Seeking advice on treatment options

I agree about those ellipses. It's, better to review the source material. When was the study done? How many cases? Specifics of the treatment e.g. where and by whom was surgery done? Charactaristics of the population e.g. Gleason scores etc.?

When I probed more deeply, I decided to ignore the comparison ellipses. It looks authoritative, but as spino says, it is biased IMO.

You are right. Reading too much into these trials may not be useful, especially as layman and only the incomplete version they put on the net. I would not go so far as to say they are biased, but they do have a certain aim. To get the financing, the project must have some support. It cannot be open ended. The there are all kinds of fine prints. Some studies provide information on sub-groups, ie those who reach PSA< 0.5, 0.2.0.1 etc, as well as the time it takes to nadir ( TTN). Of course most of us do not have the time or the training to read these reports other than the highlights. So we might be missing something, which can be counter productive.
Dont mind me. I am another layman trying to make some sense of the whole thing.

What is Tulsa? Did Mayo suggest proton radiation treatment? I see a lot of patients having the proton radiation treatments.

I am still a little confused the more and more I read. I was first told the radiation does not kill the cancer it damages the cells and thus unlike regular cells they cannot reproduce so the cancer cell dies. Then I read some saying destroying cancer cells.

One thing I did understand was my R/O saying if he did not treat entire prostrate (which he did) he, the MRI, the biopsies could have missed an area with cancer in it and thus cancer cells still there that could still grow.

Not sure if high dose is different that dose I received (30 rounds) and treats cancer cells different. But I would be worried if only treated what a biopsy found worry that an area that had it was missed.

Hello, it sounds like you have been pretty thorough in your research. After monitoring my rising PSA levels, having a subsequent Prostate MRI followed by a Prostate Biopsy my Prostate Cancer had already surpassed “Active Surveillance and Watchful Waiting!” I needed to treat my cancer within 4-6 weeks through surgery or radiation. They both have the same efficacy and treatment outcomes. As a result, there is no one best or better treatment option. However, after you’ve completed enough research and consults with a surgeon and radiologist it will become more clear as to which option would be the best TRT choice for you personally.
For a number of reasons, I chose the surgical option.
Primarily because if my cancer returns within the next 5 years or so I can pursue the radiation option at that time. Conversely, if you start with the radiation option, you can’t utilize the surgical option if your cancer returns.
I also require “TRT,” TESTOSTERONE REPLACEMENT THERAPY to treat my HYPOGONADISM. Radiation normally utilizes “ADT,” ANDROGEN DEPRAVATION THERAPY through LUPRON injections or something similar. Basically, it’s Medical Castration. This is in direct conflict to the purpose and protocol of my “TRT!” Those were a few considerations I had to consider in making my treatment decision. In addition to some other important factors, it became obvious to me that the surgical route was the best personal choice for me.
When you have completed enough research you will know which choice will best suit you and your risk attitudes, personal risk attitudes and needs.
Best wishes and good luck.
GODSPEED

Glad to see you doing the in-depth research and becoming educated on the subject. I'm 70 and have most of this behind me (except for another 3 months of ADT). I was grade 3, localized, all finding suggested it was all on the right side. I was initially sure I wanted to do TulsaPro, which is available at Mayo Jax where I was treated, and the out of pocket cost wasn't a problem for me. I got multiple second opinions from other leading prostate cancer centers as well. I settled on SBRT and added 6 months or Orgovyx as my genomic testing came back high risk.
That said, everyone and every case is unique. You didn't mention a PSMA Pet Scan to confirm degree of metastasis or a genomic test to assess how aggressive your PCa may be. Highly suggest those two tests in particular. Best regards!

