I keep thinking I'm in the death lane, but then I get knocked out again.
In May, my oncologist told me he could guarantee 2 years of life only, and that my disease was "incurable."
Last week, he said that my labs look so good that it may be a sign of remission and that the radiation I got to my pelvic bone is "sometimes curative." He's doing an MRI in 3 months to find out.
Feeling like I need a reality check here. Thank you.
When cancer cells get to the bone, you have to ask yourself - how did it get there? The only way they can get from the prostate to bones, even nearby bones in the pelvis, is via the blood. Blood is pumped by the heart and circulates systemically. There are cancer cells everywhere. Prostate cancer cells prefer bone and lymph nodes as their preferred microenvironment. Cancer metastases grow by a process called "seed and soil." It prepares the tissue it lands in to be conducive to further growth. It can take years for the first "soil" to be prepared, and for the first metastases to appear on any type of imaging.
While radiation can kill cancer cells where it is aimed (called "local control"), it can't kill cancer cells where it is not aimed. and cancer cells are systemic, not just where you can see them. You need systemic treatment for a systemic disease. But there will always be cancer cells that have evolved to be resistant to all systemic treatments that currently exist.
Got it. Thank you, TA. That makes perfect sense. Reality checked. I can see these developments as part of the bigger picture of "buying more time."
Progression with prostate cancer can be very slow, at least at first. When there are metastases, the goal is maintenance, just as it is for HIV.
Hi Allen. I’m 9 years out from my prostatectomy, and 4 years out from salvage radiation. My PSA is steadily on the rise and now at 1.38. My oncologist’s plan is to wait until my PSA reaches 2.0, then I get another PSMA scan… I’ve already had 2 PSMA scans that revealed no cancer.
My question- I’m in no kind of therapy and on no medications for prostate cancer. From all I’ve read, it seems there are multiple options like chemo, immunotherapy, hormone therapy, and maybe others. However, from what I can tell, none of these options are available to me unless and until I do hormone therapy and it fails. Am I understanding correctly that no matter what, I cannot do chemo or immunotherapy until I do hormone therapy and it fails? I ask because I once took a single shot to begin the hormone therapy process, but I could not tolerate it. Does this mean I’ll never get to chemo or immunotherapy until I submit to hormone therapy? Meanwhile, I go year after year with no treatment and wondering if it’s a huge mistake to not just start hormone therapy. Feeling perplexed…
What is your PSA doubling time?
mskcc.org/nomograms/prostat...
I’m not sure how to calculate doubling time…
I had a prostatectomy in July 2015. My PSA immediately following was .04 and it continued to rise slowly until I decided to have salvage radiation in 11/2020. My PSA at this point was .42. PSA values from that point on were:
01/2021 .31, 04/2021 .22, 07/2021 .16, 10/2021 .19, 01/2022 .22, 04/2022 .26, 08/2022 .34, 10/2022 .36, 01/2023, .42, 04/2023 .50, 08/2023 .68, 11/2023 .68, 02/2024 1.08, and 07/2024 1.33.
If PSA values prior to 11/2020 are important, please let me know. Any feedback is greatly appreciated! Thanks, Allen.
I'd enter all values since your testosterone was normal. I think that calculator weights more recent more heavily. I'd guess around 8 months.
I had 1 hormone shot in 2016 that reduced my PSA to 0. I didn’t tolerate this treatment very well, and when I discontinued it, my PSA again began to rise. Then the radiation treatment reduced it again, before it started to rise, again. So, my PSA has gone up and down due to these treatments. Won’t that skew the calculated result? That’s why I’m confused about getting to a valid number.
Just enter values since your last treatment.
If you can't tolerate ADT of any kind, there is little hope.
In short, the end is just a matter of time!
Hi Had your cancer already metastasis out of your prostate gland, or did you have a radical prostectamy? I'm just beginning my journey, aged 63 with prostate Cancer
Hi, I had a radical prostatectomy in 2021. At the time, the cancer did not appear to have breached the prostate, but it was Gleason 9 of 10, so it had to come out. The surgeon said a radical prostatectomy would be the best way to get it out entirely. He expected my PSA to drop to 0 very soon after the surgery.
Instead, it went down to barely detectable levels, but not 0. Then it started doubling, still at very low rates of <.1, but moving away from zero rather than toward it. I was going to have a series of many radiation blasts over time to the general area, but then they found a metastasis on my pelvic bone.
So they decided to do stronger blasts all at once, directly to the spot on the bone rather than the whole area. I went on Zytiga and some other drugs (with infusions every 3 months). I also eat almost everything with soy in it. I had no idea that tofu, for example, can actually be quite good if cooked right. I had also never used miso in my cooking before—it's great, and cheap.
Now my PSA is barely detectable (and my once giant balls are now also barely detectable!) 
Even if the spot on my pelvic bone is "cured," I will need to have my T suppressed for the foreseeable future. That could be a longish future, or maybe not. I don't believe there are really any guarantees beyond a few years. And I will now start treatment for Barrett's esophagus, which could also develop into cancer, so I am preparing myself emotionally and practically for a variety of outcomes.
63 is a great age! I am trying not to let cancer spoil it. I've been experiencing cancer treatment since 2020 now, so my main focus is on having some kind of life outside of the world of disease and medicine. I decided to retire with a very small fixed income and have not regretted that for a single moment so far. I am quite busy doing whatever the hell I want for as much of each day as possible. Best wishes to you.
I really feel for you. So brave!!. I take my hat off to you for your positivity!. I do hope thd treatment gives you a long and content retirement. I'm hoping to finish work next year. My gleason score before surgery was 4+3, and surgeon said he was very sure the cancer was contained in the prostate. I'm 8 months since surgery. 2 psa test so far, have shown to be undetectable. Like you, I'm trying to enjoy life and not let this terrible disease beat me. Take good care. Neil.
Change of Life…Good-bye or Good Riddance to Sex?
tired of it...
Recently Diagnosed. Overwhelmed. 
Troubled state of mind....
