My RALP Experience - The First 10 days

Thanks for posting all of that, and I love the detail of it all.

One statement I really can get onboard with is how we all have different experiences, and not just with recovery, but also in the way we’re doctored, how that can be so different.

Glad to hear you’re progressing so well - keep posting updates, please.

@mark10517ny Superb documentation. Thank you so much for the time and effort required to share this information.

You wrote "Reading others’ experiences helped me a lot going into this". I hope you continue writing and sharing your strategies toward full recovery.

Appreciate this so much. Cheers ❤️👍

Wishing you very fast and complete recovery : ))) and may the cancer be gone forever !!! 🍀😊

My husband had RP last August and he had very fast recovery even though he was almost 70 (turned 70 in October). Since there are many prospective RP candidates reading this I will include his diary here too if anybody wants to check . Just skip long intro and go to actual day by day blog :)))
https://connect.mayoclinic.org/discussion/surf-is-up/

It is always nice to share one’s experience. Hope for your continued improvement. On another note though, lymph node dissection is done with single port. I had my left set of obturator nodes removed.

@surftohealth88 thanks for your kind words and for resharing your blog. I read it before my journey and it was so helpful. I couldn’t find much else like it out there. Your blog was what inspired me to take these notes and then post them! Thanks for the inspiration.

@wheel1 thanks for pointing that out. I should have said that’s what the surgeon told me. Not sure of any of the details since I’m not a doctor but appreciate the clarification. I’m going to modify the entry to clarify for anyone who read this in the future.

@mark10517ny thank you so much for sharing your experience. I am on the front end of this whole PCa thing, and currently deciding between removing the prostate or radiation. I am not a fan of medical procedures at all so (meaning I don't like medical stuff or medical discomfort) so reading your detailed journey was a good educational experience for me if I go the surgery route. Please let me ask you this; if faced with a choice to do the prostate removal surgery again, would you do it AND what advice would you give someone who is facing the decision to have prostate removal surgery? Thank you very much!

@thig350 thanks for writing and I’m so sorry you are on this journey. This decision is yours to make and whatever you decide for yourself, you should feel absolutely comfortable with. First, get the best doctors you can and learn all you can. Your choice can be affected by many things, including your age, your health, your test results etc. In my case, I was able to get into the Cleveland Clinic and trusted their team implicitly. I spoke with the surgeon a number of times and had a consultation with the radiologist. It’s true what they say: a surgeon is going to recommend operating, and a radiologist is going to recommend radiology. The CC has a tumor board where multiple doctors of all disciplines reviews all of your details. In my case, the tumor board, the surgeon and the radiologist were all clear: either option was likely to cure my cancer, so it was up to me. Both choices were good choices.

I chose RALP because of my relative young age (54), and because I was fearful of the long term side effects of radiation. The radiologist said he thought current technology avoided those issues for the most part. I’m not clear whether that’s right or not. I also liked the idea of having it out of my body. Also, you can have radiation after surgery, but it’s challenging to have surgery after radiation. I liked keeping the options open rather than putting my eggs in one basket. Lastly, I had an incredibly skilled and experienced surgeon tell me he could take care of this and gave me a good chance at sparing my nerves (which he did). My primary goals were longevity of life and then quality of life. So for me, RALP was an easy decision based on all of these factors.

If my reasoning had instead led me to radiation, then I would have been comfortable with that choice and that result. No choice is perfect and all come with compromise. So my advice to you is to find the best possible doctors (actually shop around and find them - don’t just stay with yours for convenience if you think there is a better choice option.). Learn as much as you can so your choice is informed. And if, like me, they tell you that both options are viable and it’s up to you - make your decision and feel good about it. You made a hard choice but are addressing it head on, in a way that feels right for you. That’s all that matters and all you can do.

Good luck to you on your journey. There is a lot of resource on this board. Please continue to use it and report back on your decision and progress.

Thanks for the journal... my first comment to my wife after I came round after five hours of surgery was "have I had surgery yet?". Ok then...

I just passed a year after surgery and had undetectable PSA after 3, 6, 9 and 12 months. Every test is a nervous wait for the result though!

@thig350 Just jumping in to offer a couple of tips. I had my radical prostatectomy exactly one day after @mark10517ny procedure. My experience are similar to his, but some big differences.

My biggest suggestion is to make sure to prep your space. I am so thankful that I did a lot of homework on daily life after surgery and continence management.
Biggest tips:
• A recliner is so much easier for sleeping with a catheter than a bed. Also, easier to get up out of.
• I have focused on foods that are NOT bladder irritants post surgery. I think it has really managed continence issues after the catheter was taken out. I've avoided caffeine, carbonated drinks, alcohol, chocolate, artificial sweeteners.
• My catheter removal was a piece of cake-no real pain at all. Just a very brief sensation, but nothing to fret over.
• Diet wise post surgery, I focused on eating lots of high-fiber foods. And, boy, did this help! As your digestive system reboots, I had bowel movements within one day of surgery. Think oatmeal, bananas, whole grains, pears. Everyone is different, but high fiber has been super helpful. Also, taking Collace (stool softener) twice a day I think has been very helpful.
• Loose clothes for after surgery are definitely a big plus. I shopped at goodwill for some looser pants/sweats and was glad to have them.
• Having continence products (brief-pull-ups, Tena pads) ready to go was super helpful. The first day, I went through at least 10 pads. But, the next day, I was down to five. Now, 10 days after, I'm down to just a couple a day.

Recovery takes time, but I'm hoping in my case it's a one-and-done situation. Good luck with your decision making process!