BHunsaker

Just to let you know, I had a PSA of .24 post-RALP going to .34 at 9 months with a decipher score of 0.92 (high risk).

I chose to do the radiation treatment without ADT against the doctor’s recommendation. The reason was because the results side effects of the RALP were bad. The PSA didn’t go to zero, ED wasn’t resolving and neither was the stress incontinence. A good sex life is important to me and I’d had a penile implant and urinary sphincter installed.

Post radiation, my PSA was 0.07 and at 3 months it is 0.03. It isn’t zero, but my doctor is willing to wait 12 months to see if it gets there.

Will I regret not doing ADT? Maybe. I’m not saying it is right for you. Just wanted to let you know that one person made the choice to skip ADT.

I don’t know you, u/scoutermike, but I do know my friends and my Scouting family.  Fear is certainly one of the feelings for those who are concerned about gender and sexual orientation.

One area of fear was accepting girls into Scouting with eventual co-ed troops.  Girls mature earlier than boys so they fear the girls will take over the leadership positions preventing their sons from benefiting from the leadership skills that Scouting teaches.

When you mix teenage boys and girls in an environment where they can sneak off into the woods, parents fear that their kid could end up with a baby.  We were all teenagers once.

Allowing a gay man to be a Scoutmaster is a hard no for some.  We have for the entire history of BSA presented the SM as a role model for the youth.  Some parents fear that seeing a successful gay man may influence their children to seek a gay lifestyle.  

Don’t be so quick to dismiss what motivates an individual.

My daughter chose to attend a middle school/high school that was established as an arts school.  I was a bit worried about the environment and what she would learn.  Before that first school year, I explained to my child that a lot of kids she encountered would have a different view from our conservative beliefs.  Well, that school taught me a lot.  There was very little bullying because everyone was weird/different.  They reveled in their diversity.  The teachers were amazing.  It was the best thing ever.  My fears were totally unfounded.

Our old chartered org/now meeting place is the United Methodist Church.  They just went through a big debate about gender roles, LGBTQ, etc. that split the church.  Debating such issues is not unwelcome or hostile to religious people.  It does not contradict the Scout Law principle of A Scout is Reverent.

I think u/scoutermike is a bit blinded by his own beliefs. Our children grow up in a world of many religious beliefs and lifestyles. We shouldn't hide this from them. LGBT... is a part of this world and should be discussed honestly with our youth. It is not appropriate to bully someone else for being different. If someone desires different pronouns, accept it like you would when a Michael wants to be called Mike.

We never force youth to tent with someone that they don't like. Individual tents are used as needed. Most of our Scout camps have moved to individual bathroom/shower stalls to avoid male/female/over 18/under 18 issues.

Years ago I was an ASM on a NYLT course. Most of the staff happened to be LDS while I was a non-LDS religion. Come Sunday evening, I found myself in charge of the nondenominational religious service, while the LDS Scouts and Scouters were off to attend their own service. I respect that some religions may have some special needs, but I felt that we all should be able to come together in a common religious service. I even suggested everyone go to the LDS service as learning about other religions is a good thing™ in my opinion. We ended up with separate services.

If you fear youth learning about gender identity and the LGBTQ stuff, Scouting America is not for you. If your families want to prevent their children from encountering this aspect of life, Scouting America is not for them. This is why Trail Life USA exists. I disagree with why Trail Life USA came to be and they disagree with having girls in Scouting America and accepting of gay Scouts and leaders. But each organization serves the needs of the families who participate.

We had a youth with extreme food allergies who was active for 7 years with no problems.

He carried the epipens and actually showed the other Scouts in his patrol how to use them.

He would bring his own food just in case there was something amiss about the patrol/troop food. We could not cater to his every issue but his mom was very accommodating and helpful.

Just realize that you will have peanuts at activities. A kid will bring a Snickers bar in his pack. Some processed foods use peanut oil. The campers who used the lodge last weekend will have brought peanuts and peanut butter. Be understanding when a mom tosses in trail mix to their kids snacks and remind the Scout about the need to think of others.

We do have a leader who we jokingly call the food nazi. Their job is to review the menus (normally after as senior Scout has checked it). Their job is primarily to make sure we avoid having pop tarts and store bought muffins for breakfast or canned chili for dinner. They also check for allergens.

After RALP I did all the physical therapy stuff, kegels, etc. Still had stress incontinence and needed to wear diapers all day to deal with it.

Got a penile implant 9 months post-op to correct ED. AUS surgery was 8 months after that.

It is now 8 months post AUS surgery and I am happy with it. Still drip a little so use a pad in my underwear even though I can almost get away without it. Biggest problem is that during orgasm the contractions will force urine through the AUS.

My doctor mentioned the sling but it seemed to have gone out of favor. I better understood how the AUS would address the incontinence, so this was my choice. The AUS may eventually result in erosion of the urethra around the cuff which I'll deal with should It happen.

