My 3 month appointment w my oncologist was yesterday. I was very apprehensive since my PSA has been doubling every 2-3 months for the past year. Still low at 1 but it was at .02 for a couple years. So I assumed that Zytiga had failed and things were about to go to the next phase.
Instead, the Doctor shows me the PSMA scan that I took last month. Amazing how the metastasis shows up like a light bulb rather than like a shade of gray on a bone scan. There is a bright spot on my spine but nothing else! I have had over 25 boney metastasis all over my torso for 4 years. The doctor says that they are dead !
So how happy should I be? Are they dead? Was my PSA too low for the other 25 to express? I am so happy😁 but deep down I know that this is too good to be true. 😩
Any thoughts?
Thanks!
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Fitzbruce1
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Was initially diagnosed over 3 years ago with PSA 1000+ and excruciating pain when urinating. At this time my bone scan findings: "extensive" vertebrae metastasis, no option for radiation therapy, proceed with systemic hormone and chemo therapies.
Fast forward in time, post PSMA PET scan, now diagnosed as "Oligometastatic" disease!
So, now target the two sites with radiation therapy (SBRT).
From "Extensive' to "Oligometastatic", PSMA PET scans rules!!!
I have followed your journey because you were always pushing the envelope! Looks like it worked! Now that you are oligo, are you considering removing or zapping your prostate?
I've already zapped the two spots, since Dana-Farber got the new PSMA PET Scan machine
The precision of PSMA targeted radiation beam to cancer spots. Seeing my PSA go down with this targeted radiation instead of hormone therapy was amazing!
Zytiga has been remarkably effective for you, and that is indeed worth celebrating. It shrinks mets that feed on androgens. But there will always the some cancer cells that are insensitive. That is called "castration resistance." If you are still getting new mets while taking Zytiga, you may want to move onto the next therapy, which would probably be docetaxel.
You do not have 25 or 26 metastases, you have thousands. They are too small to be seen even on the most sensitive PET scan. If the spine met is safe to be zapped, why not? But systemic therapy continues to be important.
TA- I guess I am probably still in LALA LAND after seeing my PSMA SCAN yesterday, but if I have the one met radiated, have you ever seen someone in my situation having the Mother Ship radiated or removed? I also know that chemo to kill the micro guys is in the cards. Thanks!
TA-I looked at the paper you recommended. One part states that there is a significant survival benefit in oligo men. So my question is whether I am oligo or poly? I was poly but now I am oligo. Next month I get my one met radiated. So if I do chemo this winter, is it crazy to think that I could have the prostate radiated next year?
I remember watching a doctor from John Hopkins stating that the prostate is putting out over a million cancer cells per day in patients like myself. So set me straight- don’t hold back- shoot w both pistols!
It doesn't work that way, I'm sorry. Once you're "poly", you're always poly. The reason is that the count of visible metastases is just a shorthand for progression. If you're "oligo" it indicates that progression hasn't been going on for a long time, so biologically most of your cancer is still at an immature stage where debulking and systemic therapy can still get rid of a lot of the cancer. As it progresses there are many thousands of sites, too small to be seen on any scan. Picking off a few just gives them more room and nutrients to grow. It will probably reduce your PSA for a while (PSA mostly comes from the larger tumors that have their own blood supply), but will do nothing to slow your cancer down.
TA - This is probably a stupid question, but how do medical professionals know that there are thousands of tiny metastases that can’t be seen on the most sophisticated imaging devices (e.g., following autopsy)?
When metastases are released by the prostate, it is not one cell at a time. Tumor cells have to undergo a genomic transition called EMT that enables them to stay alive while traveling elsewhere in the body. Each tumor has millions of cells. It is called "seed and soil." Cancer cell "seeds" alter the microenvironment of the tissue they land in and prepare the "soil" for further growth. If you want a metaphor, it is like the mushrooms that sprout under an oak tree. The real plant is the mycelium that extends everywhere throughout the soil and roots of the tree. The visible part, the mushroom, is a small fraction of the total fungus. Cancer eventually replaces healthy tissue in all the preferred niches.
TA,How does PC escape the prostate itself? Doesn’t blood carry it out from day 1? I know that it doesn't, but just wonder why. I’m only into this journey for 3 years so a bit of a novice. Even though just a novice, it’s tired me out already. 🥲
Yes, blood does carry it out, so does lymph, and it can travel along nerve sheaths. And it does occur from day 1. Fortunately, most of those cells can't live while traveling or in non-prostatic tissue. The cells have to change "phenotypes" - become very different to how they are in the prostate. The process is called "epithelial to mesenchymal transition (EMT)." As far as we know, Gleason 6 (3+3) cells cannot undergo EMT. Pattern 4 or 5 can, but even there, it can take quite a while until metastatic cells are generated.
It is like a big weight was taken off my shoulders. It is like seeing a sign at the pub that says ‘Free Beer’ and a bus load of college girl volley ball players just got off the bus ! Yes, that kind of happiness!
I have had 3 different metastasis radiated over the last 4 years. Next month will be my 4th. For awhile at least, I will have no visible Mets!! The PSMA SCAN has changed my life! 😬I have been on Lupron, Zytiga and Prednisone the entire time.
Just 3 weeks before my hospital obtained the PSMA technology, I had a bone scan that had my 25 plus Mets still showing. 3 weeks later the PSMA scan shows just one! So I would recommend trying to get the PSMA scan to really see what is there. It might change your whole life like it did mine!
Like TA said, there are thousands of micro metastasis floating around. So I might do chemo this winter but I am open for other avenues. But for right now, I am a happy camper! Plus I am going to Captain a 48’ power catamaran in the British Virgin Islands w my wife n 2 other couples during the first week of June! 😬
You might want to check out the Lu-PSMA-J591 treatment that I am getting right now in Australia. Got my 2nd of two doses at GenesisCare in Perth 15 minutes ago. Saline flush going in now. It is specifically for molecular targeting of micro metastases and circulation cancer cells after all visible oligomets have been treated with SBRT. Not SOC. You can read my previous post on it. You can consult Dr. Nat Lenzo to discuss with virtual appointment. Sail on, sailor.
I don’t see that you have received definitive primary treatment of your cancerous prostate and pelvic lymph nodes yet. Have you? It appears to me you should be racing to get into treatment with IMRT to prostate and whole pelvis. Possibly in combination with brachy-boost, LDR or HDR, from someone very skilled and experienced with it. And you need a prompt PSMA PET scan to more definitively file out cancer sites outside the pelvis, including that questionable lesion on the femur.
And your urologist has nothing to contribute at this juncture. It’s not his territory. It probably would have been better not to start the ADT and abiraterone until coinciding with the RT. But it’s probably okay.
Only after you have completed the definitive RT and adjuvant ADT for probably 18-24 months. Then you would probably drop that and see what your PSA is doing, along with repeat scans. If your PSA was not undetectable after definitive RT, then you might consider and consult on treating with Lu-J591 for possible remaining micro metastasis. With luck you could still be cured by then. I’m worried you get side tracked and not getting on with doing the main thing.
Mike-Last month I rode adventure motorcycles w 2 friends from western Colorado, to Utah to Arizona n back. We camped out every night in remote spots. Fun stuff especially when u live in flat Florida!
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