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Posted 10/5/2010 5:15 PM (GMT 0)
Hi INWn,

Welcome to the forum-sorry you have to be here, but it's a great resource with helpful, friendly people. My husband had surgery in Aug. and the friends I made here really helped us thru it. Good luck on your surgery-see you on the other side!

Renee
Posted 10/5/2010 6:37 PM (GMT 0)
INWM - I was forbidden to drive for a couple of weeks after the cath came out, then suggested that I not for a while longer. I could have actually driven, but if you take any real pain meds it qualifies you as DUI in most states if you are involved in an accident, regardless of who was at fault. Also, any emergency turn or stop may have strain that tears loose a suture. Be sure to check with the surgeon. They will have formal advice in your file, so don't just ignore them. It could haunt you if there was a problem.

Ger - back off the Kegels a little if they are causing pain (I had that issue as well). If you strain the muscles it is counter-productive.

Posted 10/6/2010 2:56 AM (GMT 0)
Aimzee wrote "Pipedream this must be difficult to read that 20 or more men were given a choice that Tim was not. Hopefully, he will be one who gets his catheter out in a week. I am sorry it has worked out like this. I am surprised the doctor didn't discuss this BEFORE the surgery. We knew about the two bags."

This whole bag controversy has just been bizarre. Virtually everything having to do with this surgery has gone better than we expected except for this. I walked around Pittsburgh for a long time yesterday, asked at a couple of pharmacies and could not locate a night bag. So we had one more night of getting up. Since the doctor had told us at yesterday's meeting to set the alarm for 4 hours - that's what we did. In way less than 4 hours, the leg bag was completely full - just looked ready to bust....but fortunately, it didn't! Tim was up twice in the night to empty the bag.

Today we drove home and before we did anything else, I went to the local medical supply store and for $9.19 bought a 2000 ml night bag! No questions were asked. I was shown several models - but what do I know? I bought one that looked similar to the one he had in the hospital. We are planning on a good night's sleep tonight!! Hurray!

They did not have extension tubing or a thigh band but I think I can jury rig something to hold the catheter in place with the night bag. The catheter is scheduled to come out on October 12th - one week from tomorrow. The PA we saw yesterday said several times that this is the worst part of the surgery and I have to agree but we are learning little tricks and tips to make it a little more bearable.

To address Aimzee's comment about being surprised things were not discussed with us beforehand - The surgeon discussed virtually nothing with us prior to the surgery. We had a 15 minute discussion with him in our one and only consultation with him two months prior to the surgery. That was on the day we met with him and a radiation oncologist to discuss treatment options. So treatment had not even been decided on at that point.

I called his nurse with some questions about two weeks ago and she offered to set up an appointment to talk with him but as it would entail 6 hours of driving for another 10 or 15 minute consultation, I just took what the nurse had to offer in response to the questions we had. I thought he would talk with us prior to beginning the surgery on the day of the operation. However, I was separated from Tim early in the admission process before he met with the anesthesiologist or saw the surgeon. The surgeon met with me for about 5 minutes after the surgery. He stopped in Tim's room for a couple of minutes the day of surgery. His associates saw Tim the next day and the day of discharge.

I believe our surgeon is extremely skilled. However, he lacks something in patient communication. I've been trying to analyze it and I think that this surgery is so routine for him and he is so good at it that he sees no need to expend a great deal of energy on explaining things or taking time to know his patients. He knows he brings vast experience to the job, he is extremely confident in his technique and much sought after. We received rave reviews about his bedside manner from our local urologist and from one of his former patients, I'm sure that's why we expected more from him. So though we are disappointed in his interpersonal skills, bottom line, we got the most important thing we were seeking - skillful surgery and what so far is a rapid recovery with little pain.

It cannot be emphasized enough how helpful all the information gathered from the members of this forum has been. Without all of you, I don't know what we would have done.
Posted 10/6/2010 3:15 AM (GMT 0)
Pipedream,

Go to Walgreens and look for "tender tape" product code 86-9560 - upc code 3 11917 06994 4. This is a lightweight bandage that adheres on itself. I took one of these (6 ft. long), cut it in half, and used one above the catheter Y connector, and one below to keep the tube fixed to my leg. Don't make it tight enough to restrict circulation.

The Johnson&Johnson equivalent (I've seen at Walgreens, CVS, grocery store) is called "Coach Self-adhesive elastic bandage" J&J code 7928, upc 3 8137 007928 6.

They are $3 - $5. If there is no leakage or reason to do anything other than rise them, you may get 2 or 3 uses each.

Worked for me - not a perfect solution, but my hospital-issue wonder holders fell apart immediately.

(This is not an adhesive tape - it has a velcro-like surface that adheres to itself.)