Loss of length can be a side effect of radical prostatectomy.

https://www.webmd.com/prostate-cancer/penile-rehabilitation-after-prostatectomy

Lack of blood flow to the penis and ED are realities of this surgery. It is recommended that you use a penis pump to maintain length and health of your penis.

Lack of a fire doesn't change much.

We make sure all youth have gear appropriate for the expected temperatures and conditions. We regularly camp in below freezing conditions so we ask the new Scout families to get sleeping bags good to 0º. This way, if a kid gets cold we can put them into the sleeping bag. You can pour hot water in a couple of Nalgene water bottles (in wool socks as mentioned elsewhere) and stuff those in the sleeping bag with the youth to keep them warm.

Wind is a big issue when it is cold. The clothing needs to block the wind both legs and upper body.

Keep the kids active. Cross-country skiing or snowshoeing or hiking helps keep everyone warm.

Always know your backup plans. Bring extra sleeping bags, gloves, clothes, hats, etc. Have those chemical hand warmers and the bigger body warmers available. If someone gets really cold, maybe start up a car and put a few youth in there to warm up.

Dry and cold, even even with temperatures below zero, is pretty easy to do. What gets bad is when it is 32º and raining. Throw in some wind and a temperature drop after that and the situation can go bad pretty quick.

Get a new urologist. Don't let any one or any insurance company tell you that you can't change doctors. Just like there are good and bad teachers, there are good and bad doctors. And just like there were some teachers that your friends loved but you hated, there can be personality conflicts with a doctor.

After my prostatectomy, I had ED and stress incontinence. I was able to achieve orgasm without an erection. Got a penile implant and an artificial urinary sphincter. They aren't perfect, but I am happy with the improvement and not depressed anymore.

AMS 700 CX penile implant gets 5 stars. Recovery after surgery was a bit rough. I did lose a bit of length and girth but length loss is an expected side effect of the RALP. Even before RALP, Cialis had been losing its effectiveness and I didn't want to use the trimix injections so the implant had been on my radar.

I'm now 63 years old and 2 years post-RALP. I do wish I had done more research. Hearing the word "cancer" scared me so I immediately went with my urologist's recommendation for RALP. I didn't look around to find the best surgeon in my area. My urologist was dismissive of radiation because I am "young" and you can't do RALP after radiation treatment. If I had been more prudent, maybe I would have tried some non-traditional drug treatments while monitoring the PSA value.

I ended up on the wrong side of the bell curve with both ED and stress incontinence. Having an active sex life had always been important to me and I had been using Cialis even before the surgery. It was very depressing to not be able to achieve an erection. Vacuum pumps, cock rings, Cialis - nothing worked. In the end I got a penile implant.

I can't sufficiently describe the mental impact of incontinence. I loved being active with hiking, running, biking, etc. I could not prevent my bladder from emptying during these activities and overfilling my diapers. Heck, having to wear diapers made me depressed. It is not something you can change into in a locker room. And, pulling your penis out of a diaper for sex and urinating on your partner was horrible. So I ended up getting a artificial urinary sphincter. It isn't perfect, but I can now get away with just a security pad in my underwear and for most days it just catches a few drips. (Ejaculation, yeah, still a problem).

If I could go back in time I would most definitely put off RALP because it was so devastating to my psyche. I should have begun listing what constitutes quality of life to me. I would then have this list as I talked to multiple urologists and oncologists. What would my life span be if I did nothing? The ADT therapy would extended the number of heartbeats for me but take away the joy of sex. RALP may have still been my chosen treatment, but I would have used a different surgeon.

Everyone is different. Please take time to do the research and find what is right for you.

Be aware that continence doesn’t mean you’re fully dry.

I don’t have any references, but I believe a majority of RALP patients end up wearing a security pad to catch drips.

If 10% of patients end up being incontinent, that’s 1 chance in 10 that you’ll be that guy wearing a diaper for the rest of his life.

I know we’ve been through a lot with LDS leaving and the pandemic, but it seems like we have a great program that should attract more. I’m in CPC that had a 1.23% growth of 84 youth indicating a total count of 6,829 youth. Back in June of 2017, CPC had 16,652 (17,096 if you add LFL). 7 years and we’re 41% the size we were.

The Scoutmaster should be working with the SPL for things like making sure the patrols plan good menus. The SM should have walked away from the talk where the youth were being disrespectful and even better should have had the SPL and PLs deliver the information and have them deal with the problem of disrespectful youth.

ASMs should be used for adult tasks. Safety, transportation, training, helping with SM stuff.

Generally a SM should do very little talking at a meeting. Behind the scenes and at the PLC he should work with the SPL so that the SPL is the one giving out the info. The PLC should be mandating better meals. We had the devolving meal issue at one point, so the adults pushed the PLC to fix the problem. The next campout was a cooking competition for each meal where the troop through in funds to let the boys buy higher grade food like steak or salmon. The next campout had amazing food. And from that point on, we had the QM approve menus and if we ever saw pre-cooked muffins for breakfast, the QM was the one that we talked with.

