New To PCa Notes - Part 2 of 2

[JohnInTheMiddle]

The Beginning Of A Metastatic Prostate Cancer Journey - Part 2 of 2

22) A BIG QUESTION - at the start of your PCa journey, being overwhelmed is normal. So what could be a guideline for thinking about your situation? For me the answer is "is what I'm doing helping in any way to put off the development of castration resistance". (We could think of this as "phase 4" in the metastatic prostate cancer journey.) There are lots of things that oncologists will try after the development of castration resistance. But we like to put that development off as long as possible.

23) WHAT COMES LATER? These notes don't cover what comes later (what I'm calling "phase 4"), after the development of castration resistance. That would be after the failure of testosterone suppression, and after further rounds of different and even exotic drugs and therapies. There are multiple ways this might happen. Hopefully resistance is pushed off by today's powerful therapies.

24) SOME TERMS TO LEARN - here are some basic terms to learn at the beginning. There are more as you go along! 😂

"ADT Therapy" - in several varieties, this is the original backbone of prostate cancer therapy, going back to the middle of the last century. ADT suppresses testosterone. If you are metastatic, you will probably be on ADT forever. There may be debilitating side effects arising from the suppression of testosterone. Eventually, ADT will fail - at least in the world of metastatic prostate cancer. (For a long time, most men would only receive ADT therapy.)

"Testosterone" - is the hormone that drives your prostate cells, cancerous or not - and a lot of other important body processes such as strength and muscle mass. We're going to turn testosterone off! And then the prostate cancer cells will go to sleep and maybe some of them will die. (BTW, testosterone does not "feed" prostate cancer - a very common description of what big T does. Cancer cells devour energy like every other cell in the body - testosterone is instead a "signaling molecule" that tells the prostate cancer cells to "rev up" & do their job. Prostate cancer cells on their own, anywhere in the body, are just sitting there waiting, almost doing nothing except waving their little androgen receptors around and screaming "turn me on", over and over again.) The suppression of testosterone has a huge impact on the body. Not only do you lose testosterone with ADT, but because estrogen is made from testosterone, little bit of estrogen that men need is also suppressed. (The loss of estrogen is what is responsible for osteoporosis and cardiovascular risk - and hot flashes too!) Without testosterone the whole body is thrown out of whack! There are lots of unpleasant knock-on effects. And not just ED. As you get further into your journey you will be thinking about things like osteoporosis, the risk of bone fracture, sarcopenia and cardiovascular disease, driven by both your therapies and the cancer itself. There are simple things that may be of help, especially as mentioned, exercise.

"Castration" - horrible term - but when we reduce the testosterone this is the effect. When testosterone can be reduced by ADT then we say that the prostate cancer is "castration sensitive" or "hormone sensitive". We want to be sensitive as long as possible. As your doctor will perhaps already have explained to you, after a while the cancer figures out a way to thrive without depending upon testosterone. Once prostate cancer escapes the world of testosterone suppression then that is called castration or hormone "resistance". This is why the medical oncologist is so important - because surgery and radiation can only do so much. Prostate cancer never goes away but as long as testosterone is suppressed then it will be kind of asleep and not metastasizing. It's a biological problem more than a mechanical problem.

"Prostate Cancer Cells" - should be limited obviously to residing in the prostate, but somehow they got enthusiastic to go on a holiday. And then they go to places like lymph nodes or the bones of the hips and spine! And establish themselves. There are likely "billions" of them! And they are very enthusiastic to do their job. They now see their job as to grow! Yay Team! And the other thing they do of course is produce PSA.

"PSA" - this is what prostate cancer cells produce as part of their support of the reproductive process. Perhaps most of the escaped cancerous prostate cells still consider this an important job. That's why we can use PSA as evidence of prostate cancer cellular activity. Note that PSA is only an indirect measure of the activity of prostate cancer cells. Nevertheless everybody gets excited about PSA going up and down. And it when it starts to go up then we were worried that the prostate cancer cells in different parts of our body are starting to become active again. Remember, PSA is not the cancer itself and it is not a perfect measure.

