Seeking Wisdom and Guidance

@samidh
Not sure why you posted this. I was responding to somebody else and I see no messages from you in this thread.

Was there a question You were looking for an answer to?

First, my sympathy to you for the loss of your sister. That is hard at any age and time of year, but even more so at Christmas. I think you have arrived in a good place in this blog. First, we are in fact that "subset" of men who are either newly diagnosed or whose cancer returned at some point. The men who had their prostatectomy and have no issues thereafter, never come here to contribute...they don't need to. So, everything you read may make it appear that "everyone" has post-prostatectomy issues, but that isn't true. But it is important to know that there are actually several kinds or categories/grades/classes of prostate cancer. They all respond differently to surgery and treatment, but your idea of genetic testing is good. When you have your biopsy, INSIST that your doctor send your prostate tissue to Veracyte Labs in San Diego, CA for what is called the Decipher Test. It is their developed, proprietary test...no one else offers it. It is insurance and Medicare approved. It is a test for 22-prostate-specific cancer genes that offers a numerical test report score of 0.1 to 1.0. You want your score to be as low as possible. Based on what genes you may have, it determines a 5-year, 10-year, and 15-year longevity, stratified risk assessment for you. Even with my 0.50 Score...dead in the middle, my possibility of death at 5 years, 10 years, and 15 years varied between 4-7% based on what genes I did or didn't have. That said...
I have often written here about the biopsy-yielded Gleason Score as being "just the tip of the iceberg." If you have a Gleason Score of 3+3=6, that is the lowest score you can get if you have cancer, but...you still have cancer. You have fortunately caught it early before the part of the "iceberg" that lurks under the Gleason Score "tip of the iceberg" can get worse. And...the Gleason Score in some ways means nothing about the pathology and nature of your particular cancer. My physician was overly confident with my Gleason 3+4=7 which is a low-moderate risk cancer. You can also have a 4+3=7 which has more pathology. BTW...the score is created by the pathologist scanning microscopic slides of your prostate tissue. They make one full pass (examination view) of the slide and decide what the prominent cell type is. In a 3+4 = 7, the prominent cell type is a 3. Then they re-scan the same slide and look for the next most prominent/occurring cell type. That is the other half of the additive equation. So, if you are a 3+4 = 7, your dominate cell type was 3, followed by the second most prominent being a 4. A 3+3=6 has no grade "4" cells. Obviously, a 4+3=7 means you have a more developed cancer with a cell type '4" as most prominent, with fewer "3" cells. The scoring goes on from there. Many men diagnosed later with a more advanced cancer might be a 4+4=8 or a 4+5=9, or a 5+4=9. And here is the big..."BUT"...my urologist told me that he was going to "take" my prostate (I was going to have a prostatectomy) even with a low-moderate risk 3+4=7 Gleason. I'm glad (sort of) that I did. The surgical pathology exam of my entire prostate, seminal vesicles, and vas deferens were such that my tumor had extended outside the thin, membranous capsule that encases the prostate. This is called Extraprostatic Extension or EPE, and it is NOT GOOD. Beside of EPE, my surgeon had a tougher time getting "all" of my cancer out of me, so I have what is called "Surgical margins" where tumor cells were seen right up to the edge of the tissue that was removed, and that means there was cancerous tissue left behind in me. This too is NOT GOOD. Then there are microscopic features that can occur, like Cribriform Glands where your prostate tissue spread out on a stained slide, looks like Swiss Cheese with the big holes in the tissue. This is also NOT GOOD. You can also have one or both seminal vesicles showing invasion when the EPE allowed the tumor to spread into the adjacent seminal vesicle(s). This too is NOT GOOD. I had all of that even though I had a seemingly low-moderate risk Gleason score of just 3+4=7. My urologist was humbled and solemn, saying "your cancer is more advanced and aggressive than I thought." So, again, the Gleason Score is just the "tip of the iceberg" that only initially tells you the categorical grading or rating of your cancer cells, but it tells you nothing of the degree of microscopic pathology of your cancer, that can only be known when your prostate is surgically removed, and examined microscopically to a much greater degree (more tissue to look at).
There are unpleasant consequences, both temporary, and some permanent for some men, of having a prostatectomy, but the good news is you no longer have this slow growing cancer in you, and you will increase your longevity, especially with the lower Gleason Score that you will hopefully have. In other words, a man with a 3+3=6 or a 3+4=7 Gleason score is less likely to have serious pathology, than a man with a 4+5=9 or a 5+4=9 Gleason Score. The Decipher Test mentioned above is important though. You could have a low Gleason Score but have an unfavorable genetic makeup such that you have a higher risk for lower longevity, all while a man with a 4+5=9 might have a really low Decipher Test score because he lucked out and didn't have the worst genes that would have driven him to a higher risk category for a shorter life. So, as you can see, there are a few important factors. Most of all, if your biopsy comes back with a definitive cancer Gleason Score, I side with what my urologist said when I asked about my options including Active Surveillance: "You HAVE cancer...there is no point watching and waiting for two years of Active Surveillance because it will only get worse...it is not going to go away or heal itself." That is all I needed to hear, so I did the radical prostatectomy. Yes, I hate the urinary incontinence, but for most men - me included - your continence restores itself within a couple of months, maybe up to a year. Sam for your sexual function. I am nine months post op, but I have not had one erection, despite my urologist preserving the neurovascular bundles that are necessary for an erection. I was told that basic healing, including resuming your ability to have erections, can take a year or more. A lot of men get/resume erections quickly post-op, some take years or never do. It's a crap shoot. So, just listen to your physician. If you feel the need for a second opinion, then get it. Do what you feel is best for you, but allow the expertise of your physician to prevail. Good luck to you. Keep us informed of your status and progress.

