HealingWell
Search Close Search
☰

New here 4+5=9

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/29/2021 4:22 AM (GMT 0)
Good luck with the surgery! A few things that helped my recovery a little easier: I highly recommend a pair of breakaway/tear-away pants like basketball players wear. about 30 bucks online. Snaps on the sides from ankle to hip makes it so easy to put on/take off around catheter drain tube. And drain tube goes out the side easily while in the recliner. Also bought boxer briefs which go a little farther down the leg and helped keep Cath snug to leg. Got them one size larger than normal to provide extra room for pads once Cath came out. As mentioned, you have to drink a lot of water to keep your bladder flushed. Single serve packets of drink mixes for bottled water were convenient. Following another's advice, I didn't bother with the smaller Cath leg bag. Just carried around the big one I was sent home with and didn't leave the house until Cath was removed. Best wishes for your surgery/recovery.
Posted 4/29/2021 4:49 AM (GMT 0)
So you are covered for recliners. That is good. Make sure you can see the television from the one you plan to use during your recovery. Also make sure you have a side table to put the remote on -- and a beverage. It'll be inconvenient to get up so the more things you can reach from the recliner the better off you will be. You may also want a plastic bucket to put your catheter bag in while you recline. These are, of course, minor details but you won't be moving much furniture for a while after your RP.
Other things that are handy to have around during your recovery are comfortable walking shoes that are easy to put on and take off and some sort of pants that can be opened at the knee. The two things you can do that will help speed your recovery are reclining and walking. The reclining part keeps things from swelling and the walking helps keep you regular and makes your incisions heal better. Once your surgeon tells you to get up and walk you should plan to recline if you aren't walking and walk if you aren't reclining. While you are out walking you will probably be wearing a leg bag strapped to your thigh. If you are wearing pants that unsnap or unzip at the knee you can get at the drain hose on the bag in a men's room without disrobing. I like "convertible hiking pants" from places like REI. They have a zipper to convert them from long pants to shorts and that zipper is in exactly the right place to get at your drain. Other guys like "tearaway (basketball) pants" which have snaps down the legs.
Posted 4/29/2021 4:51 AM (GMT 0)
Another great practical idea , I appreciate all of your great thoughts that you found helpful
Thank you
Posted 4/30/2021 2:24 PM (GMT 0)
I had my RALP on 2/9/21, so I am 11 weeks out. I'll admit the first few days after surgery were a bit rougher than I imagined, mainly very painful to move around. Maybe I should have taken more pain meds than I did. I followed most of the advice given above. In one of the first days after surgery, I fell asleep for a nap with the small cath bag connected, and woke up with it filled to almost bursting. Fortunately, I was able to empty it before the cap blew off. I was afraid the back pressure would cause a UTC or damage the healing urethra, but apparently no damage was done. Afterwards, while at home, I mainly used the large bag, carried around in a pail. I'd use the small bag/zip off pants for going for walks. The main thing I am still dealing with at this point is leakage, now down to 1 pad / 2 ounces or less per day, and decreasing. While at the hospital, they had a plastic urinal bottle available that I didn't use, but I brought it home when I left. It has proven handy for peeing into when standing, doing the stop/start drill, as I train my sphincter muscle. When I had the catheter removed, no one had told me to bring Depends and I was surprised at the lack of control. The nurse was new and it took her some rummaging around to find a pair, but fortunately she did. Come prepared. Best of luck, and take care of yourself.
Posted 4/30/2021 2:32 PM (GMT 0)
Thank you for sharing your personal stories. I am reading and am more prepared to face the days after the surgery and healing.
Posted 5/4/2021 10:27 PM (GMT 0)
Another 4-5 = 9 here. PSA reached 14.8. It is plenty alarming to receive HIGH RISK information. I grabbed a community service ticket out of VAMC and I'm now with UT-Southwestern Dallas, I elected to get HDR Brachytherapy and do the Triple Play (HDR, EBRT, and ADT). I had my Brachy on April 21, 2020, completed EBRT on May 29 and it has been 3-month PSA monitoring every since. Been on ADT (Lupron shot) since 2-14-20, and getting final one in September. So far so good but the ADT is also keeping it down. Since your getting surgical removal you avoid all that. I wish you all the best........a change of diet is very important as well.
Posted 5/4/2021 11:00 PM (GMT 0)
Thank you, I agree and have started cutting out sugary and fatty foods and incorporating healthier choices.
More water and have added prune juice as a before and as well as after
Posted 5/5/2021 12:19 AM (GMT 0)
Steve, welcome to Healing well. I am a Gleason 8 guy, I had robotic surgery on 2/2009 at the age of 67, fortunately my PSA remained undetectable until 2017 when for the first time it was .01. since 2017 my PSA kept creeping up and it is now .12. I plan on seeing an oncologist to plan the next step. With your high Gleason it will be prudent to follow the surgery with Adjuvant radiation to make sure that co cancer cell are left behind..
Posted 5/5/2021 12:30 AM (GMT 0)
So much wonderful and encouraging information shared.
I truly thank you all
Posted 5/5/2021 4:59 AM (GMT 0)
Steve:

