Travel during RP recovery?

[VWVoodoo]

I'm 47, and generally healthy except for this 3+4/4+3 (depending on the path report) prostate cancer. Because of my age, I chose a robotic RP over the radiation options (believe me I wanted to go there until it was made clear that the long term effects of the radiation were a bigger risk than the known effects of surgery in highly capable hands). I'm scheduled for Nov 2, and the urologist says no heavy lifting and no work for 6 weeks. I would really like to make the 12hr drive to see my aging parents for Thanksgiving at the end of that month. In your experience, how likely will I feel ready to make a long road trip 3-1/2 weeks out of surgery?

[Tall_Allen]

You were fed the typical myths about radiation. I'm not saying that surgery is a bad choice, only that urologists usually don't know anything about radiation oncology.

(1) age- Younger age means you have more prime years to suffer from the incontinence (20% have permanent incontinence) and impotence (only 35% of previously potent men who have nerve-sparing surgery remain potent) and erections are seldom as good. It is true that younger men do better - but that is true for both radiation and surgery.

(2) lasting effects of RT - Late term Grade 2 (bothersome) urinary toxicity is 9.4%; Grade 3 (serious) is 2.1% for SBRT. Rates are lower in younger men. Late term toxicity is usually transient.

prostatecancer.news/2018/10...

(3) Hot dogs- surgeons all think they are better than average.

(4) Here are questions to ask yourself:

prostatecancer.news/2017/12...

[VWVoodoo in reply to Tall_Allen]

I had multiple radiation oncologists who were very experienced with proton beam and brachytherapy tell me not to have radiation treatment. That is what swayed me to surgery. The second rad-onc is my age with thousands of proton beam treatments under his belt, and he told me he would have surgery in my shoes. I am scheduled with the surgeon he would personally use. I am confident in this decision. Believe me, I even flew to MD Anderson to consult there with hopes that radiation would be the answer.

[London441 in reply to VWVoodoo]

Multiple radiation oncologists told you not to have radiation? That makes no sense but ok.

I had surgery at a major center of excellence with a very good and experienced surgeon. It left me 100% incontinent, requiring additional surgery and ongoing complications. You probably won’t experience that , but I learned the risk of incontinence is definitely much higher than the <5% that I was told and read in 2019 before my surgery.

ED is another story. At the very least the length and girth of your penis will be less. Erections will never be the same, and moderate to severe ED is likely.

Statistically , RP fails 30% of the time, necessitating further treatment, including radiation.

Radiation has seen dramatic improvements; long term toxicity is characteristic of radiation in the past, not today. Again, that the negative hype came from ‘multiple radiation oncologists’ defies logic. Why would they be in the business of something they advise against? I don’t think we’re getting the whole picture here.

On the bright side, your 12 hour drive should be fine, if your health is otherwise good.

[Gardenpests]

There are personal variables that could change my conclusion. And, my memory of RALP 3 years ago. But, I can't think of anything in the procedure that would inherently restrict you from doing it. You'll be walking and somewhat active. Sitting is fine. Even without RALP that's a pretty grueling drive.😉 I don't regret my surgery at all. Minor, temporary, post procedure sexual and urinary issues. Pre-op, nothing, including the MRI, indicated the cancer had escaped the prostate. Having surgery allowed the surgeon to cut wider and take 20 lymph nodes, rather than the planned 10. Having tissue in hand allowed the pathologist to conclude the 3+4 was within the surgical margin and the nodes negative.

[Justfor_]

My RALP must have been very mild if I have to asses it by the pain killers that I only took for just the first day after surgery. During the following days the nurse would bring them but I didn't feel any pain to justify taking them. Yet, it took me about two months to find me in the driving seat, my wife was covering for me during that time. If you have someone else to drive you and your continence has reached a point that doesn't require frequent rest room stops, I think you can do it. Single handed will probably end-up to a drill.

