So, looking over one's shoulder for the remaining time...

I had Gleason 4+5 and had RARP in March 2025. I’ve had four PSA checks since and all were undetectable (<0.10). Between the first couple I worried almost all the time.

After the second PSA test I sat myself down and worked a couple of things out. I created a motto for myself that I will live life to the fullest between quarterly blood tests. I also made a deal with myself I was not allowed to worry until two weeks before my next draw. In that time I would watch research on topics like biochemical recurrence (BCR), elevated PSA post RALP, radiation and ADT. That research was primarily to get questions ready just in case and to turn my worry into something productive.

I have not been perfect but this really helped me.

So far I am 15 months cancer free and living like it. I am a realist though. If it ever comes back I am ready to go back into fighter mode.

My perspective when I was told I had prostate cancer was to cure the cancer and the side affects were secondary. I had a prostatectomy in 2022 at an age of 69. The pathology showed Gleason 7 3 4 but two margins were questionable, I had cribform and EPE. As Phil said you plan for the worst and hope for the best. I have incontinence issues and ED but for two years what was important to me was the less than .02 PSA. I was accepting the side affects and enjoying my 8 grandchildren which gives me tremendous happiness. I have been on this forum for almost five years now and realized that I had a good chance of recurrence due to margins, EPE, cribform and learned from what others went through. My PSA then started to rise to .18 and they took a decipher test and it was .92 being very aggressive. I used this forum and my Drs recommendations and decided to have radiation with 6 months of adt. I am hoping for a cure even though the odds are against me. I complete my 38 sessions of radiation and six months of ADT on June 18 and then will go back to enjoying my grandchildren and watching my PSA and “hoping” it will stay <.02. The adt so far has been harder on me mentally than the radiation. I realize that if my PSA starts up again I will go onto adt and Nubequa. My hope is this will not happen but I have seen people like Jeff endure this and I know I will. My hope than will be and is now that they come up which eradicates prostate cancer so people in the future do not have to go through this.
Wishing everyone happiness always and wising for a cure to this for all. I do want to thank everyone on this forum for educating me and letting me know that I am not the only one experiencing these things and giving me a perspective of what to expect. It is a lot easier for me to be able to plan. Thank you everyone again😀

@paulsnoc
After 16 years and four reoccurrences, I’ve been getting monthly blood test for the last eight years. The only time I even think about it to be concerned is just as I’m about to click to open the test result. At that moment, I feel a little anxiety.

Used to be I worried about it for some time before the Test like you are doing, And I would worry until I heard what the result would be. Nowadays, I don’t even think about it until I get the monthly email that I know is my PSA result notice, And then I bring up the app.

What I’m getting that is that over time, the anxiety lessens.

I have to wait only about 1–2 hours between taking my quarterly uPSA test and seeing the result pop online, so there's not a lot of time for anxiety after they draw the blood. I just pop into the little Indian café across the street for a masala chai as a post-jab treat. My other bloodwork often pops while I'm in there; uPSA does sometimes, but more typically on the 2 km walk home, or shortly after I get back.

Sorry to hear you are joining the club. I'll give you a quick recap of my history and try and give you a few "pearls".

I was diagnosed 5 years ago at age 67. Great sex life prior. Had G9. Initially thought confined to the prostate but had limited metastatic disease 6 months later (oligometastatic). Successful treatment with local radiation (SBRT) to the spine met and had aggressive triple therapy at Johns Hopkins. Complete ED after surgery. Regained continence a year after surgery but then became increasingly incontinent after pelvic radiation.

You are relatively young and there is a very good chance you become completely continent a few weeks/months after surgery. There is a book recommended by my urologist (that I believe is excellent ) to help regain continence. Life After Prostate Cancer by Vanita Gaglani. Available on Amazon. Excellent $40 investment. Thorough explanation for why you become incontinent and how to regain continence (multifactorial-spoiler! -more than just doing Kegel's).

Post operative ED depends largely on whether the surgeon has to sacrifice the nerve bundles. Again, the younger you are and whether or not you had issues with ED preop are important factors as well. Many urologists recommend starting Cialis 5mg daily (generic version is cheap!) and using a vacuum pump if you do not regain nocturnal (or otherwise) erections after surgery. This helps preserve the erectile tissue in your penis and keep it from atrophying/shrinking from lack of use.

If you develop ED after surgery there are multiple options. The pills work for some men. Vacuum tube with penis ring (not for me). Trimix injections work great for many men (downside of having to put needle in penis, limited to 3x per week, no spontaneity, may scar penile tissue over time, gradually ineffective). The ultimate ED treatment is penile implant. I have discovered that some men get the implant at the time of prostate surgery (kind of extreme but ...). There is a very high satisfaction rate with penile implants->90%. Covered by insurance. I'm scheduled next month.