I too was on TRT since 2008 but my PSA did not rise in over 5 years. It varied from 2.9 to 2.2. The only reason I caught it was because of my female endocrinologist did a full PSA test last year. She did the normal PSA but added the PSA FREE and PSA FREE %. My % was low which made me investigate further at Mayo Phoenix. Went for the MRI followed by the MRI Fusion Guided Transperineally biopsy when the MRI showed a 7 mm lesion. Had 30 cores taken due to the size of my 120-gram prostate. I had four positive cores out of 30. Two were 4-and two were 3-4 and the rest of the prostate was clean and normal. My PSMA Pet Scan also showed it confined to that one area. At 73 I did not want surgery as too many stories of incontinence for me to be comfortable with that option at my age. My radiation oncologist wanted me to do a 6 month Lupron shot and 28 proton treatments. I told him with my TRT I did not need it because my endocrinologist and I had already experimented with no testosterone, and I went castrate without a shot since I had been taking it for 15 years. I experimented once on my own and stopped the Androgel 2 days before my blood work and again I was castrate. He didn't believe me and had me tested after two week and I was at 12 ng/dl which is lower than the Lupron shot promises. I have been at 12 for 8 months and just started back on the gel today. I have a Dr. at Mayo who will watch everything. Instead of the 28 proton treatments I did the five SRBT treatments and my PSA after three months was less than .1 or as they said undetectable. Sure felt like crap without the Testosterone.

Hello,
I don’t know if I went into very much about or shared much of my past and present medical history. I was extremely debilitated from CFS/ME, FIBROMYALGIA and CHIARI MALFORMATION. I am still very debilitated from these disease states but have improved enough to have achieved some kind of measurable lifestyle I can describe and enjoy as a life worth living! I was pretty much bedridden and home confined for almost 23 years out of the past 32. As a result, even before I was being treated for my HYPOGONADISM as of 2011, I was already very weak and unable to do or accomplish very much physically with the debilitating side effects of POST EXERTION MALAISE and ORTHOSTATIC INTOLERANCE etc, along with experiencing measurable cognitive disfunction. As a result, when I started my “TRT,” it also improved my overall physical and cognitive wellbeing by about 30%. to 35%. This is an enormous benefit to me and my ability to live and enjoy my life as much as possible given all of my past and present health challenges. While on “TRT,” I have a somewhat functional life, albeit extremely limited when compared to the normal lifestyle and well-being enjoyed by most so called normal individuals. So for me, continuing my “TRT,” literally allows me to live a lifestyle I would not otherwise be able to have or enjoy. It’s similar to a Diabetic’s dependance on Insulin. Although I wouldn’t literally die like a diabetic would if they no longer had access to their insulin it would create an extremely catastrophic existence for me.. I also deal with excessive amounts of pain created by the disease states I have to manage. Additionally, without my pain management therapy it would be impossible for me to endure the amount of daily pain I must manage to survive. In totality, I need the combination of all my current treatment protocols because there are no cures for CFS/ME or FIBROMYALGIA. I did have a combination of neck, head and brain surgery back in 2001 to help heal and correct my CHIARI MALFORMATION. However, that specific congenital disease has caused a certain amount of continuing side effects that the surgery could not repair or restore me back to the previous and normal functioning of my overall cognitive and neurologically related capacities. “CM” is the result of your cranium failing to grow and develop completely to its normal size as you develop from a toddler to and through your adolescence stage.
Additionally, your Spinal Canal does not develop fully which in combination with your underdeveloped and smaller than normal cranium reduces the normal amount of functioning space and area required to allow the Cerebrospinal Fluid to flow normally and adequately enough to your brain. Additionally, the Cerebellum begins to herniate and gets forced downwards through your Spinal
Canal. Your Cerebellum Tonsils also start to twist and wrap around your Cerebellum instead of straddling it in parallel on either side. This specific combination of physical abnormalities by themselves causes a severe neurological and cognitive disorder. In combination with my already debilitating cases of CFS/ME and FIBROMYALGIA etc, it was analogous to the creation of the “PERFECT STORM!”
I was literally and completely overwhelmed by the magnitude of everything manifesting simultaneously.
It all started with some viral type symptoms which first struck me on December 30th, 1990. Prior to that, I was a very fit, athletic and strong man enjoying the fruits of my labor and had built a very successful insurance career, was happily married and living a wonderful, enjoyable life and overall lifestyle.
Although I certainly did not want to be diagnosed with Prostate Cancer or any other kind of cancer,
which I was diagnosed with in August of 2022. At least I knew there were successful treatments and protocols which could manage the cancer and achieve a state of remission. Although if left untreated, the cancer I contracted could actually kill me. In many respects, it’s been much easier to manage my PC than my other overwhelming disease states. The bottom line for me is about my existence here on earth and the overall “Quality of Life!” available to me. I’ve already survived and have barely done so at too many stages experiencing far too many tortuous years without having that minimum quality of life. As a result, there was absolutely no possibility that I would choose anything that could or would possibly recreate anything less then a viable option moving forward. Hence, the radiation treatments in combination with the Medical Castration created through the utilization of LUPRON and other similar medications was never going to be a viable option for me. In addition to some other important considerations, the “RALP” became the obvious choice for me. My other debilitating disease states made it impossible for me to even travel to the hospital to attend the required radiation appointments etc.
Given the fact that I was going to experience a certain amount of urinary incontinence and Erectile Dysfunction whether I chose the surgical or radiation protocols I chose the surgery. Although you experience the Incontinence and ED immediately through the Radical Prostatectomy procedures etc. I also preferred the available option of doing the surgery first which gives me the option of utilizing the radiation options at a later date in time in case my cancer was ever going to reappear within the first 5 years or longer following my surgery. You are not afforded the surgery option if you choose the radiation treatments initially!
As I had previously stated, there is NO one best or better choice of treatment to manage PC. However, after completing a sufficient amount of research in addition to different physician consultations, each patient will ultimately choose the best treatment protocol for themselves.
The one that best meets their overall needs, desires, risk attitudes and assessments.
I am fortunate to be in remission with no detectable cancer and my Total PSA is and remains undetectable at < 0.014 since the day after my surgery on 10/26/22 and has remained the same as of today, 10/2/23.
I returned to my “TRT” on 3/27/23. It was similar to turning the light switch back on! I was barely getting by each day during the 5 months I had discontinued my “TRT” which started one month prior to my surgery and continued without it for the additional 4 months following my procedure!
Within several days following my first “T”injection I was already feeling substantially better. So………..by all measurement data, continuing my “TRT” is an absolute must for me.
I wish you the very best with your continued journey
and recovery.
GODSPEED

