Diagnosed today w/ PCa. Seeking feedback w/ treatment I think I want

@jeffmarc
The same goes for ADT length now - recommendations are drastically changing but doctors are reluctant to follow new findings and understandably so.

And yes - I also cringe when I see my post pulled out as reference in "google search", especially because I am very private person and what I say here I wish to stay here but alas, we all forget that privacy does not exist in this world any more.

Also, it is scary that people do not understand how AI works and that if something (even wrong) is repeated enough times that "something" will be served as an answer by AI and on top of that if AI "does not know the answer" it will make up one. If you ask AI the same thing enough times it will start "guessing" what you wish to hear and serve you that answer.

Sorry for digressing - bottom line, there are so many possible PC treatments available and now with constant changes in recommendations it is becoming really confusing and overwhelming for new patients : (((. Luckily most of the treatments WORK ! Also, all treatments have side effects and mostly are actually the same - they just come in different order and in a different time frame.

In the end it all comes to personal choice and it will be very subjective choice, but it is OK since the results and side effects are absolutely comparable. We all try to make the "best choice" but there is no such thing because success depends of so many other parameters than just of the type of a treatment.

I can only speak fr myself here. With Gleason 7's in 2013 (age 65), I chose Cyberknife/SBRT for my PC over surgery mostly. because I did not want to risk ED. Eight years later I had some recurrence with Gleason 8's, and went for a second round of Cyberknife in 2021. I"m still here 13 years after initial diagnosis. Never suffered any ED. Side effects: I had a radiation flareup in 2020, typically only occurs with high dose radiation treatments. Feels like the worst UTI you've ever had, can last for a few months, never came back. I currently live with stress incontinence, but that is only indirectly tied to Cyberknife. All radiation causes scarring in some sensitive areas, and as a result I had a somewhat weak stream in late 2021. Then my local urologist botched a routine TUIP/TURP procedure which was meant to solve that problem, but irreversibly damaged my bladder neck in the process. So....been incontinent the last 4 years, but never let than slow me down. I continue to travel the world. Now it looks like I'll be receiving an artificial urinary sphincter this fall, no more living with pads. So, bottom line: I've made it 13 years so far and am doing fine.

You're doing well to be asking questions. At some point you just need to make your decision and not look back.

PS to my last comment.....I was only on ADT for a few months prior to my second Cyberknife. Hated it. Doesn't bother some people, other people it does. Personally I'd never do it again. It's a "quality of life" versus longevity thing for me, but that's a personal decision for every man with PC to make.

There is a new train of thought these days called "intermittent ADT" versus full time ADT. In a nutshell, you're on it for awhile until numbers drop, then off and monitor. Then on again. only if necessary, rinse and repeat. I'd ask about that.

@lagnafinc
Normally, when somebody has SBRT radiation their prostate is pretty much decimated only about 40% left and it’s a block of tissue not a prostate. Did they only partially treat the prostate?

You say you had a reoccurrence and it was a Gleason eight, Were they able to do a biopsy of your prostate that had been radiated and found that? Did they biopsy some other tissue to find out the Gleason eight number?

When they did SBRT, a second time was that to a metastasis out of the prostate area? Normally, you get the maximum radiation dose when they first radiate the prostate so it cannot be radiated again.

It could be you were always a Gleason eight. If you don’t have a prostatectomy, they have no idea what your prostate really contained. In my case, they told me I was a 3+4, but after surgery they found out I was a 4+3. Other people have found out they were a 4+5 after surgery.

I also had a Gleason seven, in 2010 at 62. I’m still around after four reoccurrences. Mine comes back, because I’ve got a genetic problem. Have you ever had an hereditary, genetic test? That might show whether you have a genetic problem that’s causing your cancer To come back. Are there other cancers in your family, that could be a leading indicator.

- Since I'm not the physicist who devised my initial treatment plan, I can't tell you how much of the prostate they radiated.
- Yes, seven years after first Cyberknife they did a 2nd biopsy of my 2013-radiated prostate which determined Gleason 8's-9's.
- No, the 2nd time was not for metastasis, it was for biochemical recurrence within the prostate.
- During my first round of CK I was given 50Gy dosage ....8 years later I was given a reduced 38Gy dosage. Not sure who told you it can't be radiated again, since it obviously can... at least one time.
- My CK was done by Dr. Robert Meier at Swedish Cherry Hill in Seattle. Bob Meier and his physicist were both part of the team at Stanford that developed CK in the late 1990's and brought it to full FDA approval in 2001.
- However, they won't do it a third time should a need arise. If that happens, it's on to chemo of some sort.
- Never had a genetic test, and don't plan to. Too busy living my life to worry about it.
- Yes, my mother had colon cancer, and as a full-time smoked died of lung cancer.
- Personally I passed on RP surgery since at the time it seemed to be a guaranteed form of ED, but that's just a personal choice we all have to make.

