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Posted 11/17/2008 1:30 AM (GMT 0)
Okay, you wonderful folks! You got us through the meeting with the doctor with regard to our treatment options. I asked you for questions and I asked every single one of them of the doctor. His reaction to the questions? He was glad to get them and more than happy to answer them (including the one about why we should stick with him rather than going to Johns Hopkins).

My husband has opted for the DaVinci surgery, which will take place on November 24th. I have a few questions in preparation for the surgery. I'll be quick. These things have been discussed before but I could not locate them. If you can point me to the link rather than answering the questions again, that's fine.

1. What's this band or strap people have discussed with regard to the catheter bag? Where can I get that? (I have a broken down wetsuit that I no longer use. Can I cut up the neoprene and make a strap? I am not handy with a needle and thread so don't expect me to do anything extensive).

2. With respect to the catheter, boxer briefs?

3. What is the name/brand of the male continence pads?

Quick update: Remember I worried that my husband would be laid off before we'd even treated the cancer? That did, in fact, occur. They called him with the news on the day we were going to the doctor to find out the results of the CT and bone scans. His medical insurance runs out at the end of November. We cannot afford COBRA at the going rate. However, his company claims it will give him six more months of insurance at the same rate he paid as an employee. That will help. We can afford the normal COBRA payments for him alone. There is no way we can afford it for the three of us (him, me and our son). Our dog died a week ago. That didn't help matters either. I thought he hadn't even liked our dog. I was wrong. He shed a few tears too. I'm working on getting another dog in the house (through a rescue organization) because I think it will help to take my husband's mind off of his recovery. He can't wallow if he's got to take the dog for a walk and give it the attention it needs.

Thanks in advance for your answers!
Posted 11/17/2008 1:43 AM (GMT 0)
I did find the link I was looking for! It took a bit of looking around. Thanks! As you were.
Posted 11/17/2008 2:02 AM (GMT 0)

Hi! Glad our suggestions could be of help.

I used Tena Serenity Brand Male Guards. They are made to fit perfectly in the front of brief type underwear. (Not Boxers). Other than being a bit warm here in the California desert in July, they were perfect for me. They came from Rite Aid. Send me your address and I'll send you a brand new unopened package if you want. If he uses brief underwear that is. They would not work in boxers. I kept getting newspaper coupons for buy one get one free and bought too many!!! (A good problem!) Towards the end I just used panti liners of my wifes then graduated to nothing!!

I had no problems with the catheter tube and brief shorts. The tubing was flexible enough it just snaked along my leg.

And my hospital gave me skin clamps for my thigh and then the leg bag had velcro straps that worked very well.

Keep looking up! We'll help you get to the other side of the bridge!

Bill

Posted 11/17/2008 2:09 AM (GMT 0)
Thanks, Bill! I'm trying to keep it together. He is still down and pretty much out of it emotionally. The doctor had a long talk with him at the last appointment. I don't think it helped (other than to make me feel thankful for having him as my husband's doctor through all of this). All I can do is keep reading and trying to help him be prepared for surgery. He's at the "let's get it over with already" stage but I can't say his attitude is a positive one. It's one of resignation. Anyway, he doesn't wear brief. He's a boxer brief guy but I appreciate your offer of the box you still have.

By the way, we're in Los Angeles.
Posted 11/17/2008 2:10 AM (GMT 0)
Hey SS, I'm a brief guy and I used the Depends Male Guards. Sorry you had to find us but we are here for support if you need us.
KW
Posted 11/17/2008 2:10 AM (GMT 0)
Good to hear from you, SurfingSpouse!  I'm so sorry to hear about your husband's layoff, especially during this time when insurance coverage is essential. 

Here's my answers to your questions:

1. What's this band or strap people have discussed with regard to the catheter bag? Where can I get that? (I have a broken down wetsuit that I no longer use. Can I cut up the neoprene and make a strap? I am not handy with a needle and thread so don't expect me to do anything extensive). When your husband has the catheter inserted, the hospital should give you a velcro strap to use to hold the tubing and bag during the day.  It takes a little adjusting to get it just right, but worth fiddling around with to make it more comfortable. Make sure that someone competent to instruct you on the use of the catheter bags (day and night) instructs you. 