Sorry if this has been said. I just got back from meeting with a very well-respected urologist and learned something I have to share.

I am 62, a bit older that you but similar prognosis.

Long story short I'd mentioned how surgery the side effects are short term, where others manifest themselves long term.

When I said this the Dr 'lit up' and went into detail about why - basically the other treatments do so much damage to the surrounding area that even though someone may be 70, the tissue/organs are like 90.

Basically, if you are young & have a long life ahead, surveillance or nerve sparing RARP is the way to go. (I got the impression he favors surveillance but this maybe in my case)

Another interesting thing, TULSA, HIFU does not get rid of the cancer & many places will sell you on it even thought you are not a good candidate (like me) These techniques cannot reliably kill all of the cells. (makes sense). It is good, just not 'one & done' like I'd hope.

So pls keep this in mind as you're contemplating your journey.

Great advice here. Also seek out consultation by video with the experts at centers of excellence. I’m a big fan of Dr. Kishan at Ucla. He’s got quite a few YouTube videos and multiple interviews you can Google. Don’t rush it. Take advantage of the guys on this forum, as well. Best of luck.

Is Dr Kushan at Westwood UCLA. I see Dr. Robert Reiter there but he is a very busy department head and he might be too busy for my case that is now on the back burner, but it probably will not stay there for that long. I may need someone that is a bit less busy.