My Story

Cancer is non-linear, not well understood, and often unpredictable.

The decipher test says you have a good chance of a monster lurking.

Consider the fact that you have been warned off of radiation as primary treatment (if memory serves, something about your past). What happens if you need follow on radiation because some of it escaped to nearby areas?

Jason, I'm not at all surprised that you're finding relief after making a treatment decision. I will say that the most important thing you can do to ensure the best outcome is to choose a highly experienced surgeon. The morning of my surgery I was very relaxed, taking great comfort in knowing that my surgeon and his medical team would all be working for me.

If you ask for it, you'll get plenty of good suggestions from Forum members about preparing for your recovery (what to have one hand) and tips for making you as comfortable as possible in the first weeks after surgery. Follow carefully all the pre- and post-surgery instructions you are given by your medical team.

I think my post-RP recovery of urinary continence was fairly typical: I noticed daily improvement for a few days, followed by weekly improvement for a few weeks, and finally monthly improvement up to full continence at roughly 6 months. Also, you are about 15 years younger than I was at the time of my surgery

All the best,

Djin

JasonB176 said...
After discussing with the urologist who had initially recommended AS, I have decided to proceed with surgery. There's just too much risk now to play around anymore.

My surgery date is already set for 10/21/24. I am nervous but in certain ways relieved. I've begun doing kegels again in preparation.

Hopefully I'll recover quite quickly given my age of 52 and being in decent health otherwise.

Like you, I toggled back and forth between treatment decision making. I finally decided to proceed with robotic surgery. I was 52 years old, just like you. My outcome has been good so far. Aside from the stupid catheter, I actually enjoyed my recovery and time off at home. One year later, most of my systems are working better than I could have hoped for.

Good luck to you Jason. I wish you only the best outcome!

There was a research study discussed here several years ago about treatment regret. As I recall, the most significant finding was that regardless of outcome---cancer control, side effects, long term issues--the key point is that men who did their research and due diligence before selecting a treatment had much less regret than those who went from diagnosis to treatment without asking any questions along the way.

I would suggest the microcosm that we see in this forum has similar results.

Jason, as has been implied by others, it seems like you made the right decision for YOU, simply by virtue of the fact that you did extensive due diligence. You have every reason to go into the surgery as confident as anyone could be that you made the right choice and that in all likelihood, with an experienced surgeon as you have chosen, you will have a good outcome

Best of luck we are all behind you.

Jason,

From now until surgery--walk, walk, and walk some more. If you aren't already, learn how to do kegals, and start them. Eat healthy, with plenty of veggies. I'd suggest you obtain a few things for your week at home after surgery while you have the foley in:

1. Alcohol wipes for cleaning the tip of your penis where the tube comes out
2. A tube of antibiotic ointment for the same area after cleaning
3. Because things can leak and drip, absorbent pads for your chair. (the doggy training pads are cheaper and work well)
4. A small bucket to put your catheter bag in--it catches leaks AND makes it easier to carry around.

Plan on wearing loose fitting gym shorts. Make sure you have a table next to your recliner to keep your water mug (yes, push lots of water), your tv remote, and your books/magazines.

Buy a bottle of dulcolax, and start taking it when you get home from the hospital. Ask your doc for a scrip for the drug for bladder spasms. I never had them, but I've heard they really suck. In some men, the foley triggers them. Your doc may give you a scrip for an opiate for pain--try not to take it very much--opiates can really cause bowel problems.

After the first day or 2, strap on the leg bag and go for a walk at Home Depot/Lowes. You'll be surprised how even a 10 minute walk wears you out.

Keep us posted!

Thanks for all the advice. I have my video appointment on Tuesday with the surgeon in preparation for surgery on 10/21/24 and want to compile a list of things that I'd like to discuss. This is what I have in mind so far. Are there other things I should mention?

*Will he prescribe Cialis and when should I start it?
*Will he be taking some lymph nodes regardless of how things look or only if it appears the cancer has left the prostate? (I am very much hoping he WON'T take any because of potential complications.)
*Will he prescribe pain meds for stomach spasms in addition to general pain meds?
*Will he perform the entire procedure or allow someone else to do part of it like a med student?
*When will I know if I have positive or negative margins?
*How will I know when it's safe to begin cycling and/or strength training again?
*Will my first PSA test be the ultra sensitive version or regular? (My local urologist already has ordered a regular one. I also have a physical next month when other lab tests will be ordered and *DON'T* want any PSA results until the proper post-op schedule.)
*Will I be able to drive myself for catheter removal the following week?

Thanks.

Regarding lymph nodes, I would let the surgeon remove all the lymph nodes that he can identify in the "template" he typically uses for men with your Gleason score and workup status. These standard templates are anatomical areas bounded by different landmarks (e.g. the triangle formed by these arteries and this muscle, etc.) They get larger in size (to include nodes father away from the prostate) as one's biopsy Gleason score goes up.