[FMOH_N]

As soon as the catheter been removed about 8-10 days post surgery I felt much much better. I didn´t had problem sitting in the car and driving for some hours, 12 hours is long time, but maybe you can rest after some hours driving and you can always stop and overnight in a hotel and don`t rush to do all driving in one day. Also remember that you will have some incontinence, some minor swelling and pain, but these are manageable.

Wishing you best of health and luck.

[Jp2sea in reply to FMOH_N]

I agree... i think if after a week or so after catheter, probably ok. Maybe just uncomfortable

[MNFarmBoy]

Conclude what you will from my most relevant experience: 24 days after I had RP surgery, the physician's assistant advised that it would be okay for me to run, increasing distance by 1 mile increments until seeing blood in my urine, then back off. Two days later I ran 2 miles, then 3 miles 2 days later & then ~3 times/week without encountering the blood-in-pee limitation.

However, the PA was adamant about not exceeding the lifting restriction right up to 6 weeks following surgery, so I suppose that falling, or lunging to avoid falling, or anything resulting in strain similar to lifting, might have been harmful.

Regarding RP vs. RT, I do still suffer from side-effects (ED), as Tall_Allen has warned about, so I do second-guess that decision, but in the end I'm thankful that PSA has remained below the limit of detection for nearly 4 years.

Best wishes for the best possible outcome!

[dlste353 in reply to MNFarmBoy]

I know personally several men who developed ED from radiation treatment. Those in favor of radiation over RP never mention that. I hope you can quit second guessing your choice. It sounds like it was the right choice for you.

[EdinBmore]

I echo Tall_Allen's advice/comments. ROs told you NOT to have radiation?? More than a bit surprised by that. Did you talk with a medical oncologist? May be worth a visit. . Anyhoo, please note the comments about surgery on sexual functioning. Whichever treatment you decide upon, check out use of penis pump and ED meds. If sex is an important part of your life, you'll want to do everything you can to preserve it. My experience was that the docs I had really didn't talk much about it.

Good luck and best to you, man.

EdinBaltimore

[Bethpage]

My husband had a simple prostatectomy at age 71 (11 years of negative biopsies, but the tumor was there in a huge prostate). He went back to teaching 6th graders 5 days post surgery. Three years later, age 74, he had a salvage surgery and again went back to teaching on the 5th day post surgery. By 3 weeks after both surgeries, he was back to walking 6 miles every evening. His second surgery was much easier on him than the first because he knew what to expect of his body. He made a flying trip from FL to TX to work as a sports photographer (active job) the third week after both surgeries. He doesn't feel pain like a "normal" person, though, and YMMV. I hope you can make the trip at Thanksgiving. That would give your morale a big boost!

[rocket09]

I had the surgery and am good with it so far. 5 years out and ok. I had a huge prostate and trouble with my waterworks so the surgery has been good in that regard as well. I was walking miles after 2 weeks or so and I don't think you will have a problem driving. We are all different. I also have reasonable sex with the help of trimix and a rubber band. My wife and I are happy! Live your life with gusto!

[caysary]

I never had a RO tell me to go with surgery in fact the opposite. Mack Roach at UCSF a top RO told me to stay away from surgery but I suppose there is a first time for everything. But think about this; there has been tremendous scientific advances in radiation delivery over the years and the flip side is that they are still using the Davinci Robotic hands for surgery.

[Steve507]

At 60 years old I was traveling by car short distances one week after surgeryand at 3 weeks two hour trips on good roads to see friends It was just fine. At your young age, all should be fine unless you have other issues to consider. Consult your medical professionals.

[Murk]

IMO you will do pretty good but more rest room stops will be required then what is usual for you. Incontinence could be an issue so have some pads ready to play it safe.

[aceace12]

at your age i would listen to Tall Allen......are you a candidate for AS ?...... if not i would do anything but surgery .... you can do it last if need to

[VWVoodoo in reply to aceace12]

At my age I have seen 4 urologists and 3 Rad-Oncs and self-educated for many dozens of hours. AS is not an option - I have family history (father) and PSA that is rising at least 1.0/yr (6.8 now). First pathology on my biopsy showed a 4+3 (not valid for AS), second showed at 3+4 (valid for AS, but not recommended with my family history). I've had MRI/PET/CT/Ultrasound images read by multiple respected experts.

