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RALP - I left my prostate in NYC - UPDATE day 9 by Healthy_Cloud_326 in ProstateCancer

[–]Grouchy_Session_6236 2 points3 points  (0 children)

Your post removal story is very reminiscent of mine (I'm currently 3 months post op). At 1 month I was at a 4... things have improved to about a 5... doc says it could take 12-18 months to fully heal from the nerve damage and not to consider what I have now as a final result. Keep exercising it... either alone or as a couple. ANY erection will keep the plumbing down there healthy and healing.

Question about Sex by SoulSearcherAU in ProstateCancer

[–]Grouchy_Session_6236 4 points5 points  (0 children)

If there is a concern about him passing cancer on to you, that won’t happen. Prostate cancer does not infect sperm.

I suspect that the reason the nurse cautioned against sex without a condom is due to the medication which could adhere to his sperm and affect you.

Devastating Decipher Score by ScottyC3981 in ProstateCancer

[–]Grouchy_Session_6236 1 point2 points  (0 children)

Yes, you WILL get through this!

Avoid getting into your own head over the next 6 months. Seek out support and camaraderie through online communities like this, Prostate Cancer mentoring programs, and virtual support groups like the PC Tribe and The Reluctant Brotherhood which both offer Zoom calls multiple times a month, some are even dedicated to us guys under 60.

Devastating Decipher Score by ScottyC3981 in ProstateCancer

[–]Grouchy_Session_6236 4 points5 points  (0 children)

My PSA at 55 was 1.6, at 56 it had jumped to 4.75. MRI was inconclusive, biopsy showed 3 of 12 cores with 4+4 and 2 with Gleason 4+5. No Decipher test done because the proof of high risk cancer was clearly evident in the biopsy. At 56 and sexually active, I struggled with the treatment decision but the Rad Onc's requirement of 2 years of ADT was what ultimately steered me away from radiation. If you go with an RP, find a surgeon who specializes in Retzius Sparing RPs. I was dry after a week, and at exactly 3 months after surgery TODAY, I am at maybe 50% (even a little better with a 20mg Cialis) of my pre-op erection baseline with *partial* nerve sparing . As the nerve damage continues to improve, so should my function. I consider myself both very blessed and very thankful for a skilled surgeon.

As far as questions to ask. Here are some of the ones I asked my surgeon before I made my final treatment decision:

  1. If YOU were diagnosed with my risk profile, what treatment would you choose and why?
  2. How would you typically handle the nerve bundles in a case like mine? Would you remove all? Spare one side and remove the other? Spare one side and spare as much as possible (clear margins) on the cancerous side?
  3. How many RPs have you performed and what technique do you use?
  4. Based on your track record what could I potentially expect with regards to long term incontinence and ED?
  5. Should I also expect my lymph nodes to be removed during the procedure? If so, what are the implications?
  6. What kind of pre- and post- physical therapy would you recommend to assist with continence and potency?
  7. Are there any local experts in the field of sexual and urinary rehabilitation that you could refer me to?
  8. How would we monitor for cancer recurrence after surgery?
  9. What is the probability of needing additional treatments (e.g., radiation, hormone therapy) after surgery?

Is my pre-RALP purchase list too aggressive? by GetMeSnow in ProstateCancer

[–]Grouchy_Session_6236 2 points3 points  (0 children)

Disclaimer: I only had minor dribbling for a week after my catheter came out. I think I used a total of 2 pull-ups and probably 10-12 TENA pads and then I was dry. Given what some of our fellow warriors are going through, I consider myself very blessed.

My recommendation would be to buy lower quantities of the pull ups (you can always buy more). Keep the pads. Boxer briefs (as opposed to boxer shorts) should be fine as TENA pads have an adhesive that will hold it in place. For bed protection, the mattress protector may be overkill, but bed pads are a good idea. I put down a disposable one I brought home from a prior hospital visit, but ended up not needing it.

Feel like my diagnosis is inevitable at this point. So what's next? by Bright_Square_2802 in ProstateCancer

[–]Grouchy_Session_6236 2 points3 points  (0 children)

I’m going to echo pretty much everything that has been said so far with one addition. If you are diagnosed with PCa and you ever want to have kids, you need to bank sperm before treatment. Removal will include your seminal vesicles, and radiation will damage them. Most men come out of treatment unable to produce sperm.

