RP 2 years and four months ago. PSA went from <.02 to currently .27, Testosterone at about 600+
Since surgery, there has been no intervention. It looks like it is time to take action. Does the group have any suggestions?
PSA Rising: RP 2 years and four months... - Prostate Cancer N...
PSA Rising
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Gulfrider
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The group will tell you, almost unanimously, salvage RT plus 6 months ADT. I am the odd one out and elected to do differently. Full disclosure here:
healthunlocked.com/prostate...
We thought mine was confined to prostate bed, and I was to "be easy". Nope, at PSA 0.11 and 'just' G 4+3 my salvage RT failed to get it all, mine was already out of the bed.
Since we don't know the exact mechanism by which cancerous cells are born, I find the accepted model as too simplistic. After my perspective, I see it as a natural decay mechanism like rust eating metals. Iron, steel or even cast iron will rust no matter what, but in a steel structure there are predictable weak spots where rust will appear first (read prostate). Removing this rust, by say sand blasting, (read RP) doesn't inhibit rust attacking the remaining structure (read metastases). There are anti-rust measures to implement, that will make it difficult for rust to proliferate, but no magic recepies to turn steel into inox (read cures).
As always, distinguish any "magic" cures from "magic" cures that work. Too many of the former.
Yes Salvage Radiation with 6 months of ADT...
I would suggest finding a great facility with a well experienced RO who has treated thousands. Also for an ADT, I recommend six months of Orgovyx .
how do we thank all the men the RO who has treated thousands first practiced on?
...by becoming another learning opportunity for the RO.
After reviewing your bio and posts curious as to why are you hesitating to act? IMO the big decision is whether you want to begin ADT path or another path. Nine years since my RP and I have done all I can to defer ADT/chemo and hopefully thereby possibly CR for as long as possible.
You deferred ADT/Chemo.. can you share your journey? What have you done.
Supplementing my bio, since my diagnosis 10 years ago at otherwise very healthy, fit and active 57, I knew ADT would likely take a major toll on my lifestyle, my happiness. This is not to say I am against it, and will not rely on it for longevity if/when my cancer makes it to vital organs/bone, but yes, my intent since diagnosis has been to remove tumor burden. Similar to my approach with melanoma; just had my second surgical removal yesterday.
Although I strived to not have RP, consultations based on imaging steered me to surgery as my best chance to remove tumor burden with minimal side effects. For the nay-sayers, I even traveled to UK for consultations on Cyberknide and HIFU; neither were established in US in 2015. What surprised me was that although I was a cash paying private citizen, those doc’s recommend surgery, foregoing income.
My RP PSA nadir was 0.050 – we knew cancer remained. Of course, my US medical team was right there with me recommending salvage RT with ADT. I took eleven months pondering my choices, testing monthly, tracking my slow rise to 0.11. I chose RT to prostate bed only, 39 sessions, 70.2 Gy, no ADT. Nadir was 0.075 – clearly my cancer had spread beyond the bed, but where?
My US medical team recommend STAMPEDE, I said no. With no support for fluciclovine or Choline imaging, and as I did not qualify for US Ga68 PSMA PET trial, I found my way to the Netherlands for readily available Ga 68 and was accepted into the Ferrotran nanoparticle MRI trial. The nanoMRI, not the Ga 68, identified five suspicious pelvic lymph nodes. It seemed those mets likely made up the bulk of my then 0.11 PSA level. When I shared the findings with my US medical team they once again recommended STAMPEDE.
Continued research with focus on removing tumor burden led me to salvage extended pelvic lymph node dissection using the frozen section pathology procedure. That surgery, done in Belgium, confirmed six cancerous nodes, including para-aortic, and yielded a nadir of <0.010 (the value post RP I choose to rely on as best indicator). I was and continue most grateful and ecstatic. That was over six years ago and although my PSA has very slowly risen, it has been holding 0.03X range for past three years. I did do one year on bicalutamide as a compromise right after my ePLND – that ended over five years ago.
In my bio is a listing of diet changes and supplements and ferritin reduction efforts (higher levels of ferritin are associated with metastatic PC). I do not know if these efforts are helping keep my remaining cancer cells at bay, but I am not willing to stop these efforts. I am doing bimonthly PSA testing, annual imaging and blood biopsy testing and will take my next actions no later than PSA of 0.050.
Let me know if this is inadequate answer. All the best!
Salvage radiation, of course.
But the questions are:
1. Whole pelvic radiation to get the pelvic lymph nodes too?
2. short-term (4 months) of hormone therapy?
Your PSA is just below the cut-off where whole pelvic radiation was found to be useful, and the fact that you had a positive margin suggests the recurrence is probably in the prostate bed only. 4 months of hormone therapy has been found to improve cure rates.
prostatecancer.news/2022/05...
Thank you Tall_Allen
I would like you to consider taking BROQ, a sulforaphane supplement. Available on Amazon or broq.life. The below double blind, randomized, placebo-controlled study of this basically stopped BCR. The product is made in France (has a different name there, the US name is BROQ), and would suggest the doses that were used in the study. IF that does not work for you after a couple months (will take that long to see RO, get scheduled, etc), salvage radiation is the next best option I believe. havent looked at your whole history so that may inform different. Good luck brother.
aacrjournals.org/cancerprev...
As a general note, with any supplements beware interference with PSA test accuracy.
"So far, the list of substances that may interfere with PSA tests, creating false negatives, includes biotin, curcumin, genistein, EGCG, resveratrol, capsaicin, saw palmetto, pygeum, beta-sitosterol, and statins (see this link)."
prostatecancer.news/search?...
Link is prostatecancer.news/2019/04...
In my case Curcumin does NOT alter the PSA reading. In engineering we have this proverbial phrase: "A test is worth the cumulative opinions of 10 experts". Tested bidirectionally, (start taking and stop taking) NO change.
My thoughts on this "interference" are different than most. Most of the time we use PSA to measure trend, good or bad. I equate it to weighing myself on my home scale. They are pretty accurate today but who cares if when you first weigh in, you are up or down one or two. The key is weighing on the same scale, same time, same dress. This shows trend so you know if what you are doing is working or not. You dont switch scales. Same with suppliments, the worst thing to do would be to stop before a blood test. That would be like normally weighing with clothes and shoes on, and then without clothes and shoes. Again, it is compairing last test vs this test.
Thank you sir. All suggestions are welcome and appreciated.
I second the BROQ intake, I am doing that along with CLAV ( a German Sulphoraphane ) and third one (PURE Therpror) each day as well, combined they ensure a stable and higher amount of the 60mg given in the recent very positive PSA lowering studies, ya, not cheap, but if it helps beef up the immune system and stalls any of the bad juju , its so entirely worth it, it certainly cannot hurt to have it in your corner, Sulphoraphane helps support many other things in the body as well with its anti-inflammatory and antioxidant effects
PSMA pet to see if recurrence confirmed and confined to prostate bed which is the most common site (70percent I believe) and then radiation. I am unsure if ADT is added for recurrence localized to areas that radiation will treat . I believe the last thing I saw was not statistically helpful if localized BCR
The group will tell you get a PSMA PET scan
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