MD Anderson Rad-Onc said I would be a good candidate for Proton beam, but my Rad-Onc here in Denver (at TUCC), who previously worked at MD Anderson alongside the other doc, and who has a much more multi-disciplinary approach to treatment, and who sees the actual damage modern radiation can still cause, recommended against radiation as he acknowledges the failings of modern/progressive radiation treatment. With 40+ years ahead of me (hopefully), I would rather put my faith in the hands of a talented respected surgeon for (hopefully) a single treatment.

I'm not oblivious to the possibility of ED/urinary issues, or that I may have to come back for scavenge radiation.

I'm here to ask about people's experience with their recovery from surgery, not to defend a highly complex, deeply personal decision based on a huge amount of data, testing, professional consultations, and heartfelt talks with my partner. I don't doubt that radiation is an excellent choice for many or even most prostate cancer patients. I wanted to be one of those. The magic pill of radiation is very tempting and the idea of one month of relatively easy treatments to cure this thing that I don't even feel is very desirable. The issue here is my age. If I was 20 or even 10 years older, I would be far more likely to lean on radiation as my only reasonable option.

[aceace12 in reply to VWVoodoo]

ok great sounds like you got a plan ..... good luck and thanks for posting and i will be watching your progress ... i have been on AS since 2018

[MauiJef in reply to VWVoodoo]

Voodoo....Although I'm a little older than you I'm in the same boat as far as deciding between surgery or rad....I'm too concerned about long term toxicity issues popping up. I'll be looking forward to hearing how your surgery went. It's unfortunate that so many people on here preach about how RAD is the only way and any other option is wrong. I know there are "BIG" voices on here who have great advice to give, but they're truly one sided in what they believe is the only way to go. Good luck on your journey and hoping you have a great outcome. Please keep us updated

[dlste353 in reply to VWVoodoo]

You have a solid plan and back it up with great reasoning. I think we should always be supportive when men have made their decision, and not try to convince them to do something else.

I had prostatectomy and could have easily traveled for 12 hours four weeks later. Not sure I could have driven that entire time though. If you have someone to help you drive you should be fine.

[Tony666]

Honestly, you won’t know until the last minute if you’re up for the drive. So many people have different post surgery experiences. It is major surgery. You may want to say “maybe” for now and see how you do. If you do drive, take lots of breaks. However, if you are still incontenant, don’t do it. It won’t be fun for anyone.

[dlste353 in reply to Tony666]

Great advice.

[allie2020]

I think I recovered very well from my surgery but I was not continent at 3.5 weeks, more like 7-8 weeks. Twelve hours is a long trip and then you'd probably be driving back a few days later. If you have someone with you to share the driving, that would help a lot. I'm older than you but there's no way I would have driven twelve hours just 3.5 weeks after surgery. IMO, waiting until Christmas would be more feasible. I guess you'll just have to see how you feel when the time comes.

[Lightjunkie]

Hey VWV, just wanted to wish you good luck! I'm 6+ weeks out post RALP and happy. Not sure I'd want to drive for 12 hours as there's been a lot of re-education with regard to controlling the ureter, and knowing when I'm wanting to pee and when not and lots of sensations in the pelvic/abdominal area. At 4 weeks it really started to come together and I now have very little concern moving about. You're only going to know 3 weeks post surgery if you feel like doing it. I wouldn't want to put that kind of pressure on myself, yet we're all going to give you a different response! You'll know what you can do. The resting, walking and gentle exercise post surgery has been really beneficial and doing kegels pre and post surgery (when the catheter comes out). And check with your nurse, doc and PA to get their thoughts. Best to you!

youtube.com/watch?v=c0aDJrS...(Not working as expected?)

Michelle Kenway kegel exercise videos have been really helpful!