Posted 10/6/2010 4:24 PM (GMT 0)
Thanks 142 - I will check for one of those items today when I get out and about. For last night we took the rubber band (with holes & button connection) from the leg bag and used it to hold the catheter to Tim's thigh throughout the night.

Tim got 9 hours of sleep and the 2000 ML bag was completely full when I woke him this morning. So with the leg bag he would have had to be up at least 3 times during the night (the 4th emptying being when he arose for the day) as it only holds 500 ml....even then timing things so he was up soon enough to empty it but not too soon would have meant for another miserable night. Yay! Hurrah! - what a difference a good night's sleep means! He is feeling much better today.

Even though we are going ADO (against doctor's orders) in refusing to settle for the leg bag only, I think we did the right thing. We are being meticulous with cleaning and hygiene when changing back and forth. Hopefully, it will be fine.
Posted 10/7/2010 6:54 AM (GMT 0)
INWM, I hope your surgery went well and there were no big surprises.  I hope you will let us know how it went.  May you road to recovery be uneventful!

Ger, no one can tell you not to worry.  It's human nature.  However, in most cases things go smoothly.  Take whatever advice you find useful and go forward with confidence.  You will be in our thoughts and prayers.  It will be so good to be on the other side and have the cancer removed!

Pipedream, I came here just to find out what you and Tim ended up doing.  You are doing what it seems 99% of the guys have done.  What a difference 9 hours of sleep can make, huh?  You are doing what is necessary to prevent infection.  May Tim continue on a road to speedy recovery!

The conference time with the urologist was 1 1/2 hours, then we had a 45 minute conference with the surgeon, and one week before there was another 15 minute conference.  I am sorry Tim and you didn't have this advantage.  It is good to have a place to come for support.  When the catherer is taken out, it will be a whole new ballgame.

Take care folks,

Aimzee

 

Posted 10/7/2010 2:55 PM (GMT 0)
Aimzee wrote: The conference time with the urologist was 1 1/2 hours, then we had a 45 minute conference with the surgeon, and one week before there was another 15 minute conference.

Well, your 2 1/2 hours with the doctors were 2 hours more than we had....the local urologist gave us about 15 minutes, the surgeon another 15 minutes - all of which was prior to our decision as to what treatment we would seek. We did have some time with the urologist's PA (also pre-decision) and phone time with the surgeon's nurse (post decision). Still, altogether, I doubt it was more than 1 hour total over the three months from diagnosis to surgery. You can see why HW has been an invaluable resource for us.

We had another good night last night. Thanks for the encouraging words about life after catheter removal. Generally at our ages, we don't wish away days but this is an exception....Tuesday can't come soon enough. turn
Posted 10/8/2010 2:58 AM (GMT 0)

Pipedream, I received encouragement from several of the gentlemen who post here.  When we got back home from the catherer removal, Ron said he felt like a new man!  Now, tomorrow (Friday) he will be getting his PSA done.  Getting a great big ZERO will be so reassuring.  Soon, Tim will also be joining that group!

Aimzee

Posted 10/9/2010 3:08 AM (GMT 0)
Things had been more or less the same for the last two days and then, wham!, today Tim has a lot of pain in his testicles and scrotum area. I was at his office today and when I returned about 7:30 PM, he was white-faced with pain. He had taken an Advil (we did not get the stronger pain prescription filled as he didn't think he would need it) but apparently let the pain get away from him before doing so. Soft moans, could hardly move. Standing, sitting, walking - all really painful. Turns out he had been sitting for a few hours this afternoon at the computer without his donut pillow cushioning things. Do you think that could cause that kind of pain? It just seems odd after a week of relatively low levels of discomfort to suddenly have severe pain like this - we thought the worst was behind him.
Posted 10/9/2010 3:39 AM (GMT 0)
Pipedream,

I'll have to start a rule list. Here goes:

Rule #1 - fill all the Prescriptions, on the way home from the doc, always, regardless - the piece of paper is useless at midnight when you need the pills and the pharmacy is closed. Be happy if you throw the pills away in a year, but between now and then, they are tools in reserve.

Rule #2 - six months out from surgery you can start thinking there is a trend. I am just days short of one year out from DaVinci, and one hour in a bad chair can still be beyond ugly.

Posted 10/9/2010 8:50 AM (GMT 0)
Pipedream, my husband has that pain all the time but it is unrelated to the surgery.  I have read others experiencing it.  Hopefully, a break this weekend will help with the pain!  Ron got a PSA test today, so he is hoping to join the ZERO club.

I hope Tim finds the donut pillow helpful!