2. With respect to the catheter, boxer briefs?  I found it more comfortable with the looser boxer briefs.

3. What is the name/brand of the male continence pads? I got a big industrial-size box of Depends at Costco.  I never did make it thru a whole box before I didn't need them anymore.  I used the smaller brief-liner pads for awhile after that.  You can purchase them at any drug store.

 

 



Posted 11/17/2008 2:03 PM (GMT 0)
It seems when it rains it pours. I am so sorry you are having multiple problems at once. Just take one thing at a time and you will overcome each one.

When you have the surgery they will likely give you two bags. The big bag holds more and is generally used at night. Some people prefer just to use this bag all the time. A smaller bag will also be provided and this bag has a strap that can be attached to the inside of the leg. In this manner your hubby can wear the bag unknowing to anyone else and be mobile. You can wear pants and no one will be the wiser. This bag of course has to be emptied more often. They will also give you some tape to strap the tube running to the bag to his leg so it will not flop around or pull. I found this most useful at night as I do a lot of rolling around.

I wore boxers before I had surgery but found them not to work afterwards. I would suggest standard briefs beginning with the catheter. After the catheter is removed he will need to wear standard briefs to keep the pads in place. As far as pads are concerned there are the standard depends brand, but I have found the local grocery store generic brand just as good for less money. I am very sure you will find them to all be similar.

Soon all this will be second nature to you, and hey it is no big deal. Keep your chin up!
RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.1 10/30/2008
Posted 11/17/2008 2:21 PM (GMT 0)
I am sorry for the peripheral trouble you have been having.

Regarding the "briefs," I found proper selection to be critical to maintaining a reasonably active life while wearing the catheter.

After much trial and error (mostly error), I found that athletic compression shorts worked best for me. (I had to have them one or two sizes larger than normal or they would have been too tight.) These are the type of shorts that many young athletes wear under their normal shorts.

I discovered that the compression shorts held the tube (and associated body parts) in just the right place as I walked, or climbed stairs. Since the fabric is stretchy and tight . . . I was able to minimize the amount of "tube" movement, and walk quite comfortably.

The downside, since these are made to be tight . . . I had to place a piece of cloth between the waistband and the incision to better protect it. (and again, I had to buy them a bit larger than normal)

Further, I found that anything with a fly was worse than a plain flat front. It seems sometimes the fly would move the tube (and again associated body parts) from where I placed them.

The reason briefs did not work for me . . . they were just too brief, the compression shorts go about 1/2 way down the thigh.

I was able to be quite active this way.

Cheers
Posted 11/17/2008 5:41 PM (GMT 0)
Surfing spouse-

Like RB said, "when it rains, it pours". I am hoping your days get easier soon and sending you strength! It sounds like you are on top of things and your hubby is in wonderful hands. A couple of additional items we picked up for the recovery were those large pads you can use on the bed. I didn't want my dad to worry about leaking during the night once the catheter was out. Also, don't be afraid to ask the nurses for extra straps, we found the nurses to be very helpful. One of the veteran members had recommended a robe for the hospital and we had picked one up for my dad that he used in his recovery. Once he had healed he got rid of it. I think it was a constant reminder. So, if you can find an inexpensive robe, with a pocket (so you can hang the bag), it might be useful. Everyone is different, so keep us posted and let us know how we can help! I hope the holiday season gives you peace and cheer! All the best!
Posted 11/18/2008 5:11 PM (GMT 0)

Some responses based on my experiences in September, 2008:

1. What's this band or strap people have discussed with regard to the catheter bag? Where can I get that? (I have a broken down wetsuit that I no longer use. Can I cut up the neoprene and make a strap? I am not handy with a needle and thread so don't expect me to do anything extensive).