Even if there is no macroscopic (or even post-RP, microscopic) evidence that your cancer left the prostate locally, cancer cells can still migrate from the prostate via lymphatic draining and take hold in regional lymph nodes. Fortunately, the nodes closest to the prostate are more likely to be positive than those father away. As a G7 status pre-op, you should have only a few nodes removed, so you are less likely to have complications from lymphedema (given my G10 biopsy, my surgeon removed 16 nodes--fortunately all negative for cancer, and I had no negative effects at all--of course, we are all different).

IMO it's good to have some indication about your lymph-node status. Your Gleason score could be upgraded after surgery. If that should happen, I don't think you want to be left in the dark about lymph-node mets. IMO, all information about one's cancer is precious!

The first post-RP PSA test is almost invariably the standard test (usually done at about 6-8 weeks post-op): you want to be below 0.1 (<0.1). Once you've got that result, along with your post-RP path report, you can discuss (or revisit) with your uro both the type of PSA test and the testing frequency.

The post-RP pathology report is all-important. It will include information about the status of the surgical margins and much other information, including the status of every lymph node removed.

Djin

I was supposed to have my video appointment today. It turns out the doctor was with another patient so he had his nurse come on the video. She was able to answer most of the questions but the two key subjects that I wanted to discuss with the surgeon were more about the decipher genetic report and how my recent rectal surgery would affect things. Even after 50 minutes from my appointment time, the doctor was not available so he called me about half an hour after that. We only spoke by phone.

He again thought I was the one who asked for the decipher test. I explained that I never asked for it but was just told I was getting it. He was surprised that nothing was said to me about what the report could mean and how it might affect things. As it turns out, I can see why. He asked me if I've read the report. I replied that I have not seen it and that I was only given the score of .61 - high risk. In actuality, the report itself is very important. There is far more than just your final score.

He went to find a copy of my report which took several minutes. He came back and read me the report. I kind of went into shock as I listened. The report detailed four areas where I'm at high risk and why the bottom line leaves me with a 24% chance my cancer has *already* metastasized. The doctor said that report is not a tiebreaker but....I forget his exact wording...but to the effect that it was a sledgehammer and that I absolutely need my prostate out ASAP.

How can I reconcile this with what happened in March? The other surgeon in March told me I needed to have surgery soon but he was against the genetic test. The one who will do my surgery admitted that he rarely orders one and didn't recommend one in March as a tiebreaker but just told me to do AS. I guess I can be thankful my local urologist did order the test in August even if he didn't explain anything about it.

The bottom line is that the surgeon said that with news of the genetic test and the fact that I can't have radiation will mean that he will have to be more aggressive in what he removes. Now I really fear for my urinary and erectile function.

I'm just at a loss. It would seem in hindsight that ALL Gleason 3 + 4 patients contemplating AS must have this test! I never would have agreed to AS in March had I known the alarming results of the decipher test.

To further add to the gloom, the surgeon said that my recent rectal surgery will complicate the removal of the prostate but that he will do his best.

Lastly, his nurse told me that it sometimes takes 3 weeks to get the pathology report to learn about my margins. I have never heard of it taking this long.

I just don't get it. My PSA dropped, the DRE was the same, and most importantly the MRI from last month showed no change in the cancer and yet I'm told I have a 24% chance of it having already spread.

Jason

24% seems like a high risk situation, but a 76 on a test in school is a C. Not an F. I'm not trying to make light of it, I'm expressing the positive side.

You are in between a rock and a hard place in some ways. I can hear your fear and worry, and the surgeon certainly sounds concerned--but confident he can deal with it. This is what you need now: a surgical team that has a proven track record with complex situations.

Breathe. Try to relax. Talk about your fears. And then Vaya Con Dios into the OR. See you on the other side!

I have read the entire thread previously and I know there are concerns that make radiation a poor choice. I do not recall if there were any discussions if radiation is at all feasible as a back up plan if the surgery doesn’t get it all. The possibility exists there is some PCa in the local lymph nodes that radiation could mop up. It might good to know if the docs have an opinion. I guess it could be, no way, we just can’t do radiation at all. Or maybe it could be we will just have to radiate after surgery if there is no other choice?

I really don’t load you with more things to think about and more stress, but I think it’s always a good idea entertain scenarios.

Let’s just be hopeful that surgery does the job!

Congrats on getting surgery behind you, Jason! I'm sure you've had loads of Forum suggestions to help make your recovery go as smooth as possible. Follow all your med team's instructions, walk comfortable amounts, and don't let yourself become overly constipated.

Best of luck on your path report and first post-op PSA!

Djin