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Good luck to Ed and Trew

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Ed has a date with the Robot tomorrow and Trew has a doctor appt.

Wishing them both the best going forward!

Larry

havit2
Posts: 20
Joined: Jul 2010

best wishes to you both, my thoughts and prayers are with you

chitown
Posts: 90
Joined: Mar 2010

best wishes to both of your to win this fight...my high school motto was 'Evil exists in every corner of the world...fight a good fight'.

Trew
Posts: 891
Joined: Jan 2010

Larry, and everyone, thanks! This has been a confusing day for me. I have urinated 4 times already today. Some days, once I am up I may not urinate at all, all day- just dribble. I try and nothing comes out. Some days I can- very confusing. Tomorrow I hope to get some answers and move forward. I am very excited right now. I anticipate a recommendation from the doctor that will move me forward.

I do appreciate the support from this group. How real it really is! Thanks again.

griff 1
Posts: 114
Joined: Jun 2010

goodluck to both of you. keep us informed. griff

CharlieG's picture
CharlieG
Posts: 67
Joined: Mar 2010

Best of luck!

Trew
Posts: 891
Joined: Jan 2010

I hope Ed is doing well.

I posted this update in The Pad Diaries- I'll share it here, too. I am tired today. News was both good and bad. Here is the story:

I think I might want to just go away for awhile. Dr. Latini at UM is such a nice person, and very sympathic. And probbly no urethroplasty for me. The scar tissue is in the wrong place in an area that has been heavily hit by radiation and only a few doctors in the country might take on such a case.

The option would be to open up the stricture with a knife and then cath for 5 days or so and then back to self cath to see if that will contain the stricture/scar tissue. I am a mim of 6 months from an AUS, but maybe up to two years depending on how the strictues respond to the knifing. She is going to schedule that as soon as possible, maybe this coming week. The opening that is left is very narrow- her scope today could not even get close to my bladder but she did get a good X-ray with dye.

Worst case senario is I end up by-passing the urethra altogether and get an external bag- remote possibilty but she just wanted to mention it, in case.....

I was hoping for a straightforward urethroplasty and then on to the AUS. At this time the AUS is not even a certainity. Depends on how well the knifing works and few other factors. Somewhat sobbering day. So, looks like I will be back to being attached to a cath bag soon for a few days.

I am very tired. I don't know if I want to respond much more. This just goes on and on....

Everyone- thanks again for your support and well wishes. i know someday I will get a break for the better in all this.

-hiker

JR1949
Posts: 230
Joined: Jun 2009

Trew, Glad to hear that you have started the journey towards taking care of your problem.
Yes, someday you will get a break for the better in all of this. I know it has been tough for you and you have my sympathy. You have my support and well wishes. You continue to be in my thoughts and prayers.

JR

gumbyrun's picture
gumbyrun
Posts: 52
Joined: Dec 2009

Trew,
If you should end up with another cath, pack a tube of neosporin in your overnight bag. Remember to wash the tube a few times a day and I coated mine with the neosporin to accommodate movement.
Mike

Trew
Posts: 891
Joined: Jan 2010

I hope Ed is doing well today.

I must have crashed and burned pretty hard last night- I have been rather slow on the upbound today. I was hoping U of M would call today with a hospital date for me- but it didn't happen today.

Larry, thanks for the note. I was on the chat today for awhile but overall, this is just a down and recovery day for me. I must confess, a few times, for the first time, I have sort of wished I was born a female. Please forgive me for that mental laspe.

Also, Dr. LaTini told me every time the urethra is shortened the penis is shorten also by that much. We were looking at maybe (but ruled out for now)taking a section of the urethra out.

Maybe tomorrow UM will call. But there are no quick fixes for me. This is going to take months and I think I now have a new, a 3rd, uro looking after me.

so it goes.....

Best wishes to Ed- you do have all my sympathies today.

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

Im on the other side now. I actually got back home around 5 pm last night so the entire process including the drive was only 36 hours. I do feel alot better today than yesterday. I will say that overall there is more pain than what I expected, but I do have meds for that. The doctor said everything went great "very easy" everything looked clean and he is very conident, and his nurse was in contact wife my wife the entire time on the cell phone. I asked him about the nerve sparing and he said they peeled off easy. This might sound funny but my worst pain is not in the surgery area, it is on tops of my shoulders. My shoulders hurt so bad it is very difficult to get in and out of the recliner and the hospital bed as well. As for the recliner...it is working out great for me. It's like a small campsite setup there and my wife is taking very good care of me. I am having a little trouble with BM but did get a small one acomplished last night. I was asking for food right after surgery and there was no diet restriction the next day. I think I will stay on soft foods right now but I could not resist the eggs and pancakes yesterday morning.
The ride home in the car was very painful and when I got home I felt beat up, but we did fill the meds at the hospital before we left so I had them as soon as I hit the recliner.
I have an appointment thursday to remove the cath amd I am looking forward to that for a couple of reasons. Of course I want the hassle of it gone, but the other thing is that I want to find out if there are any continence issues.
Everything actually looks pretty normal down there. I cant see any shrinking yet and the penis appears to be in line where it used to be..
Time for me to get back to the chair and watch some new, take a pill, get a nap.