Any more questions?

@lagnafinc
Normal SBRT dose is 74Gy to 80Gy during prostate cancer radiation to the prostate. That is a lifetime radiation amount for that spot. The fact that you only got 50Gy explains why you had BCR. They didn’t give you enough The first time so it came back. By the way, BCR means you have a metastasis in your prostate tissue. That’s what produces the PSA rise, a metastasis.

You now have the maximum dose, in that area, so they can’t radiate it again.

A genetic test only requires saliva or blood, Quite simple, You did get prostate cancer pretty young that’s why it would make sense. If you have children, and you have a genetic problem, you could’ve passed it on them and you have no way of knowing And they could have cancer as a result. Same thing goes for any aunts and uncles as well as nieces and nephews in that family line. Genetic testing is free. You could have it done at the same time as your next PSA test.

@jeffmarc I am sure the SBRT Gys quoted are raw, not BED (Biologically Equivalent Dose). Fractions with higher Gys such as SBRT have higher BEDs. The typical SBRT dose to the prostate is now 36-40 Gys (7.2 to 8 Gys per fraction). Gys = BED at 2 Gys fraction and IMRT at that fraction is typically 37-40 sessions for 74-80 Gys. Hypofractionated IMRT usually has BED between 74-80 Gys but with lower raw Gys such as 20x3 Gys for 60 Gys raw. Two SBRT treatments is a much higher BED. However, since SBRT is ablative, the Gys delivered to surrounding tissue is more important than what is delivered to prostate tissue it is intended to kill. There is still Cyro ablation if there is another recurrence that is confined to the prostate.

@jeffmarc
I have no natural children, and only one older sister who has lived a full life (84) and is not likely to acquire prostate cancer anytime soon. :>) So genetic testing is kind of a pointless exercise in my case, free or not.
Since my CK treatments are long over, and were done by one of the best in the business, I'm good and currently sitting on a declining PSA of only 1.4 currently along with a clear PSMA scan, with a supporting MRI w/o contrast, showing ZERO metastases. Not sure I could ask for any better.

That being said, I began my CK journey in 2013 with a PSA of 14. Seven years later in 2020 my PSA was only 1.5, and my "best in the biz" doctor was nevertheless suspicious....so with a PSA of only 1.5 he requested another biopsy. Local urologist literally laughed at the request with a PSA of only 1.5..he stopped laughing when results came back from Mayo with Gleason 8-9, aggressive cancer. So yeah, I may currently have a PSA of only 1.4....but I always remember that 1.5 in 2020. Meanwhile, dying of PC is the last thing on my mind. I've been living life to its fullest since my initial diagnosis in 2013, and see no reason to do anything any differently.

@jeffmarc Just a comment on "they didn't give you enough." In 2013 nobody was handing out 74Gy of radiation. Why? The machines were not accurate enough with tight enough margins to avoid burning up surrounding tissue. In 2013 for me it was was either 10 weeks with older, lessp-accurate non-SBRT technologies, brachytherapy, or the relatively unheard of high-dosage Cyberknife. New technology like proton therapy e.g. was only available in clinical trials, Trubeam was relatively new , and here in Idaho back then they were not doing high dosage Trubeam treatments for PC, only 10-[week low-dosage. Far as I know, they didn't even acquire their first Trubeam here in Idaho until 2015.

If I was diagnosed today, sure, there is a much broader range of technologies available which are every bit as accurate (sub-millimeter) as Cyberknife; and yes, today if I chose I could go through 28 days/fractions of SBRT and perhaps receive a total of 74GY @ roughly 2.6Gy per fraction. Would that have been better than what many of us did thirteen years ago? Since we cannot go back, I guess I"ll never know. But IMO 50Gy of Cyberknife over 5 days was as good as it got in 2013.

And by the way, biochemical recurrence does not mean a metastasis WITHIN the prostate tissue. "Metastasis" in any number of medical dictionaries is defined as the spread of malignant or cancer cells FROM an original, primary site (in this case the prostate) to OTHER parts of the body, with such movement typically occurring via the bloodstream or the lymphatic network. A simple example of that for PC would be a metastasis in the adjoining seminal vesicles from where bad things typically happen going forward.