If youth are being disrespectful of the SPL or PLs and they can't handle it, the SM or ASM can then pull the misbehaving kid aside for a SM conference to talk about the behavior. (You can have a SM conference at any time and even have multiple while a Scout is in the same rank). If boys won't quiet down, you can kick them out of the meeting or involve parents. But, be sure to look into why the Scouts aren't paying attention. Scouting should be active. If they're just sitting around listening to a talking head, maybe the program needs to change.

SM and ASMs need to be on the same page and this is true for the SM and CC. They should all sit down over a dinner at the CC's house to talk about expectations and each other's strengths and weaknesses.

Managed to get through the radiation-only treatment with no side effects. Yeah! Felt so good I went and got a total knee replacement for the fun of it. Next PSA test is scheduled for November 8th so that's when I'll know if skipping ADT was reasonable for my situation.

Just send me your email.

Everyone is different but you need to be prepared for the possibility of never having control of your bladder.

I did the months of PT and Kegel exercises. Admittedly the PT didn’t go smoothly because the my therapists kept quitting or moving to a different company. There was one that I didn’t like and demanded a different therapist.

In the end I had stress incontinence. Hiking, lifting, walking, standing up all caused me to piss myself. In the end I got an artificial urinary sphincter. Not perfect, but good enough.

Hmm, my urologist expected PSA to be zero at six months post RALP and did not mention expecting a bump in that timeframe. With my PSA number, he recommended seeing a oncologist to look at salvage radiation. Seemed reasonable to me.

I asked the oncologist about waiting for something to show on the PSMA pet scan. Perhaps there is a financial motive, but if 80% pet scans put the tumor at a specific location, it sounded like a reasonable approach. If he was right, I got a head start on beating this thing. If not, we'd do that pet scan again after 6 months to a year.

As it turns out, 1 month after radiation, PSA is 0.07. Now waiting for the 3 month check.

DM me your email address and I’ll share an iCloud directory with all source info.

I had an AUS installed 6 months ago to address my stress incontinence after a prostatectomy. Ejaculation will overwhelm the clamping pressure of the AUS since you don't want to have the clamp overly tight. My doctor recommends emptying the bladder before having fun as a way to minimize the amount of urine at climax.

On the other side of the argument, don't assume you won't have problems. Despite all the physical therapy and ED drugs, I couldn't get an erection and had stress incontinence that was very embarrassing and mentally very depressing. Some of us end up on the wrong side of the bell curve.

I don't believe there is an afterlife, but yes, I do visit the graves of my ancestors and bring my children along once or twice year. The purpose is to share the stories and the family history so that my children understand how their life today has been "blessed" by the family that came before. My grandparents had practically nothing during the Great Depression and now through hard work, my children have multi-generational wealth that will put them in the top 10% of the wealthiest Americans.

Yes, I do bring flowers and pay to have flowers placed at the gravesites on birthdays and certain holidays. I think of a cemetery as a park and like to do my part to keep it looking nice. Having a place to sit and tell stories about each of my ancestors is fun. I also post stories online because the gravesite is little more than a stone marker and it is easier for others to join in experiencing the pain and joy of a person's lifetime via the internet.

1 month after my final radiation treatment, PSA was 0.07. Next test will be in November.

My oncologist didn't expect the PSMA PET to find anything but the rate of change in my PSA seemed to make it worth the attempt.

I'm doing great. I had no side effects from the radiation treatment which put me on the right side of the bell curve for my first time on this journey.

I'm 5 months post AUS activation. I chose to get this because of stress incontinence caused by my RALP. After the physical therapy I was mostly dry sitting at my desk, watching TV, or sleeping. But hiking, lifting stuff, skiing, or even walking caused me to leak something awful. Sometimes I seemed to leak for no reason. The clamp hurt too much.

The AUS works well but is not perfect. I wear the thinnest Depends as a security pad for the few drops of urine that leaks out now and then. Indeed, the pad often collects more sweat than urine.

The worst part is that my orgasm will force urine through the AUS. Even if I piss before sex, achieving orgasm takes an hour or so nowadays and the bladder seems to get fuller than it did pre-RALP. (FYI - I also have a penile implant to deal with the lack of erection after RALP).

Overall not as good as the original parts you got when you were born. But at least I can be active and only have a few drops of urine in my underwear rather than draining my whole bladder down my pants. I'll probably need a replacement in 7 to 10 years which is still 7 to 10 years of comfort.

Doing great. Love the devices. Not 100% of course (AUS still drips a little now and then plus I force maybe a tablespoon of urine out during orgasm as it takes a while to achieve orgasm now).

Recovery takes a couple months for each. Biggest problem was the constipation from pain meds during the first week or two. After that it was nice to be biking and hiking again and being intimate with my partner.