My Story So Far - 53yo / PSA 130

Having a high PSA is Déjà vu. In 2012 I had a PSA of 92. GP said he never saw a number that high. ☹️ If it were me (because it was me!) I’d go surgery. I put together a web site that details my journey called Facing High PSA. You might find it helpful? It’s 14 years later and I’m still here. Good luck. Take care.

There’s a lot to unpack there about who said what and who is full of whatever…
But FWIW, surgery followed by salvage radiation therapy or ‘immediate’ adjunctive radiation therapy is probably your best bet for long term remission.
Forget the word ‘cure’ because it’s not a real thing; long term remission with low PSA and no spread IS!
You are already on ADT so that’s a good thing. Best,
Phil

A few things come to mind right away.

Have you had genetic testing? Somebody that gets prostate cancer this young may have a genetic issue that can make it more aggressive. Speak to your doctor about getting hereditary, genetic testing right away.

While they can spare the nerves with surgery when they do radiation they destroy the nerves. That results in being able to get an erection for a couple of years and then it usually goes away. If they can spare the nerves with surgery, then you can probably get an erection for a long time. The thing is, you are on ADT (Lupron) And it not only takes away the desire to have relations. It also takes away the ability to get an erection..

Were any of these things found in the biopsy intraductal, cribriform,, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive. You have seminal vesicle invasion so that already makes your cancer more aggressive. You can get a second opinion from a specialist in biopsies if you’re Worried about what you are being told.

If you decide on radiation, here are some more information about the ability to treat the prostate area again. (40% of the prostate is left after radiation). This is something doctors don’t usually tell you.
https://connect.mayoclinic.org/discussion/salvage-focal-therapy-and-surgery-equally-effective-after-radiation/
You really want to get a decipher test. That will give you a good idea whether there will be a reoccurrence and how soon. It also can guide treatment, A high decipher score usually means you need to have ADT longer.

As others have said, There is usually no cure for prostate cancer. You can have long-term remission, but the more aggressive, your cancer the less likely it will be long-term.

One thing you have to realize is that the treatments available today allow people to live decades. I’ve had prostate cancer for 16 years starting at 62. I’ve had surgery followed by radiation and after that had three more reoccurrences. I have the genetic problem of BRCA2, which makes my cancer much more aggressive. I’m still around today due to the really great drugs available. I’ve been undetectable for the last 28 months, But it will eventually come back again.

@jeffmarc Thank you so much for this useful information. Because my cancer is already known to be aggressive, my urologist said the genetic test isn't useful. Obviously, with surgery, they will analyze the cancer after the fact - another up vote for the surgical option. All of this is really helpful.

I remain inclined towards surgery - not least because my surgeon is one of the best in the country and essentially said "I can take care of this" with an informed confidence that was reassuring. I fully expect recurrence and that it will be a chronic issue for the rest of my (hopefully very long) life.

Glad to know you're doing so well. Thank you again for sharing.

@mark10517ny
If you have BRCA or a couple of other genetic issues then there is a PARP inhibitor that is only used for people that have those issues. They can give you more time. This is something you really want to know.

Inherited genetic test are covered by insurance. You need to be proactive and tell your doctor you want the test not can you get the test.

Your doctor is wrong about this. Other centers of excellence like UCSF Always do a genetic test. Some drugs don’t work as well as others if you have certain genetic problems.

I am always stunned how dismissive (or maybe even hostile) some urologists are about anything that isa not surgery related. Do you already have an oncologist on your care team? They often have a more balanced opinion. But, definitely want to do a Decipher and also a germline test, even if it does not have any direct bearing the surgical approach.

I have never heard of a urologist recommending RT over surgery other than that the patient is too old and frail for the latter. I am of course not a specialist, but a 70% probability of sparing nerves in a cancer with your characteristics strikes me as implausibly high. Also, keep in mind that nerve sparing does not guarantee erectile recovery. I had full nerve sparing and still suffer from ED 8 months post-RARP. The two high volume surgeons I had spoken to both gave me a recovery probability of 90% with full nerve sparing. You should also ask if he means full nerve sparing. If he meant that he might do partial nerve sparing on both sides, that would lower your recovery probability to much less than 50% even if possible.

I was diagnosed with a 4+4 and 50% of cores positive (including 3+3), even if low volume in each core. I agonized over several months between RT and RARP. The decision, in the end, boiled down to whether ECE was likely present. If it was, I would needed SRT with a high probability, compounding the side effects without a big gain in cancer control. Given that you have already SVI, you have a high probability of needing SRT shortly after the treatment. When you have your RT consultation, make sure it is at a center of excellence. They will likely suggest HD Brachy to the prostate, EBRT/IBRT outside it, plus ADT for between 1 to 3 years (If they don't discuss Brachy as part of RT, look for another radiologist who does). This combination gives you very similar outcomes at least over 15 years than surgery with possible subsequent SRT with fewer side effects (but a comparatively high ED risk).