One suggestion I never see mentioned. After surgery, the most difficult/painful movement for me was going from sitting to standing. We ended up getting a cane and that was a great help in doing that move.

Mel
Posted 5/5/2021 11:29 AM (GMT 0)
Great thought , very practical
Thank you
Posted 5/5/2021 12:21 PM (GMT 0)

Ed C. (Old67) said...
Steve, welcome to Healing well. I am a Gleason 8 guy, I had robotic surgery on 2/2009 at the age of 67, fortunately my PSA remained undetectable until 2017 when for the first time it was .01. since 2017 my PSA kept creeping up and it is now .12. I plan on seeing an oncologist to plan the next step. With your high Gleason it will be prudent to follow the surgery with Adjuvant radiation to make sure that co cancer cell are left behind..

Following RP with adjuvant RT is not standard of care for high-grade disease unless (1) there is persistent PSA post-op or (2) there are one or more adverse findings in the path report. I haven't seen a single treatment algorithm from a major institution or a published paper that recommends prophylactic adjuvant therapy, whether RT or ADT, when there is a pT2 outcome with negative margins. In other words, any decision about the need for further treatment waits until after surgery.

Djin
Posted 5/5/2021 12:31 PM (GMT 0)
I agree, and thank you
Cross that bridge when I come to it
Posted 5/31/2021 10:12 PM (GMT 0)
Good Evening
I am 8 days into my surgery.
All went as expected. Tuesday morning is catheter removal and pathology report.
I have enjoyed sleeping through the last 7 nights.
Thank you for all the advice and help since finding out my diagnosis.

Steve
Posted 5/31/2021 10:30 PM (GMT 0)
You're in a good place, Steve -- congrats on this big step and best wishes for a great path report!

At your visit you can ask your doc when he'd like you to have your first post-op PSA test. It usually ranges from 6 to12 weeks, but docs and G9-10 patients are usually up for an early check, to make sure it's <0.1 as confirmation that there is no persistent PSA. After that you can ask about following your PSA with an ultrasensitive test, which provides more precision for values below 0.1 and also gives you more of a heads-up for us high-Gleason guys, should your PSA begin to climb.

I was set to have my first PSA draw at my uro's practice 5 weeks after surgery, but I stopped by at 5 weeks to pick up paperwork for my job at the front desk. As I was getting in the car to leave, the nurse phoned asking if I'd like to do a PSA since I was here. When I said it had been only 5 weeks, she said my uro thought it should be fine. I had the draw and, fortunately, my PSA came back <0.1. Most (but not all) men have all their leftover PSA metabolized by 4 weeks.

Djin
Posted 5/31/2021 10:32 PM (GMT 0)
Welcome to the other side!
Posted 6/1/2021 2:29 AM (GMT 0)
Steve - Great to hear you are doing ok and this week will free you from the catheter. It is wonderful walking to the car with no bag in your pants.

One good thing is that you will probably not get a worse diagnosis than you already know about. Sure, there are a couple of things that might be discovered in the post-op pathology but your G9 biopsy has prepared you for most things.