Thanks Larry for all kind words and thoughts and to everyone here.

Trew, I want to thank you for your concerns and prayers for me. It takes a special person to care for someone they have not met when they have issues such as yours going on. Although your appointment did not go exactly as you wished, it does sound like there is a plan in place and you have a good doc. Good luck Trew.

Ed

Trew
Posts: 891
Joined: Jan 2010

Ed, welcome home. It looks like everything worked out ok for you. I remember well the recliner camp-out.

You are now on the mend.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Ed, Glad you are now on the healing side! The shoulder pain is normal. They put you in a semi upside down position for the surgery so their is lots of weight bearing on the shoulder during surgery. A few days and that will be gone!
Push the fluids and walk. Don't worry if you have some urinary problems once the cath comes out. Hoping you are lucky like I was and only used 1 pad the first day and that was that. But It might take a few weeks or even a month or two.

If you need to chat...you got my number!

larry

JR1949
Posts: 230
Joined: Jun 2009

Ed, It will take some time for the healing. Good news is that it does get better. Sounds like you've got some good help from your wife. Just take it easy and enjoy the rest time.

JR

griff 1
Posts: 114
Joined: Jun 2010

HOW ARE YOU DOING???? GRIFF

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

I am doing great. I went back to work today. I am basically dry other than a few drips when I sit wrong. My path came back great, less than 5% total in the gland and everything clear for margins. It was more painful than I planned but good drugs fixed that. My worst pain was in the tops of my shoulders. I havent really started on the ED front but will be getting into that real soon. Both of the bundles were spared so I am hopeful in that department as well.

Post Op Path:
Gleason 3+3=6
Tumor involves left lobe only
Tumor constitutes less than 5% of gland volumne
No vascular or neural invasion detected
No capsular invasion detected
Distal urethral margin of resection free of tumor
Proximinal urethral margin of resection free of tumor
Radial margin of resection free of tumor
Seminal vesicles uninvolved by carcinoma
TM stage T2a (unilateral less than 1/2 of one side), NX, MX
ALL Margins uninvolved
Extra Porsaatic extension: Absent

gumbyrun's picture
gumbyrun
Posts: 52
Joined: Dec 2009

Congrats on being here. Back to work so soon? Randy - we got another rock star on our hands.
My greatest pain (other than an elyis -spelling?) was in my quads due to the position during the surgery.
I'm 6 months post daVinci and dry 99% of the time. Wear tight underwear!
God bless and spread the word to others to keep an eye on their numbers...and if they should join the brotherhood, check out this website.
Mike

Trew
Posts: 891
Joined: Jan 2010

Sometimes I am so envious of others.

I am happy for your success, don't get me wrong, but I never imagined 18 months later I would still be trying to get things fixed.

Tomorrow is an outpatient procedure. The doctor wants real up clsoe and personal view of what we are dealing with. Ideally, maybe I can get cleared for the urethroplasty and move on. Realisticly, well, I am a bit envious of many of you. It is a strange emotion for me and it makes me feel guilty at times, but it is almost too much for me to read how well many are doing and I am hoping to have an urethra when this is all done.

Well, tonight I took a xanax and its time for bed. I'll be brave and couragous tomorrow and face what comes. What else is there to do?

gumbyrun's picture
gumbyrun
Posts: 52
Joined: Dec 2009

On the other end of the spectrum...
I believe this site is about about personal sharing and healing so here goes.
I remember walking through the parking garage into the Cancer Center at Allegheny General in Pitt for my first appointment with the surgical urologist. A few cars passed us by and I saw a mom in one car and a 20-something in the next, both wearing head scarves over presumably hairless heads from chemo. I said to my wife, Becky, "I don't belong here...I'm not sick enough. I haven't paid my dues. " I didn't mean to imply that I lived a righteous life, etc., but that I sort of felt, and continue to feel, that I am sort of in the minor league of cancers. Please please please, I don't mean to minimize what we have been through and continue to go through.
There is no doubt that I have changed mentally and emotionally since my diagnose and surgery. I referred to it to a friend as a "brain toilet flush."
I leak. I only have good sex with Cialis. I sweat at least a gallon more a day then before the surgery. But, my stress level is down. I certainly don't go off the handle like pre-PC.
But I still feel guilty at times. I'm just sayin'

On a lighter note, I've suffered from smallcox all my life and since the surgery my testicles hang lower than my joint. Go figure.