Aimzee

Posted 10/9/2010 5:54 PM (GMT 0)
I second 142's short list. #2 is one of the things that the med. lit. just doesn't prepare you for with PCa - the length of time before many feel comfortable living as they did before RP. We attended mass for the first time in 3 months thinking that my husband could handle a pew post-surg for the first time. He still felt uncomfortable and had to shift "cheek to cheek" to get through the service. Depressing to hear you're still feeling the hard chairs hard, 142...
Posted 10/9/2010 6:10 PM (GMT 0)
I have yet to have the surgery and my butt can only take a hard chair or 30+_ minutes. When on the computer i always sit on a doughnut. Tuesday is coming fast both of us are starting to get nervous.
Posted 10/9/2010 6:31 PM (GMT 0)
Ger,

Hang in there - the worst of the "anticipation" (except the liquid diet and bowel prep) is done.

We will be watching for your reports.

 

Posted 10/10/2010 7:29 AM (GMT 0)

Ger, I know Ron would agree with 142.  Sending positive vibes your way, and I will mention what was told to us.  Enjoy these last two days with your wife before you have to prep.  The night before the prep was one of our closest nights ever.  Try to enjoy this time with her!

Aimzee

Posted 10/11/2010 9:48 PM (GMT 0)
Prep just about done. Clean out the navel one more time drink more water maybe walk the dogs then it's off to bed. Hospital called they want me there at 1 PM. Wife will take the dogs to the kennel in the morning. If I have the energy I'll do a few things to prepare for the possible arrival of hurricane Paula some time next week. My rash is back I'm sure it will cause a few phone calls from the hospital staff to my GP and urologist to get the approval for the go ahead.
At this point I'm not even nervous just want to hurry up and get it over with.
Posted 10/11/2010 9:59 PM (GMT 0)
Ger42 - I hope everything goes smoothly for you. It will be good to have the surgery over with. The anticipation almost made us (well...me mostly) crazy - fortunately, the last two days before surgery were so busy we didn't have too much time to worry. It sounds as if you are in the same place today. Good Luck!

While you are heading for the hospital tomorrow, we head to Pittsburgh for Tim's follow-up appointment - hoping for a good pathology report - and to have the catheter removed at last!!
Posted 10/12/2010 11:58 AM (GMT 0)
The big day is finally here and we are both a bit anxious. Gerry's tired from all the cleaning out. His last meal was Sunday breakfast. He's not big on broth and jello to start with so this diet was not created for him. I'll be getting the dogs to the kennel by 10:00 and we need to be at the hospital at 1:00. This is going to be one long day. Surgery is scheduled for 3:00. I will post when I get home to let you know how he did.

Thanks to everyone on all the great tips on what to do/not do. What to wear and what to watch for. I don't write but I do come in and read everyday.

pipedream, good luck on the trip to Pittsburgh and we'll be praying for Tim that the pathology report is a good one.

Ger42's wife
Posted 10/12/2010 1:12 PM (GMT 0)
Ger and Wife,

Best of luck today on the surgery-I know it's been a long road and you will be so relieved when it's over. The rehab walking will be better in Oct. ( we live in Fl. too-Vero Beach) and it was dreadful in August when my husband had surgery. So, having to wait has a silver lining. See you on the other side.

All the best,

Renee
Posted 10/13/2010 1:50 AM (GMT 0)
Today was a GREAT day! Catheter is out and Tim feels like a new man! What's a little leakage???? We can attest, at least for right now, it is NO BIG DEAL!

And the pathology report is as good as we could have hoped - pertinent information as follows:

PROSTATE, Prostatectomy:
1. Adenocarcinoma, Gleason Grade 7 (3 + 4) of 10, involving both lobes of prostate, and 20% of the tissue
2. Tumor confined to prostate gland
3. Resection margins free of malignancy
4. Benign seminal vesicles

Synopsis
Prostate Gland: Radical Prostatectomy
Prostate Size:
Weight: 19 grams
Size: 4 x 3.6 x 2.5 cm
Lymph Node Sampling: No lymph nodes present
Histologic Type: Adenocarcinoma (acinar, not otherwise specified)
Histologic grade: Primary pattern: Grade 3
Secondary Pattern: Grade 4
Total Gleason score: 7
Tumor quantitation: Tumor size (dominant nodule): Greatest dimension: 17mm
Extraprostatic extension: not identified
Seminal Vesicle invasion: Not identified
Margins: Margins uninvolved by invasive carcinoma
Lymph-Vascular Invasion: Not assessed
Perineural invasion: Present

Primary tumor: pT2c, bilateral disease
Regional Lymph Nodes: pNX: Cannot be assessed
Distant Metastasis: Not applicable
Additional Pathologic Findings: High-grade prostatic intraepithelial neoplasia (PIN)



We are relieved that the post-surgery path report did not upgrade the biopsy report - may have even downgraded it a bit as the path reports notes only 3+4 and does not indicate 4+3 as did some of the biopsy samples.

