How soon should treatment start for aggressive cancer?
Hi everyone. I have Gleason 9 prostate cancer spread to pubic bone. My local urologist was unenthusiastic when I mentioned the possibility of pursuing proton therapy (presumably because they only offer conventional radiation treatment) and called it “experimental”. He seemed willing to start conventional treatment soon, but after I mentioned the proton idea (although I have not decided either way) apparently my next appointment won’t be scheduled with him for at least a month (and even that has yet to be scheduled after 3 days). Does this seem to be a reasonable time frame given my circumstances?
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In 7–10 years the research community will look back at the data and declare whether stage 4 prostate cancer became predominantly a chronic (rather than terminal) disease some time around 2024.
Unfortunately, for those of us in the middle of it, if/while it's happening, there's no way to know for sure because quantitative statistical data is backwards-looking and they need to do multiple studies and lots of peer review.
Fortunately, the qualitative signs are very promising: good personal stories, more treatment choice, new optimism from oncologists, etc. So it's very reasonable to hope.
Although you didn't ask me specifically, my story is similar so I will give you my sequencing.
G9 diagnosed in 2021 with RP in 10/21. PSMA PET 6 months later with single T8 met. Treated with SBRT. 4 months later after rising PSA, PET showed another met in pelvic node. I consulted MO at Johns Hopkins. Very experience MO who only treats prostate cancer.
Time line and therapy:
Oct-Dec 2022 triplet therapy with every 3 month Lupron injections, doceltaxel chemo x4 every 3 weeks and 3 months of Darolutamide.
Had whole pelvic radiation with boost to the single node and prostate bed March/April 2023 with a total of 37 treatments.
PSA became undetectable (from around 7) after 2nd chemo session) and has remained so.
Lupron was discontinued after one year-last 3 month injection was July 2023).
From discussions and literature I realize my shorter course Darolutamide (3 months) and fewer chemo treatments (4) are atypical. But my experienced MO who treats many patients with my same Stage disease has his reasons.
That's my experience.
Im 63 1 1/2 years ago had a psa of 1717 did the biopsy 10 all were 4+3 and 3+4 so Gleason score of 7 stage 4 has spread to lymph nodes, pelvis and lung. Been on lupron shot every 3 months and 2 80mg xtandi a day for a year. Psa now is .04 and had scan last week and oncologist said all tumors have shrank 50 to 75 percent. Stay active although some days are hard. Get a good oncologist and lots of prayers that a cure will come or a miracle. Good luck on your journey and prayers to you and all of us. 🙏🙏🙏
@stegner, I wanted to check in with you. Your question generated many replies that I hope were helpful to you. Did you decide to get a second opinion? How are you doing with treatment decision making?
The current research shows that starting treatment immediately and hitting the cancer hard up front provides the greatest outcome. I did get a second opinion from John's Hopkins. But, I had already started aggressive treatment.
1) I was immediately started on Casodex (30 days) and started Radiation to spin (10 cycles) and ribs (5 cycles).
2) 30 days later I was started on Lupron injections.
3) Within the same time frame I started taking Darolutamide and started Chemotherapy (10 cycles).
4) I started Zometa infusions monthly. Now I have been switched to Denosumb.
I was diagnosed with De novo stage 4 prostate cancer in the bone only. My PSA was between 25 and 32 when I was initially diagnosed July 27, 2022. My attitude was to carpet bomb the cancer. To kill as many micro-metastases as possible up front.
Every one is different and Prostate Cancer is treated a little different at stages 1 through 4. Regardless, waiting and watching gives the Prostate Cancer a chance to advance in your body and or mutate again. For me, not a chance I was going to give the Prostate Cancer a chance. I burned it (radiation), starved it (ADT & Darolutamide), and poisoned (Chemotherapy - Docetaxel) the hell out of it.