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Gumbyrun, I got a chuckle from the last sentence of your post. We can't lose our sense of humor.
Myself-----after surgery & radiation---I went from a 9mm to a BB gun.

Trew
Posts: 891
Joined: Jan 2010

At my first uro's office I only saw the PA after surgery. "He" would tell me it was only my imagination. "He" was one of the reasons i quit that doctor. And size has changed since surgery, hormone shots and radiation. I have this picture of todays procedure- evryone one in the OR room will be a female- I know the doctor is. And it is a bit embrassing. But I am basic a eunuch now, anyway, so what is the fuss about? (soft crying sounds........)

I do appreciate the candid commentary today.

And there is always someone worse off, that is true. It doens't diminish the fact that those with PC have a life changing experience, too, that hangs over our heads forever. Right now we don't look like the worst cases of ca- but we have the germ and further on down the line we could be the worst cases, too. I have seen end stage PCa and its not pretty.
Its as hard and any cancer out there.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

After being diagnosed, and during my research into the best options (and the consequences), I found a study that said a radical prostatectomy results in a decrease of one inch to your manhood. I can't recall the specific study and I don't believe it differentiated between open and robotic surgery. For weeks after the surgery, I joked with my wife that "it" looked like a turtle..... and after what it's been through, it wasn't comin' out.

Trew
Posts: 891
Joined: Jan 2010

First of all I am very tired,but rerstless, too.

If you want to bulk up a bit all you need to do is have a garden hose inserted in the male part for whatever time it takes and you will definitely see some bulking up. I am on vicodin right now, so I can look at this with a little humor. Of course, "it" is extremely painful right now and i have a very large cath coming out of "it."

Good news- I am passing a lot of blood. The cath bag is bright red. While I was in recovery the Doctor told my wife that was a good sgin- it indicated healthy tissue underneath the scarring. I met with her on Wednesday to go to the next step of treatment and get the cath out.

So at this early stage I'm a bit more hopeful.

But also, really good news- Dr Latini got a very good look at the bladder and no signs of any kind of any cancer.

Enough for now. I am tired and sore and need to sleep. I just thought some of you would like to know.

And yes, Dr Latini told me you do lose size- about an inch or so. Anytime you take a section from the urethra it comes of the end. Sorry about that, for all of us who have had surgery. Proton treratment- well, just another reason to go that way if possible.

Everyone, just thanks, ok?

Oh, one other thing, my throat is really sore, too.

mrspjd
Posts: 688
Joined: Apr 2010

Trew,
I thought about you many times today, as I'm sure others did as well. My heart goes out to you and all you've endured. I hope you know that by sharing your challenging PCa story with both the sadness and humor you experienced, you have touched & educated many here, and by doing so, you have also shown that you have the strength to overcome this.
mrspjd

Trew
Posts: 891
Joined: Jan 2010

Mrspjd, thank-you. This is a vicodin day, so I am sort of in and out of it. Mrs Trew is a gem to me like you are to your Mr. And, I know this may be difficult to understand for some, the cath is actually a blessing. I am completely relieved of the stress leaking causes. No worries, no pds, I am relaxed and comfortable and, Yes, I am enjoying having the cath in. It feels more normal than the constant dripping I put up with.

Dr. Latini told Mrs Trew after surgery my urethra was very very narrowed. Not much of an opening left. I could tell that myself.

Well, I just took a half vicodin about 1/2 hour ago- it's about time for another nap.

And I am drinking all the water I want for the first time in months. This cath is a good thing. I can drink and sleep and not worry about a thing. this is such a nice break.

And I never thought I would be saying something like that before.

And yes, I do like vicodin. :)

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

Trew, So glad to hear there seems to be progress made and you are comfortable. Make the best of these cath days and try to catch up on your rest. This is the start of better days for you. Thanks for keeping us up to date.

Trew
Posts: 891
Joined: Jan 2010

Whenever the urehtra is cleared of strictures the leaking increases greatly.

I called the U of MI office this morning and asked if I could keep the cath in for another week. maybe it might help hold the strictures from reforming? I don't know, but thought I would ask.

I just know, and Dr Latini told me, too, that when the cath comes out expect a lot more leaking.

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