What proceedure did you choose or are considering

Hi Paul -

I am 76 and last year I had radiation along with ADT (3 six month Lupron injections). My PSA dropped to <.03 from a high of 20. No incontinence issues - actually peeing better than I have in m any years.

My Medicare Advantage plan covered all my work-ups to the 28 days of radiation, the radiation itself and all bloodwork and follow-up visits. I had a PSMA PET scan, CT scans and IMRT Radiation. While I maxed out my out of pocket expense for the year ($3700) thankfully Medicare covered over $250,000. I have no idea how anyone without insurance can pay for the excellent treatment I had. The charges for the scans and the radiation are outrageous but, so far it looks like my cancer is under control.

I am currently dealing with my first troubling side effect. I have developed chronic radiation proctitis - blood and mucus in the stool. I am scheduled for a colonoscopy on Thurs to check out how badly the radiation has affected my gut. It may be self limiting or treatable but if I have managed to kick cancer's butt, I can live with the side effects - with no regrets.

Good luck on your journey...

Hello Paul

I was diagnosed in November at 67 with Gleason 4+3, GG3 Intermediate unfavorable. Like you, I too am needing to make a decision which I am really struggling with. I think quality of life is important to all of us and the choices all kinda suck. One Doctor at Fox Chase thinks I may be a good candidate for IRE Nanoknife Focal Therapy. Evidently, if your in the medium risk group and have a tumor that is located in an accessible spot, Focal Therapies like TulsaPro and others can work having likely less side effects than RP or RT. The IRE Nanoknife uses electricity to kill the cancer. From everything I've read, it has little to no side effects. It still is considered experimental, but is available at several prestigious institutions such as MSKCC, John's Hopkins, Fox Chase, and others. Just that fact tells me there's validity to this technology. I think with all the available Focal Therapies that treat only part of the prostate gland, there is a 10-15% higher chance of recurrence with low to med grade cancers. BUT, what I like about Nanoknife is it's claim to be less damaging to surrounding structures than any of the other therapies. You may be able to have it more than once if needed, and still have the options of RP or RT. I have no idea yet if insurance will pay for it, but am seriously considering going this route to start my Stinking Journey. I think the worst thing for me is the indecision. Once we make the choice and take the first step I'm hoping to get some stress relief?

Hi kuching,

Sounds like you still have Prostate cancer cells somewhere in your body. I would suggest getting with your doctor team(Urologist and Oncologist) to see what is going on. A PMSA PET scan should be able to find the metastatic cancer. Might want to start a new thread so as not to confound this one.

Dave 3+4

Yes to the above comments. Especially considering your Gleason 9 case.

Locally advanced prostate cancer with pathological seminal vesicle invasion (pT3b) is a very high-risk disease associated with worse outcome and is considered difficult to cure by radical prostatectomy alone. However, the ideal protocol for additional therapy (adjuvant or salvage) is still debated

Hi Paul and I agree with the above comments.

I am 68 and had my prostate removed (DaVinci) in early July. My physician prescribed 1/2 viagra immediately following surgery to increase blood flow in the area. Standard catheterization post surgery and then the diapers and pads. As I'm now closing in on my 3rd month post surgery and the incontinence is all but resolved. I still wear a protective pad in my normal underwear but that's more for my confidence than actual need. The occasional drip comes through if I don't Keegle as I stand but no real issues. First PSA test last month was a non-detect (<0.1) and I'll test again in the next week for my three month follow-up. I exercise without any real issues. Had some discomfort in the region around my bladder if I didn't sleep on my back for the first few weeks but that's fairly well resolved itself and I can return to sleeping on my side with not real issues. Erections aren't as they we but the viagra does help. The point of all this is that there is life on the other side of surgery and it's pretty good. I'm forever grateful for my surgeon and continue to believe it was the right choice for my circumstance. While I initially considered radiation, I changed my mind upon learning that initial radiation moved any future surgery into a salvage operation with far less effectiveness. I'm grateful that I still have the radiological option available should the cancer return but my wife and I have concluded that hormone therapy is off the table for us as I already suffer from anxiety and PTSD. I hope all this helps but feel free to fire back with any questions you may have. Like you've probably already heard from the previous responses, you're far from being alone.