According to what we were told today....the surgery should be all the treatment that is necessary. They expect Tim's PSA should be very low when it is tested 6 weeks post surgery and should remain there. PSA testing will be every 3 months the first year; then every 6 months for 5 years; then every year until the 10 year mark as long as the level remain virtually undetectable.

We were given instruction on kegel exercises. Work on continence is next on the agenda. Also given samples and a prescription for Cialis and told to take 1/2 tablet at night 2 or 3 times a week just to keep blood flowing where it is supposed to (blush) but not to expect anything else for a while. In fact, we were told to be patient, that it takes 18 months for healing to be complete - so the end result won't be known for that long. If we are not satisfied with the state of things, then additional help will be available which will be discussed with us as appropriate.

The surgeon's PA conducted the entire appointment today - from removing the staples, catheter and education. We informed her in detail about our experience concerning the lack of a night bag and how not having one provided affected the first two nights after discharge. The extra fluid pumped into Tim during the hospitalization was gradually being processed out over the first 4 or 5 days and the leg bag was entirely inadequate for night time use even after the excess fluid was gone. So she knows that we purchased one as soon as we arrived back in our home town, knows how we feel inadequately served by the stance taken by the doctors on this issue - and how wrong the doctor was who instructed us to "set the alarm for 4 hours and you'll only have to get up once a night to empty the leg bag". Whether it will do any good, I don't know. But at some point, I may write a letter to the doctors letting them know just how strongly we feel about this and how it adversely affected and created unnecessary additional stress during an already "way too stressful" time.

That being said....it now seems relatively minor and we are rejoicing over the good report today and looking forward to completing the healing process and moving forward. Thanks again for all the help, well wishes and for being here for us.

I'm looking forward to hearing how things went for Ger and praying for a good result.
Posted 10/13/2010 3:34 AM (GMT 0)
I just got in from the hospital. Long hard day for both of us. The surgery started an hour late, scheduled for 3:00 but started at 4:00. It lasted for almost 3 hours. Almost an hour and a half in recovery. about a half hour before he hit ICU. The surgery went well and the doctor said he didn't see anything but we won't have the biopsy report until Monday. Gerry said his pain level is 7 out of 10 so he's hitting the morphine button like he hits the remote (have to keep things light). Luckily his nurse in ICU is an angel and let me stay with him even though visitors are supposed to leave at 8:00. Will update tomorrow night when hopefully I'll be more awake.

pipedream - happy to hear that Tim got rid of the catheter and that the surgery should be all the treatment he needs.
Posted 10/13/2010 12:30 PM (GMT 0)
Pipedream,

Glad to hear Tim had a good path report and he got the dreaded cath out-that is a big step.

Ger,

Welcome to the other side!

Renee
Posted 10/15/2010 2:43 AM (GMT 0)
Gerry was supposed to be coming home early afternoon today, but he suffered a set back. He started running a low grade fever last night (100.5). His blood pressure was running up to 160/93 all day today. His pain level increased and then he started to vomit/dry heave early this afternoon. The surgeon stopped at 5:00 and told him he had to stay another night. You could see how much pain he was in by looking at his face. Even after the pain pills, when he would doze off for a short while, the pain was very evident. The pain never diminished. I felt terrible leaving him at eight. I was relieved to see Nurse Judy from the first night there. God bless her!! I'm praying for a better day tomorrow and a trip home. They are decreasing the pain medication but giving it every three hours hoping that it will build up enough to ease the pain and spasms.
Posted 10/15/2010 4:48 AM (GMT 0)
Talked to the nurse yesterday, She scheduled me for October 22nd for LAP RP in Roseville. I had been told that they were booking in November by my surgeon last month. I took the week off and am getting things in order (although I went into the office today and chewed out those who needed it). I'll be ready next week.

Thanks for all the info from all who posted here. It is a wealth of knowledge and experiance as well as opinions. I'll be putting my two cents in when I can.

Mike

Posted 10/16/2010 7:52 PM (GMT 0)
Gerry finally got home from the hospital at 2:00 today. It is unbelievable how great it is to have him home. Once he walked in the door it seemed that he felt so much better. He's sleeping which doesn't surprise me. He was only sleeping for very short periods of time at the hospital due to the pain. He was one of the few that develops a problem with the Illium which caused him to have to stay for 4 days. They weren't even sure if they were going to let him out today but fortunately he held down his jello so home we went. The hospital is no place to recover! The nurses were actually very good which made the long stay bearable.

The GREAT NEWS is that his biopsy came back with no signs of cancer on the margins. We go back to see the surgeon on Tuesday and hopefully the drain will come out. That will be a blessing.

Good luck on the 22nd Mike. We'll keep you in our thoughts and prayers.

Renee - thanks for welcoming us to the other side. It felt like we got stuck on the bridge for a while but now things are looking up.
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