I am a fan of the 12 week PSA as I see little need to know anything until it is time. If you are not clear at 12 weeks, you will not be a month later so you will know where you stand. The early tests are fine but they will be repeated if not clear so it does not change the end game. Just depends on your anxiety and need to know attitude.
Posted 6/1/2021 2:41 AM (GMT 0)
I am so glad to hear from you all. I hope I will be able to help someone in the future as much as you have helped me. A friend of the family as well as a neighbor just a few houses from me have shared their recent diagnosis shortly before my surgery.

Steve
Posted 6/1/2021 10:28 PM (GMT 0)
I'm a fellow 4+5=9 here in Dallas with a high.PSA 36 diagnosed. I did not go the surgery route as I went with The Triple Play (HDR Brachy/EBRT/ADT). The radiation part was from April 21 ending May 29 and I am still on ADT with my final Lupron jab coming in September. From my high PSA back in March 2020......the last PSA on May 20 was 0.07. I changed my eating habits to organic food and have cut out, red meats, adult beverage and dairy. Just wanted to give you some inspiration that a G9 with as high as a 36 PSA given the right care (UT Southwestern) can get a grip on a tough scenario in a relatively short period of time. Keep us posted.
Posted 6/22/2021 2:54 AM (GMT 0)

Hello, SteveSwitz ~~~

Just checking in with you, to see how you're faring ...

Summertime is here, and your surgery is in the rear view mirror by now.

Hope you are rebuilding your strength and vigor, once again.

You put together a "plan of action" and followed through.

Treatments can be a "rough road to travel" --- but I hope you are doing well.

When time allows, let us know how you're doing --- and I hope your journey on THE ROAD TO RECOVERY is going well!

With my best to you,
CYCLONE ••• # Iowa State University
Posted 6/22/2021 3:13 AM (GMT 0)
Thank you for your thoughtfulness.
Yes, 4 weeks post op now. I have built up to walking an hour or more 4 or 5 days a week.
I’m able to mow both my moms and our yards. I do have a kind neighbor who uses his weed eater for us. I am doing small projects as well.
One of the four lymph nodes showed metastasizing. I go in for PSA July 6.
I am staying positive and busy.

Thank you again, Steve
Posted 6/22/2021 8:04 AM (GMT 0)
Hi Steve. Thank you for the update -- they are most welcome. The majority of G9 guys do need some form of adjuvant therapy after RP to complete their primary treatment. It's great that you continue with a positive attitude.

Djin
Posted 6/22/2021 10:41 AM (GMT 0)
Steve, it sounds like you're well on your way to post surgery recovery. How's your continence and ED doing? The PSA will tell you a lot--it should be zero or nearly so at 6 weeks. With the hot lymph node, they may schedule you for some adjuvant radiation to your pelvis to knock it out fairly quickly, even if your PSA is gone.

Keep on going. Naps are your friend. Enjoy life!
Posted 6/22/2021 11:58 AM (GMT 0)
Thank you, My continence is pretty much near 100% with only brief one second off guard spurts which i am able to stop immediately. Thankful for depends if I am in public.
ED is null at this time. But feel confident over time will have improvement.
A neighbor had his biopsy and goes for his consultation today. I am thankful to be able to share with him what I went through and offer encouragement.
The more people I talk about this the more I find others who have been through or are starting to go through their journey.
Thank you, Steve
Posted 6/22/2021 3:32 PM (GMT 0)

SteveSwitz said...
(snip)
A neighbor had his biopsy and goes for his consultation today. I am thankful to be able to share with him what I went through and offer encouragement.
The more people I talk about this the more I find others who have been through or are starting to go through their journey.
Thank you, Steve

Since I started sharing my PSA/RALP experience with friends and family in March, three friends/family have had their PSA levels checked and are scheduled for biopsies, and others are catching up on their checkups. I guess it might be my age (62) and my circle being of similar ages, but it is starting to feel like an epidemic to me. A year ago, I was totally ignorant of prostate problems and now I feel I am surrounded by them.
✚ New Topic ✚ Reply
123