Need some support for RARP Decision

54 here and 3 + 4 but, more importantly, 0.68 Decipher. I was told by 9 doctors that RARP was the way to go, given my age and good fitness. I spent 5 months beforehand hammering my pelvic floor both with a pelvic floor therapist who specializes in men (there IS a difference with male centric therapy) as well as my personal trainer with a focus on pelvic floor (which she specializes in).

I walked away from RARP with zero incontinence, zero ED and relatively unscathed. Feel free to PM me if you want to talk more.

I was diagnosed at 62 and had surgery. I came back 3 1/2 years later and I had to do radiation. It came back again, 2 1/2 years later, and I went on Lupron. I’m now 77 and 2 drugs later, it’s holding the cancer back. I’ve been on ADT for eight years. I have a genetic problem BRCA2 Which is a factor in my cancer coming back.

After surgery, they raised my Gleason score to 4+3. This is pretty common.

One thing people don’t realize, when they have Radiation, is that over long periods of time it can affect other organs. Radiation definitely affects some organs, by making them harder.

You are pretty young, If you have surgery, you want to have nerve sparing surgery so you have a chance of getting an erection on your own after surgery. That didn’t exist when I had my surgery.

You may be incontinent for a while after surgery, Don’t panic, Most people get it back. I had no problem at all after surgery, but I know the results vary considerably.

I recovered from surgery quickly and was working On client’s computer problems, in their offices, four days after the surgery. Some people take longer, Two weeks to three weeks. The thing is, there’s not a lot of pain after the first day and Tylenol is usually all you need. The biggest annoyance is the catheter which has to stay in for at least 7 to 10 days. I had to have it for two weeks, but I went to many clients offices and nobody ever knew I had surgery or a catheter.

Have you had hereditary genetic testing? Has it been offered to you by a doctor? You can get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
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Prostatecancerpromise.org

60 here and was diagnosed in early Feb with Gleason score of 4+4 type 4 High risk/aggressive. No spread completed a PSMA and MRI. Urologist and Surgeon both agreed that a RARP was the way to go. Had my RARP in May, surgeon was able to do nerve sparing on one side standard disection on other. Post RARP my score was adjusted to 3+4 Type 2. I had some slight dribbling/ leaking after my RARP but no major Incontience. On low dose Cialis and slowly getting my ability to get Erections back. Currently getting Pelvic Floor PT which will end soon as Survivor 5280 points out make sure to get a PT that does Male centric PT for Pelvic Floor Training. I have my Post Op PSA in August and other than some Anxiety over that I am doing well. If you have questions Feel free to PM as well.

You are in one of the best forums for this. This group is amazing and I feel lucky to have found them. As many posters have said welcome to the club that no one wants to join!

This paper looked at all the factors that you likely already have: https://www.nejm.org/doi/full/10.1056/NEJMoa2214122

My experience with active surveillance —> I was diagnosed with PCa in early 2012 at 56y with a localized, 3+3=6, PSA of 4.2, and chose active surveillance. I made a commitment that should my PSA ever reach 10, or my Gleason ever reach 7, or my biomarker (genomic) test ever have a negative result, that I would seek active treatment.

One of the understandings I had with my doctors was that quality-of-life and successful treatment were equal priority for me. That set the basis for us working together and agreeing on a treatment plan.

I was on active surveillance for about 9 years. During that time my urologist (a surgeon) game me referrals to specialists: focal therapies, brachytherapies, and external radiation therapies. I attended webinars/seminars (too many to count), and became (what I refer to as) a “student of prostate cancer.”

Eventually, my Gleason did reach 7 and a biomarker test indicated that I had “exceeded the threshold for active surveillance.” By then, I had already made my decision.

So, at 65y/o (in early 2021) I decided on 28 sessions of proton radiation + 6 months of Eligard + SpaceOAR Vue. PSA now varies between 0.35-0.55; most recent PSA test was 0.473.

Good luck with your decision!

My best piece of advice is to go to a recognized NCI "cancer center of excellence (CCOE)" if that's an option available to you. Google it and you'll easily find one. I did (Mayo Phoenix) and I was very happy I did. I felt the advice and care was outstanding. Also, I'd recommend Dr. Patrick Walsh's Guide to Surviving Prostate Cancer Paperback – October 3, 2023. It's on Amazon and it's the best $20 I ever spent. It really helped educate me on some key points in my decision making. In the end I felt surgery was the best option for me and that's what I did on 6/2024 (at age 70) at Mayo Phoenix. So far the results have exceeded my expectations. I consider myself fully back to normal with only very mild ED that continues to slowly improve. Whatever treatment you end up selecting, taking the time to find the best care team you have access to will be time well spent. I'm not a medical professional but I think the expertise and experience of the doctor is probably as important as the treatment selected. BTW, be sure to query this site and you'll find many threads on whichever aspect you're interested in. Also clicking on one of our names will allow you to see past comments. That said, don't hesitate to ask a lot of questions here on the forum. Best wishes.

I just joined here. I just found out I have a lesion on my prostate. My PSA was 11, 5weeks ago. It was an 8, week ago. Waiting to get a biopsy(first one) aug18th. This waiting around is tuff.

I know lesion is not good, but find it unsettling the urologist said I have cancer with out this biopsy, and not having all the data.

I guess I’m so nervous about picking the right cure, because after doing some reading on this disease, it sure does vary from person to person. Sure hope I pick the outcome you have had.

Thx for sharing.
Jeff

@dean007 and @85lowrider

I had a PSA of 11. After much research, a Gleason of 3+4 and a low risk Decipher test, I decided on an mri guided radiation machine, the MRIdian. 2 mm margins vs 3-5 mm for other forms of radiation, and potential side effects was a priority for me. I did have spaceoar inserted. I had 5 treatments and finished in February of 2023. Slight restricted urination after my third treatment which went away overnight after taking Flomax. No pain, bleeding or issues to this day. I was treated by a Center of excellence trained radiation oncologist.

I advise RARP. Get the cancer OUT! Peace of mind. Quick recovery. I've had dental surgery that was worse than Da Vinci surgery.

With prostate cancer, much depends…..

Remember that PSA is not cancer-specific. The PSA number itself is similar to a “check engine” light on a car; it indicates that something may be wrong, and further checks should be made “under the hood.” Might be as simple as a UTI; might be BPH; might be more serious, such as prostate cancer. Just need to have further checks. No need to panic, or rush to a quick treatment decision, or get overly concerned.

However, if by “I just found out I have a lesion on my prostate” means that you just had an MRI that identified a PIRADS 5 lesion, then it’s highly likely that you have clinically significant prostate cancer. There’s no way to be 100% certain until you have the biopsy results.

As for picking the right treatment - (I never use the word “cure” when it comes to prostate cancer because recurrence is so common) - it depends on the diagnosis, your priorities, and the quality of life you expect. Let the numbers guide your treatment decisions; try to keep emotions and dark thoughts in check.

Once you get your initial diagnosis, take your time, gather as much testing information as possible, and research like you’re studying for a final exam.
If you take control of the situation, you’ll find the treatment that’s right for you.

Thx!!!