"Other Therapies" - Testosterone-suppressing ADT is the backbone of prostate cancer therapy, as was mentioned above. Most people in North America today will also be offered additional therapies, depending on circumstances. Radiation and surgery are very important. They work by killing or cutting out a limited number of detectable growths or lesions. But PCa is a system-wide situation and needs system-wide therapies. Sometimes, as in my case, radiation and surgery would not have been helpful. So system-wide is the way to go. Chemo is one of the first things that people think of. Of particular importance are the several varieties of powerful drugs related to the body's hormone, and other systems. These drugs will hopefully find cancer cells everywhere, including at tiny sites that don't show up yet on scans. Selecting which drug therapies, and in what order and combination appropriate for you, is a major part of your engagement with the medical system.

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So maybe these suggestions for thinking about PCa and some terminology might be helpful. All these topics and more are covered in many fantastic posts here in MaleCare on HealthUnlocked. And of course in the literature offered by doctors and hospitals and support organizations.

P. S. - These notes were previously published as a reply to a new member of The Forum. Reading the original comments leads me to highlight that I have had no surgery or radiation. This is it seems a little unusual. As a result, I do not yet have any of the significant disabilities that so many people have, especially after prostatectomy.

Why no radiation or surgery? This choice was made for me by smart doctors - the reason was because for me it was too late. Because the metastasis had gone too far! The destruction of my body and quality of life, by radiation or surgery, would not extend my life span! (I'm grateful for my doctor's choices - at the time I didn't understand their reasoning.)

My focus now is on system-wide medical oncological interventions, i.e drugs (and things I can do like a low-carb diet and exercise etc.) Beware unnecessary therapies - and the perverse incentives for "the unnecessary".

SEE PART 1

healthunlocked.com/advanced...

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[Alloy7]

Thank you, John. I liked part one, but this one is really good! I appreciate you taking the time to put it together.

[Ian99]

Hi John. I’ve read both parts and must admit even 10 years in I found it clarified things. For sure I wish I had come across such info at the beginning when I knew so little.

One additional aspect comes to mind: the advent of generative AI and the growing importance of tools like chatGPT. Real MOs will still be needed but are not always available, and alternative views are important.

Many thanks for taking the time to pull this together.

[Survivor86]

John—Thank you so much for sharing the valuable insights you’ve gained on your journey and the clarity with which you’ve written these notes. For any man recently diagnosed with mestastatic prostate cancer or whose cancer has metastasized since initial diagnosis you’ve provided an easy-to-understand guide to draw upon in our own journeys. Nine years into mine, I gained some new understandings from your notes.

[pakb]

Thanks for getting this all down! Very helpful, especially for newly diagnosed. I would have loved this in the beginning. You highlighted and explained really well!

[anothercyclist]

Thanks, John. This is an excellent summary for everyone facing metastatic prostate cancer. I would only add, based on personal experience, that guys should be open to orchiectomy as a treatment.

After diagnosis I read every medical report on the subject I could find and that seemed like the simplest and most effective treatment. I am approaching the four year mark since that surgery and could not be more pleased with the result. The surgery was done on an outpatient basis and required me to take only 1 1/2 days off work. I have had no further treatments or meds since then. My PSA is creeping up very slowly (9 as of last month) so we have been able to delay the use of abiraterone. I am still active--30+ mile bike rides when weather permits--and am working full time.

Many oncologists will not even mention orchiectomy as an option. This is really unfortunate. Ignoring such an effective treatment is hard for me to understand.

[T911]

Thank you so much for the work you did putting your two posts together. Your excellent articulation and explanations will be a great resource for men both begining and living through their journey with PC. For those of us further along it's reinforcing to see a shared experience and lessons learned so very much like our own.

[dhccpa]

John, I appreciate all your posts. While I know much of that from 6 years of this experience, it never hurts to read a nice summarized version again, and it has to be incredibly helpful to newcomers to this.

Carry on!

[j-o-h-n]

Thanks for your efforts and the details.........however I did not read them.....cause I do my best work in the dark..(just ask the ladies)

Good Luck, Good Health and Good Humor.

j-o-h-n

[Icaneisawiwon75]

thanks John. I sit here reading of what you say while my girlfriend of 12 years is making Christmas cookies. But, your writing is so interesting I cannot watch her. Stay well! And thanks again.

[Icaneisawiwon75]

thank you john