Best,

Ron B

I did 35 IMRT sessions totaling 68 grays of radiation several years ago, and I was able to secure an 8:00AM appointment every morning, so that it had the least impact to my daily work routine. It appears that you got through it, so from here on out, it is just one day at a time, so make the best of them.

hopefully you had genetic testing done ..if the cancer is of low grade you made the right choice is 69 years old and he had about the same diagnosis as you went through radiation and he went through it fine with virtually no side effects whatsoever and his PSA is now dropping that it will take about two years to three to drop to its lowest point, but I think you did choice

I am pretty much the same situation as you. I am 59, MRI PiRAD 5, Gleason Score of 7 or 8 (two pathologists disagreed) I was diagnosed in September. I had a PSMA PET scan that indicates no metastasis, I have discussed with 2 surgeons and 2 radiation oncologists. The surgeons both disagree and the radiation oncologists both disagree with the way forward. In discussing with my wife, I have decided on RP laproscopy with DaVinci. The surgery is schedule for 10/30. Honestly, it looked like the best way forward for me. It took me a month and a half to find urologists that I had confidence in. It is worth you while to find a urologist you are comfortable with. The internet has a lot of great resources (some crappy ones also). Stay with respected sources. Ask questions of the urologist and oncologist.

I researched everything. I was 3+3 and 3+4 with tumors that didn't show up on MRI (caught it very early with a biopsy).

I found the treatment comparison charts on this website to be really helpful for me in making a final decision

https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/

I opted for LDR brachytherapy by Dr Steven J. Frank at MD Anderson in Houston. My insurance covered it, my tumors were too small for some of the boutique treatments like TULSA, etc to work and I didn't qualify for any of the studies. I believe my total treatment out of pocket has been around $3000 (plus travel costs) which was my personal out of pocket max under my insurance plan.

It's only been 3 months since treatment so things will likely get even better over time.

My side effects have been:

. Perineum area was a bit sore for a week or so, but not as bad as I expected

. Fatigue and weakness have lasted longer than I expected. Getting less now that I've been exercising regularly

. Light headedness when stooping down then getting back up

. Urinary urgency. Doing totally fine then suddenly my bladder is screaming for everyone to clear the way so I can get to the toilet. That has almost completely gone away now.

. Getting up between 1-4 times per night to urinate. That has improved to only once per night lately. I noticed when I don't drink soda I get up less and the urgency is much less. When I drink soda again, they both seem to come back.

. I rarely have any incontinence at all. If I do it's because I waited too long to head for the bathroom. I wore Depends briefs for a month or so after treatment just in case, but no longer do

. Erections are not quite as hard. But are sufficient. At rare times it's more difficult to get one at all. It's mostly normal

. Lower libido

. Climaxing feels a bit different and are mostly dry ejaculations

. Very intimate patdowns at airport security when they pick up radiation issuing from my crotch. And they've caught it every time so far. That should stop as the half life of the "seeds" diminishes.

I found that the Airbnb accommodations around MD Anderson in Houston were fine, but I wanted something better and I wanted something with a separate bedroom and full kitchen so after my treatment, my wife and I rented and furnished an apartment that is 10 minutes away in a very nice area of Houston (Bellaire).

We rent it out now that we're rarely in Houston anymore.

We wanted to provide a nicer housing option for other folks coming to town for treatment for the same price or less than a hotel room. It's one way of helping people have just a little better experience during a really hard time.

I'm happy to answer questions about my treatment and experience since then. I still work full time so am not always available to monitor here.

If anyone has questions about my experience or wants to see the apartment you can reach me through https://deylight-wellness.lodgify.com

Best of luck to you!