Before I left the hospital, a day and a half after surgery, the hospital required that I sit and watch a 15-20 minute video (on the room TV) that illustrated how to attach the catheter bag and care for/clean it.  My nurse attached the first bag for me, and then had me do it in her presence - to make certain it was done right.  I was sent home with a couple of bags to use for the less than two-weeks I'd have the catheter in me.  One bag was for walking around - the one that affixes to your leg.  Straps came with each of the bags to hold them in place - there was no need to purchase or make one (they were of the velcro tabbed elastic strap type).  The other bag was larger and for night use, when sleeping.  Each bag had a tube attached to it which was connected to the nozzle-type end of the catheter tubing. 

2. With respect to the catheter, boxer briefs?

My Urologist, and Nurse, strongly recommended boxer shorts because jockey shorts would be too constricting.  What I did at home, though, was wear summer shorts around the house which gave me the freedom of movement.  I found that the tubing, though tethered to the thigh, needed ample room.  I did, though, wear boxer shorts under my ahtletic sweat pants when going out walking, etc.  As has already been noted, jockey-style briefs have worked best for me, using the pads once the catheter came out.

3. What is the name/brand of the male continence pads?

There are several/many brands.  Tetra/Serenity is one, Depends is another, and then there are generic brands sold by pharmacy chains such as CVS, Walgreens, etc.  I've used them all.  I find the extra absorption pads the best for me, but they're almost impossible for me to find in Chicago, or near where I live in Chicago - so I buy the best (best absorption level) I can.  I also purchased some protective briefs, but used them only for a few days - and found them unnecessary (but keep them around as a sort of security blanket).

Miscellaneous comments:

If it hasn't already happened, ask your Urologist/Surgeon or someone on the office staff there for a complete list of supplies you'll need for the post-surgical procedure.  I found it very helpful to purchase these items and have them in the house so that when I returned home from the hospital I didn't have to worry about how I was going to get the stuff; I live alone.

Some of what my Urologist suggested I purchase, and was glad I did is:

  • Saline solution:  to rinse the catheter bags and tubes
  • White vinegar: to clean the catheter bags and tubes
  • Alcohol: to sterilize things
  • Alcohol wipes: used to wipe the catheter connections, tubes and da Vinci procedure incisions
  • Sterile gauze bandages: for the drain and other incisions spots, as necessary
  • Adhesive (or other) tape suitable to affix sterile pads to skin
  • Band-Aids
  • Cotton balls
  • Q-Tips
  • Stool softener (Senekot):  suggested for at least the first three to four weeks
  • Tylenol:  for ache/pain relief, used in place of the stronger pain relief the doctor prescribed but asked me to refrain from taking, except if I had very severe, prolonged pain (which I didn't)
  • Thermometer:  to monitor my temperature, in case of fever
  • Antbiotic ointment: to apply to drain and/or other incision points and to be used on catheter tubing and end of penis until after catheter was removed.
  • Mattress protector:  similar to the type of square pad you see used in hospitals, placed under the rear-end of patients to protect against soiling bedding.  I was concerned I may not have bladder control overnight, even when using pads, so I used the matress protectors just in case (didn't really need it, as it turned ouot - but it served as a security blanket for me).

On the way home from the hospital, I stopped at the pharmacy to fill a prescription for a pain killer (to be used as a last resort, said my M.D.), everything else, including food supplies for two-weeks had been purchased in advance.

Maybe some of this will be helpful to you as you plan for the surgery, and the recovery period.

Your husband is fortunate to have you by his side during this - I went through it alone and there were some logistical issues at times not easy for me to manage.

Best wishes for your husband, and your, speedy recovery.

Mavica

Posted 11/18/2008 6:06 PM (GMT 0)
Just a few random comments - I've talked about these before (June - July timeframe I believe):

The ride home - have a big SOFT pillow or doughnut for your husband to sit on. Some patients (like me) have extreme butt pain and the ride home can be an adventure if you are not prepared.

Bladder spasms: Be sure you talk to your doctor about this. If it occurs, it is usually within 24 hours of catheter removal. One moment you're fine, the next moment you're on the floor in such pain you can't breath or even speak. It has happened to me and a couple other guys on this site. Some doctors give you a drug to prevent this, some doctors don't even tell you about it.

