I'm not trying to provoke an argument, and I understand what you're saying, but if you re-read this string, Joe67, An38, John T, Ziggy, and you yourself had all advised yobiks earlier in the string about the importance of going slow, getting second opinions, confirming the biopsy slides, and examining other forms of treatment.

It's clear from his replies that yobiks had taken all these suggestions aboard and had decided to go ahead with his respected surgeon in the Portland, Oregon, area (not exactly the boondocks), that he had read the suggested materials, considered the other options, and had reached a position where he's comfortable with his choice.

Many opinions and suggestions had been offered, and yobiks replied he had made his decision. At that point, I think the appropriate response is to support him in that choice.    His body, his choice.  Simple as that.

yobiks said...
I guess it's time for me to weigh in---- 1st off I was asking about depends and sleeping with a cather not any of your opinions on the validity of my decision. I based my decision on the gleason numbers and stage of the cancer based on dre. Looking at the partin tables I like the odds at my end of the table rather than at the other end that some of you are faced with. If you are up to it surgery is still the gold standard. I haven't seen any evidence otherwise. I am expecting to live a very long time after this bump in the road.

yobiks I hope a year from now you feel the same. That said you are facing major surgery the fact that you think it's no more than a bump in the road shows you really have no idea what you are getting into. I didn't 6 weeks after dx either.


I hope all goes as expected for you I really do. Good luck

BTW I have no idea about depends or other pads. My time with a catheter was only 5 total days and I never had a day of incontinence after removal. I still have a functioning prostate except for approximately 60% loss of seminal fluid when ejaculating. Somehow I no longer see the same gold standard you do or I just demand more of it.

Post Edited (Ziggy9) : 2/24/2011 12:06:13 PM (GMT-7)

you're comparing the complexities of PCa treatmenst and/or active surveillance to looking at a horseshoe? Like I said you are still in the get it out of me!! panic mode. It's up to you but you really NEED to take more time deciding this. But good luck .

I'm done lecturing. You may want to consider what men say who have been here years and have seen and evaluated many Pca cases. Just listening to some who recently have had treatments and is still validating their choice is not the same as the voices of experience and observations. xxxxxxxxxxxxxxxxxxxxxxxxxxxxx


edited sentence, hitting below the belt. Remember what we're here for guys, don't get personal

Post Edited By Moderator (James C.) : 2/24/2011 1:00:32 PM (GMT-7)

Yobiks,

I will take the opportunity to answer your Depends question as an experienced user and DaVinci lab rat.

(My surgeon had not done the 'requisite number' of surgeries, and I didn't know there was one until long after surgery. I visited here the first time a couple of months after my surgery, and got some of the same feedback. I try to ignore that, because the vast majority of HW wants to help you.)

Back to the trip home.

I got a pair of loose exercise pants, and cut the seam at the knee so I could put the big catheter bag (empty and folded) through the hole. A pair of 'basketball pants' (snapped down the side) would accomplish the same thing.

I suffered bladder spasms constantly, and leaked badly around the catheter tube, so on the way home realized it was to be a very wet trip. I stopped at a pharmacy and went in, bag and all, and bought some "adjustable" depends. Those open on the sides with a velcro-like tape, so you can just strap one on without undressing completely. Glad there were no kids or police around.

When I went in the store I had the bag in a shopping bag - the girl at the door wanted to check the bag - my first exercise at really dark PCa humor - you can imagine how that went.

I used those when I went out with the catheter. In the car, you may want to get some 'underpads' - adsorbent disposable pads, to put in the car seat, chairs at home, and under the bedsheet.

I switched to the normal Depend pants once the catheter was out, with a booster guard (Walgreens mens guard is the most absorbent I found). To keep the cost down, I used a Walgreens womens overnight pad at night, but they were much too bulky for daytime use. That did keep me down to doing the sheets a few times a week instead of every morning.

If I didn't have a major flood during the day, I just used the same pant overnight.

Eventually I got to the Depends pant with Depend guard, then regular jockey shorts with Depend guard.

As to sleeping with the catheter, it was problematic. You can't crimp the tube, and the big bag has to be lower than your bladder at all times. Don't try to sleep with a leg bag. I had a big (14 liter) squatty bucket - put that on the floor, hung the cath bag inside. That way the valve stays upright, and if the drain clip comes loose (it likely will once or twice) at least you've peed the bucket instead of the floor.

I got several cheap pillows and used them to block my sides so I would not roll over on the tube.

The system worked well, and with the minimum of pain meds I slept through the night without major incidents.

All of this from my happily fading memory of life with Cath.

If I haven't already, let me offer another Welcome, and a wish for a good outcome. Sorry your first posting was rocky.

(edited typo)

I am a 64 year old RP survivor who had a PSA of 3.8, gleason of 3+3, and in fine health otherwise. I was somewhat disappointed in that my initial post PSA was not Zero as I expected. But it was only .1 . Over the last ten years I have had my PSA checked every 6 months and watched as it ever so slowly crept up to .2 and then .23 six months ago. Last week my PSA had jumped to .48 (a little more than double in 6 months). I was more worried than my surgeon, who was named last month one of the TOP 5 Urological Surgeons in the USA by his peers, and has performed over 6000 RP's.. so I knew I had made the right decision on who and where after I decided on treatment. ( I got 5 opinions prior to surgery,Memorial Sloan Kettering,Cleveland Clinic,Mayo Clinic, M D Anderson, and Johns Hopkins). He says I may have some cancer tissue in my prostate bed, or bladder neck, or worse case scenario, lymph nodes. He is going to re-test the PSA in 10 days to rule out false PSA score. If accurate, He said maybe we talk about a shot of beam radiation. I ruled that out 10 years ago on re-assurance rates and the possibility of the side effects. I have never had one minute of urine leakage and no erectile problems after 4 months..other than I now take Viagra to feel 18 again. This doubling really worries me and radiation therapy worries me even more. Anyone out there with a similar case history that is very positive results?

take a good breath and make certain you have done all research.
I found out I had similar results but my gleason was 3 + 2 = 5.
I did allot of research prior to making the decision. My Biopsy was in Feb and I didn't have surgery until June.

So study your options as well as look at your family history and PC. Those should be factors in your final decisions - more What IF.
IF RP doesn't work what are my options for future treatment.
IF RT how does that affect future options.
What type of side affects will result.
Talk with your partner and discuss affects of treatment.

If you go the route of RP, there is one thing which my Urologist as after though said, he wished I had gotten a VED so that I would exercise the blood flow through my penis. By doing that prior to surgery, it may have helped with ED after.

Good Luck and thoughts and prayers are with you

Tom