@pesquallie
When I read posts like yours I know how lucky I am to be a patient at Mayo Jacksonville. Every test, every doctor appointment is put into my history and patient portal. When I see a doctor at Mayo Jacksonville they see all my test, all my doctor appointments and every one I see says something about I see you saw ___ and had this test done.

I know we can't all have access to Mayo's and other outstanding medical institutions and just passing on how lucky I am.

I’m glad you have everything scheduled so soon. It sounds like you are primarily dealing with anxiety about the unknowns, which should start to become “known” for you jn just a few weeks. I was diagnosed (G7, 3+4) a month ago, and for me the weeks leading up to it were worse than the weeks since. When you have so many unknowns, your mind tends to fill in the blanks with worst case scenarios — at least mine does.

In my case, the diagnosis, though still cancer, was more favorable than what I was fearing. Hopefully yours will be even better.

I’m a huge fan of educating myself, and this group has been the best forum for me to do that. That said, obsessing about cancer is not helping us. One suggestion might be to monitor and limit the time you spend online researching, and fill that time with things you enjoy — distract yourself a bit now and then.

This month will probably feel very long, but then you will have some key information that will help you figure out what comes next. Who knows, you might be AOK and able exit this group! If not, there are many options to consider and this is a great community to learn from. All the best to you.

@kujhawk1978 your pathology report indicates no positive margins, no EPE, no SV & didn’t see initial LN involvement. I wondered if radiation would kill any microscopic local CA. I still like idea of known cancer hone & ability to salvage radiate.

@stldadof4
Agree. Got to have other things to do and try to find those that bring a smile or enjoyment.

When I am posting a reply to someone dealing with stress and anxiety (I am also on 5 other forums on MCC) I always mention mental health and finding something you like to do.

I exercise a lot and one of my favorites is water aerobics. I do it 5 days a week. Have about 10 out of 40 in class who are men. The class exercises in water with water weights to music and instructor. Just so much fun you don't even know you are exercising. We are all smiling and laughing so it is a great mind relaxer and getting you mind of things bothering you. Some of the new men and women who take first class talk about had not idea was that good of a workout.

I also post how important hobbies can be as exercise is not for some. Having a hoppy you like to do will also help move you away from stress and anxiety bring enjoyment. I have mentioned many times that history books always mentioned FDR and his love of his hobby "Stamps." He would spend a lot of time working on his stamp collections even during WWII. He also like to swim (in water you are almost weightless so compensated hid inability to use his legs). Many books talked about how much he liked to go to Warm Springs GA and swim because the water had some much minerals in it he was weightless.

@kujhawk1978

DRE did not detect my cancer and my family doctor said I had a large prostate while the NPR said I had the prostate of a teenager while the biopsy also said I had a very small prostate.

@lyricw

When my surgeon reviewed the pathology report with me after surgery in March 2014, he said I should not have any problems in the future.

I'm thinking "Mx," they don't know if it has metastasized....!

I plugged the numbers in to MSKCC nomogram and it said 30% chance of BCR.

That's a 70% chance of not...

15 months later...

Would having elected to do adjuvant salvage radiation therapy to the prostate bed after surgery have changed the outcome? We'll never know. The pathology report didn't support it.

I'm also surmising that my PCa was already in the lymph nodes, that it was nit localized. So, anything that just radiated the prostate bed was doomed to failure.

When we did SRT starting in March 2016, the standard of care was to radiate the prostate bed only. There was data emerging from clinical trials as well as what Mayo had been collecting on BCR in high risk patients, that the pelvic lymph nodes were already involved and they needed to be included in the radiation treatment plan as well as short term systemic therapy, six months.

I inquired about that, my medical team pushed back, no long term data to support. I acquiesced, SRT was an epic failure. Again, would the addition of radiation to the pelvic lymph nodes and six months systemic therapy have "cured" me? We'll never know.

In 2023 when my OSA started rising, a PSMA scan showed a single lymph node active. Data was emerging that MDT by itself may push back the need for systemic therapy in that situation. We opted to add 12 months systemic therapy knowing there was more than the PSMA scan could see.

@kujhawk1978 I appreciate your sharing. It helps many people. I have second prostate biopsy scheduled in 2 weeks. 2 years ago single MRI pirad 4 DX inflammation. This time 2 pirad 4s & 1 pirad 3. So, I am preloading research for 69 year old planning for 90.
RARP seems final but BCR >25% long term. RT equivalent 10 year BCR but prostate still there with potential cancer recurrence in prostate.
I am ahead & need final data GS, decipher etc. Thanks so much for sharing & your team looks to have you in for many more years.

@kujhawk1978 No doubt that if your SRT would have been done like in current times rather than how they did it in 2016 your pelvic lymph nodes would have been radiated and maybe another recurrence would not have happened. But all for the guys with new cases similar to what your 4+4 case was like in 2014, rather than starting with an RP, would going straight to ADT, wide area pelvic radiation, and a high dose boost to the prostate wiped you clean enough to never have a recurrence? Of course, we can never know, but it sure seems to me like more men ought to try that approach when seeing a history like yours.