I used boxers during the catheter time, and tighty whities after that. I never liked the leg bag. Too small and too uncomfortable - so I just carried the big bag around the house for a week. I mean, I had nowhere to go, right? I even carried the big bag to the doctor's office for the catheter removal. I wore cargo shorts, carried the big bag in a cloth book bag thing, and nobody noticed much.

I used CVS male pads - they are thick and bulky, but I needed maximum absorbency. After I got it under control I switched to the Tena Serenity male guards mentioned above. They are the most comfortable but they are NOT the most absorbent - so be careful.

Desitin for diaper rash!! In the most unfortunate places. I also tried Boudreaux's Butt Paste, Balmex, and something else, but Desitin did it for me.

You'll be off pain pills almost immediately - although Tylenol will be your friend. There is almost zero pain associated with the actual surgical entry points - but there is a whole lot of healing that has to go on inside, so Tylenol will help there. But on a pain scale this is NOTHING compared to shoulder or knee surgery (I've had both).

Good luck, you'll do fine.
kcragman
Posted 11/18/2008 6:40 PM (GMT 0)
Thank you all for your help. I called the doctor's office. They didn't have a list of supplies they thought we'd need. I guess they deal with the front end of the surgery (Ooops! Was that a pun, an unintentional one?) and I get the impression that it's the families who've been through the surgery who can actually tell you how to deal with the back end.

My husband, who doesn't like doctors or hospitals and who lost his first child to cancer, is understandably scared. But he's keeping it together the best he can.

I will be at Target this weekend buying most of the supplies we'll need for after surgery. You'll be hearing from me once we it's over, if only to convey our experience with prostate cancer. If you don't hear from me before then, have a wonderful Thanksgiving. (We've cancelled ours and will probably just eat pizza—my husband's favorite food.)
Posted 11/20/2008 1:58 PM (GMT 0)
Good luck to you and your husband. My wife kept it all together for us. My Dad died of cancer at age 42 and finding out i had cancer really rocked me. We prayed alot and did our homework. Thank God things are getting better it just takes time and patience. Best wishes to you and your husband.
Posted 11/20/2008 4:20 PM (GMT 0)
Hi SurfingSpouse!

Like many here I received the hospital velcro for the strap. It worked fine. I would recommend loose boxers for the catheter. Pads will work fine in boxer briefs but not well at all in loose boxers. For pads, I used these:

http://www.amazon.com/Depend-Guards-52-Count-Packages-Pack/dp/B000FFAABE/ref=pd_sim_gro_1

I was lucky and only had to use one per day, so the size/thickness may depend on how continent your husband is.

For the ride home, wear loose fitting pants or sweats and have plenty of cushion underneath him. Avoid potholes!

For the friction of the tube moving in and out, I used KY Jelly or some other kind of water based lubricant. Frequent walks are very important when he gets home. A little of the KY prior to the walk will make it way easier. I did a mile the day after surgery and when I was feeling better I increased it. The walks help the healing but also get your insides and bowels moving quicker.

Good luck to you both!

Chris
Posted 11/20/2008 4:54 PM (GMT 0)
SS,
Loose fitting pants, but tight fitting briefs. I found that my boxers were annoying while the catheter was still in. In addition briefs aremuch better supporting pads. All other advice above is good advice. Good luck on Monday!

Tony
Posted 11/20/2008 6:58 PM (GMT 0)
Surfing,

Gosh, I thought if treatment was in mid-stream, any post op TX had to be included under most policies? Humor us and check to see if this is at all true if you find a moment in your busy day.
Glad to know you folks at least got a company price while having to pay out of pocket.

PS: Boxer briefs, absolutely! Can't speak for pads as Paul did not need them. I had purchased Poise in 2 sizes and later donated them.

Good Luck and God Bless.

Swim
Posted 11/20/2008 10:36 PM (GMT 0)
Something I forgot to add to the list of things to get for the post-surgical period:  slip on sandals/shoes so he doesn't have to bend down to put shoes on or tie them.  I brought sweat pants to the hospital for the trip home, and the slip-on's were a God-send until the catheter came out.
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