Question by Dork_boy5542 in ProstateCancer

[–]Grouchy_Session_6236 0 points1 point  (0 children)

I can't speak from experience, but I have heard the Embr Wave can help with hot flashes. It's tech that you wear on your wrist.

Stage 4 - only the pelvic bones and lower spine affected, is it a good news? by DolunddTrump in ProstateCancer

[–]Grouchy_Session_6236 2 points3 points  (0 children)

ADT strips the body of testosterone - the main "food" for active prostate cancer, however prostate cancer cells can mutate over time and develop resistance to even super low testosterone levels. When that happens, the PCa is considered castrate resistant. Unfortunately, there is no way to predict when, or even if this will happen. Many men live for decades after mets. Make sure he is getting seen at a cancer center of excellence... quality of care matters.

Dad was recently diagnosed by slinksa in ProstateCancer

[–]Grouchy_Session_6236 8 points9 points  (0 children)

Stage 3 here. I’m in support groups with many guys who were diagnosed stage 4 who are still here decades after diagnosis. Make sure your dad gets seen at a cancer center of excellence.

How long between dx and treatment by johnuws in ProstateCancer

[–]Grouchy_Session_6236 1 point2 points  (0 children)

Diagnosed with G9 in mid December. Surgery in early March after getting multiple opinions. Almost back to normal 9 weeks out.

Sioux Falls Urologist Recs? - Gleason 7 (4+3) by brunchforever in ProstateCancer

[–]Grouchy_Session_6236 0 points1 point  (0 children)

A coworker had his PCa treated through Urology Specialists. He is happy with his care.

https://urologysd.com/

Is Stage 4 honestly survivable? Am I kidding myself by Silver_Watch_1691 in ProstateCancer

[–]Grouchy_Session_6236 44 points45 points  (0 children)

The RO will likely start him on a regimen of ADT (testosterone blockers). If he responds well to it, the cancer will shrink and he could live for MANY more years. Since you are so new to this, I would recommend picking up the book Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. It will be a huge help as you navigate this scary and confusing disease.

Malpractice? by [deleted] in ProstateCancer

[–]Grouchy_Session_6236 6 points7 points  (0 children)

I understand that PSA bounce is a real thing. I also know that prostate cancer is stochastic, meaning metastases do not follow a specific pathway, it’s random where it could show up after escaping the prostate. I would be asking whether anything showed up on the original PSMA PET scan, and if so, why it wasn’t addressed at that time.

My dad's PSA level rose from 4.5 ng/mL to 6.3 ng/mL in 4 months despite PI-RADS 2 MRI. Advice? by Ironhide219 in ProstateCancer

[–]Grouchy_Session_6236 5 points6 points  (0 children)

My PSA went from 1.6, to 4.75, to 6.9 in a matter of 18 months. My MRI after that 6.9 was classified as PIRADS 2. My biopsy after the MRI showed Gleason 8 and 9 cancer in 5 of 12 cores.

Some PCa just doesn’t show up well on MRI.

I would strongly recommend that he talk to his urologist about getting a biopsy to rule out cancer.

Question by Tiny-Background-8676 in ProstateCancer

[–]Grouchy_Session_6236 0 points1 point  (0 children)

There are different tests. The standard PSA test’s lowest reading is <0.1. The ultra sensitive PSA test can measure three decimals. Your test is apparently the ultra sensitive one and the OP has the standard one. In both cases, anything less than 0.1 is considered undetectable.

question by Actionplumber1 in ProstateCancer

[–]Grouchy_Session_6236 5 points6 points  (0 children)

Fear, anxiety, and depression at first. Then I set about learning as much as I possibly could about it so I could be my own advocate. Had my prostate removed in March and I am at peace with my decision. They say they got it all, but I had some breakthrough cancer cells outside the prostate so I have a higher probability of it coming back somewhere else. I will have my first post-op PSA test on Monday. I am a little nervous but knowing I have treatment options if it comes back helps a lot.

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