Joining the Reluctant Brotherhood

Don t delay. I had psa 1.4 then 2 yrs later 12 then 18 or 19. Gleason 8 and 9grade 5. By surgery a year in I had seminal vesicle invasion and neurovascular bundle involvement and 6 hot lymph nodes and dirty margins. My point is early surgery might spare nerves and preserve urinary and possibly sexual functions. Your doubling time and other numbers suggest aggressive disease, I would go directly to a center of excellence. My trip led to mayo Rochester. My advice skip the stops along the way and go there asap.

Jay, first, you’ve come to a good place. There’s lots of good experiences here for you to learn from. Still, know that each of our journeys is personal and varies a bit based on particulars.

Angst is to be expected. Lean into it and use it to keep you moving quickly but without hurry. Get to the best facility you can find and listen to all the experts while you take charge of your own care. Ask LOTS of questions.

There are good things happening in the PCa space and you can benefit from them. Be positive.

I parted ways with my prostate a year ago and, so far, only good news has followed. Each follow-up test is cause for concern for me but I’m not letting it define me or keep me from enjoying my blessed life. I wish the same for you.

@jcbagley You might, as you were thinking, do a telehealth zoom call at a center of excellence. It will give you options of moving things along a bit faster.

You also might want to have your biopsy material sent in for a Decipher test. This shows a level of aggressiveness and an indication of modes of treatment. Doctors DO change their entire treatment choice based on this test. https://decipherbio.com/

I had radiation that finished in February 14 of 2023 starting with a PSA of 11.2. I am now at .8. I had 5 hypo fractional treatments with the Mridian Linac radiation machine. It has a built in MRI which makes a huge difference in how much healthy tissue is exposed (Elekta is another MRI machine: https://www.elekta.com/products/radiation-therapy/unity/#:~:text=Elekta%20Unity%20combines%20accurate%2C%20diagnostic,to%20confidently%20escalate%20daily%20dose).

The standard of care, generally with radiation, is to treat the entire prostate plus a margin around the prostate. That margin for the Mridian was 2 mm for me. Other radiation machines are 3-5 mm. Margins and healthy tissue exposure affects side effects. The Mirage study showed the difference was significant between built in MRI and Non built in MRI radiation machines, that used fused images, and the resulting toxicity side effects. Here is an article about those results and the recent updated study from UCLA's Dr. Kishan. https://www.uclahealth.org/news/release/mri-guided-radiation-therapy-reduces-long-term-side-effects. The follow up study and found that long term side effects were also impacted in a good way.

Private message me and we can arrange a phone call if you want to talk about the subtleties of my experience.

My 2 cents:
Be your own best advocate. If you don't like a delay, then nicely insist on a sooner one. I ran into this as well. I kept running into the "it's a slow-growing cancer" mentality. Some in the medical community concentrate on the "slow" in that statement. We who have cancer concentrate on the "growing" in that statement. Be gentle but firm in your journey.

BE POSITIVE! I know we worry before getting all of the answers (yes, I did too) but a positive attitude is one of the greatest allies you have in this battle. YOU WILL BEAT THIS!

Get information about your options, and don't be afraid to make the decision you feel is right for you. If you don't like the attitude/vibe/personality/bedside manner of a doctor, find another. Don't be afraid to get a 2nd opinion. This is your life and you need the ability to make informed decisions about your care.

Hello Jay, Maybe you're considering traveling to a Center of Excellence.
If so, some of the other participants in this discussion may have some tips and guidance for you. I live in the Detroit Metro area so I have multiple CoE's to choose among.
Good luck and may your path to a positive approach be speedy.
God Speed my brother!

Jay, Your thinking seems very clear and logical to me - in spite of your frazzled nerves. You are pursuing this the right way. I do not know your occupational/financial status, but if you can, get the HELL outta Dodge!!
Where and how you are treated FIRST can make all the difference between success or a life of misery. A center of excellence or a large university hospital in the nearest metro area is a good place to start looking.
If you need to fly and spend a few days there DO IT. Spend the $$ on saving your life and don’t worry about anything else right now. Don’t screw around with small town doctors/hospitals who don’t treat thousands of cases.
Your PSA indicates you need expert care, genetic testing and an array of options presented in a format you can understand. Great oncology teams do this….
Best

Hello Jay,

I unfortunately bid you welcome to this group, where you will find much good advice from others who have tried this path before you.

First, I currently live in rural Tennessee and have for about 8 years. Prior to that, for about 15 years I lived off the grid in Colorado. Eastern slope, pretty much straight west into the mountains from Fort Collins, so I am very curious as to where you live in Colorado.

I am 81 years old and am coming to the end of this journey, so I can give you a lot of first hand experience.

My prostate cancer hit very suddenly and completely all at once around five years ago. My initial biopsy came back a ten and the prostate cancer had already gone from nothingness to having fully metastasized throughout my bones and lymph nodes.. one day I was running around doing farm chores on our 30 acres and the next thing I knew I was bedridden with cancer

Hello Jay,

I unfortunately bid you welcome to this group, where you will find much good advice from others who have tried this path before you.

First, I currently live in rural Tennessee and have for about 8 years. Prior to that, for about 15 years I lived off the grid in Colorado. Eastern slope, pretty much straight west into the mountains from Fort Collins, so I am very curious as to where you live in Colorado.

I am 81 years old and am coming to the end of this journey, so I can give you a lot of first hand experience.

My prostate cancer hit very suddenly and completely all at once around five years ago. My initial biopsy came back a ten and the prostate cancer had already gone from nothingness to having fully metastasized throughout my bones and lymph nodes.. one day I was running around doing farm chores on our 30 acres and the next thing I knew I was bedridden with cancer .

Website just shut me off in the middle. I'm back now.

One thing I have learned is to not get freaked out by my PSA readings. My experience is they may be indicative, but they are the end all and be all holy Grail of measurements we are led to believe in the beginning. I'm not saying ignore them. I'm just saying take with a grain of salt and in context with everything else you have going.

I always get my PSA and testosterone levels measured with every blood test, which is every time I see my oncologist. He is good, but sometimes PSA and testosterone test gets lost in the shuffle. I always ask the person drawing the blood what is on their list of tests that they are drawing blood for. If they don't have PSA and testosterone on their list I ask them to make sure to draw enough so they can add it. Then, when I get in to see the doctor I inform him of the situation, he adds those two tests to his request list and everything is good.

Where to start? Maybe we should start by you telling me what your oncologist is proposing. I have probably had everything. I am literally at the end of the road, having exhausted all of the official FDA approved treatments. We are now at the point where I am the guinea pig for a 100% completely non FDA approved off the wall experimental combination of two new completely unproven drugs my oncologist thinks might work. We'll try it and find out.

Meantime, tell me what your oncologist is proposing and that will guide me in sharing my 5 years of experience on this path.

Let me tell you buck up. Have faith. You are just at the beginning. Much help and support is available to you through this website.

Robert

Hi Jay. Sorry to welcome you to the brotherhood. You have one of the best cancer centers in the county in the South Denver area. Rocky Mountain Cancer Centers served me well for over 6 years. I saw Dr. Robert Jotte who kept my stage 4 cancer in check during that time. I have also been to the Mayo Clinic in Jacksonville, FL, and now Banner MD Anderson in Gilbert, AZ.

5ra