Best wishes to you! Unfortunately, if they found cancer cells in your seminal vesicle(s), it's not considered "prostate is confined." If the cancer cells are confined within the prostate gland, meaning that they have not broken the prostate capsule, then the doctors use the term "localize" (stage 1-2) However, if the cancer cells broke the capsule to nearby tissues, such as seminal vesicle(s), the doctors use the term "locally advance" (stage 3-4)

I know about this from my husband's PC doctor team. My husband has seminal vesicle invasion on the right side, which was found during his surgery in 2021. So, his stage was upgraded from localize (2) to locally advance(3Tb to be exact). To make sure that you understand, any scans, including PSMA scan, can miss microscopic cells that are very small. It explained a lot in my husband's case. the cancer cells in his right seminal vesicle was less than 2 mm.

Excellent, calm, objective, and hopeful post - thank you. We "all" were presented and discussed the options, and made our best choice. I was quickly and firmly guided by my physician to have the radical prostatectomy. I was "barely" a Gleason 3+4=7 with only 6-10% of "4" cells. I was very close to still being a 3+3=6. My urologist flat-out said that he never does Active Surveillance (AS), which only allows the cancer to grow, get worse, and perhaps spread to lymph nodes and elsewhere after it breaks out of the membranous capsule. That is known as "Extraprostatic Extension" (EPE), and when that happens, all bets are off. Your urologist really won't know "where" and "how far" the cancer spread. You'll likely end up with the phrase "surgical margins" on your post-surgical pathology report, which means the urologist left cancerous tissue in you which, along with your rated level or type of cancer, so you may see the cancer return within the first five years. If your disease is still prostate-confined, you stand a very good chance of success without reoccurrence. If you wait, or have ineffectual radiation that still allows the cancer to spread within five years, it may have spread to your lymph nodes, bladder, urethra, and even bones by then. That is why my urologist does not believe in AS: "you're just giving your cancer two years to grow and get worse." Active Surveillance often stops abruptly at 6 - 9 months because the PSA level keeps rising significantly, and the doctor says "we're done with AS...time to remove your prostate." Good luck to you...keep us posted as to your decisions and progress, especially what your surgical pathology report revealed about your cancer...if you have the surgery.

I'm 6 weeks post op on Monday. I'm 55 and was diagnosed roughly 2 years ago, I wavered greatly on my next steps back then. I didn't do a thing for a long time right away, especially from what I would frame as harassment from my 1st urologist. Their objective was not to assist me in making the best decision for me. I digress. Ultimately I did end up at RARP. It was the right decision, period. The advice that I received from my 2nd urologist in addition to viewpoints from several older men that were friends of mine I feel led me to the best and correct decision. This is how I looked at it..... most of the time all roads lead back to the prostatectomy. Both have similar side effects and in my opinion radiation can be worse. My cousin went thru radiation 2 years ago and it made his urethra incredibly angry.... scarring, etc that took a long time (months) to heal with the catheter installed. With the catheter installed it seems there is a recovery just from that. Ultimately it appeared to me that the potential for re-occurence is far greater post radiation and the possibility that you may still end up having it removed and the gift of going thru all or even more side effects yet again. I have been keeping a diary of everything I have went thru, not emotionally, but all of the stuff I was not informed or prepared to experience. I will gladly share my road thus far if you are interested. One thing that shocked me just 2 days ago..... read on..... I have been experiencing mild to severe insomnia post op. Just for fun, I googled it in relationship to RARP and of course, wouldn't you know...... over ONE THIRD of prostate removal patients experience mild to severe insomnia!!!! How these 2 things are so intimately connected baffles me!!! I think you are on the correct path by having it removed. I chose the path to get me the longest quality of life possible. If you would like to know more, by all means, let me know. It is helpful reading here everyone's experiences and frustrations and knowing there is a path forward for a normal, happy life.

@rlpostrp ....EXCELLENT advice and explanation. I was 3+4 in the beginning then after 18 months it had progressed to a 4+3 and after RARP (4 months post 2nd biopsy) pathology had moved it to a 4+4. Luckily and I mean VERY LUCKILY, after surgery my margins were clear (negative) with no EPE. I had pushed the envelope as long as I could, not intentionally, but having it removed sooner rather than later is a solid decision, given all of the factors.