Lastly, the treatment of prostate cancer has advanced by leaps and bounds over the last decade or so. There are many clinical trials in progress. I don't have a crystal ball but I believe the significant number of prostate cancers will be treatable and/or curable in the next 10 years. By treatable I mean long term survival. Some oncologists already believe some men with limited metastatic disease may be cured with certain therapies. I tend to believe the positive.

Yeah, getting prostate cancer sucks. Some of the treatments suck. But prostate cancer has an overall better prognosis than many other cancers.

Last nugget. Find a Center of Excellence that treats a lot of prostate cancer. Find doctors that you trust. Become informed and ask questions. Blogs like these are great but remember that these are laymen and some of the advice is anecdotal; well intentioned but sometimes inaccurate or doesn't apply to your particular case.

Good luck to you! Feel free to message men if you have questions. Many people were kind enough to give their time and knowledge to me over the years and I want to pay it back.

Well, the main thing I suggest, as a post RARP person of six months, is that you really concentrate right away on performing pelvic exercises 2-3 times daily. I'm talking about pre-surgery, and afterwards once the catheter is removed. This should help you substantially with incontinence in particular, as well as ED. For that latter you may have to be patient, since even with nerve-sparing, the nerves are so easily bruised during the procedure (I heard it said if you just look at them funny), that it can take many months for them to fully heal and re-allow firmness. Wishing you all the best!

Well, it's natural to wonder about one's future when diagnosed and hearing those words "you've got cancer...!"

When I got my notification on 24 January 2014, it floored me, I had my pity party, then got up and got to work.

I was 57, two daughters, in middle and high school. Would over them graduate from high school, college, walk then down the aisle, see grandkids, what was my wife going to do when I passed first, sooner...

I'm high risk, GS 8, GG 4, after surgery, only 18 months to BCR, failure of SRT, rapid PSA doubling and velocity...

Here we are, 12+ years later, here I am!

Both daughters have graduated from college, they have steady vacations, haven't walked them due b the aisle, no grandkids though a grand dog...

Wife and I are now at our 36th anniversary, we've taken multiple vacations, gone to some great concerts...

You get the idea, a lot of living taking place.

One thing to consider is lowering your time frame, don't think of 10-15 years, rather, shorten that horizon to 3-5 years, will this work for that period, yes., ok, research is constantly changing and advancing the treatment landscape.

We are transitioning from population to individualized based treatment and from fatal to chronic.

Obviously, some 35k die each year of PCa so yes, you can die....

What can you do?

Stay informed, when (if) your time comes to make the next treatment decision, you know what changes have been brought about medical research and are entering mainstream clinical practice.

Discuss with your medical team the plan to monitor your PCa if snd when off treatment, frequency and type of labs, imaging, conduits, criteria for going back on treatment, if on treatment, de-intensification criteria

Also, discuss how to mitigate the side effects of any treatment, diet, exercise, managing stress, things your medical team can do...

Keep an eye on your overall health, physicals, labs, diagnostic tests such as colonoscopies, manage your heart health, blood pressure, cholesterol, weight...

In my 12+ years, three have been on treatment, the rest off. How, I don't know! Even on treatment I largely lived my life with the only difference being how I felt.

Lastly, go live life.

Kevin

Hi,
Look for an experienced surgeon that does the one incision Prostate removal as I have heard only good things as far as less ED and urine leakage. Great doctors+Great facilities= Great results. Do Kegal squeezes and pelvic floor exercises before surgery and after your doctor OKs after surgery.

Dave 3+4

@kujhawk1978 That's heartening.

I'm just coming up on 5 years (this fall) since I was disagnosed with metastatic prostate cancer in my spine at age 56. When I asked, my younger daughter told me she was sad I might not live to see her graduate, since we thought at the time that I wouldn't be around long.

Instead, I regained the ability to walk, attended her graduation, played guitar at her wedding, and met my first grandchild this year.

Hoping my next 7 years go as well as yours have. Still NED (no evidence of disease) so far on ADT + Apalutamide, after radiation in 2021/22 to both the prostate and the spine. 🤞

@northoftheborder

That's why when people say their medical team says they have "x" years I say BS...nobody can or should say...

Too many weapons in our arsenal now, yep, this damn cancer still kills but I believe we are rounding the curve on management as a cancer we live with as a result of advances brought about through research...

I mean in 2014 nobody was talking to me about radio isotopes, aka, "smart bombs" which would travel to the locations in our body which are PSMA avid and release there "payload!"

Just saying...