My story

20018 66 y.o. PSA 12 on routine check symptoms just a lot of peeing and urgency at times. 2019 12.2 Dr said biopsy was an option but agreed to AS next PSA 12.5, 3 months later 10.6 and then 3 months later 10.2 . At that time Dr called me at home and said "I don't think you have cancer as PSA never drop" with cancer. Same Quest lab. Then Covid hit and rather than sit amongst a bunch of sick folks I did not follow up. July 2021 got a new primary care Dr and requested PSA. Tested PSA was 32. Biopsy confirmed PC gleason 9 -10 all 12 cores 70-100% 5+5 and 5+4 . Started HT 2 months later PSA 1.3 . RRP surgery 12/21 if VA agrees that is a good course. CT scan showed mets all over and followup x ray said no (old fractures/bone spurs) but no organ involved. . Getting second opinion at the VA (Agent Orange inhaling /drinking water ) Thats my story and I have no choice but to stick with it. Anyone else have PSA drop and come back stronger without any treatment? Have a good day

PSA dropped but still too high to let it go. Most likely you had a minor infection or other issue besides cancer affecting your PSA. The PSA at 10 was concerning.
I had a primary care doc who never bothered to test me for PSA, mid 50,s and me complaining about urinary symptoms. Never crossed his mind to add it to the yearly blood test. A year later new doc ordered and was surprised the previous doc didn’t.

Why would you have surgery if you have suspected Mets? I would be looking at some more sensitive scans that can be more reliable. With so much G9-10 and 32PSA it should be expected to have Mets. If you do have even local Mets, surgery won’t cure you and only give you the expected negative side effects of surgery.

Since you are at least high risk and probably advanced stage PCa you should be in the care of an excellent medical oncologist that specializes in advanced stage prostate cancer. Where are you located?

That you have PCa and were an Agent Orange vet, you should file for the disability benefit. Several men on this board have done so and can provide reliable advice. The disability payments date back to the filing date, I believe. So don’t put it off. The benefit can be several thousands of tax free dollars per month.

Billy welcome to our club, sorry you had to find us, but you'll get lots of good advice, and support here. Just remember nbody here is a medical professional, we are just a bunch of guys that were more or less as unlucky as you who chose to educate and advocate for ourselves.

With that said, I'd def follow up and ask for PSMA Pet scan. You want to be 100% sure that you dont have mets before you move forward with surgery, because if you do have mets, surgery wont cure you, so why go through that.
Good luck and keep us posted.

Billy, Terry’s reference to an infection would be prostatitis. Your leg infection from the accident would not be a factor.

No advantage to surgery for most men. If you don’t want it then just simply rule it out.

Now start learning about External Beam Radiation and Brachytherapy. Don’t ask your urologist as he is not board certified or an expert radiation practitioner. Seek out a few radiation oncologists that use the different forms of radiation to treat PCa and get their assessments.

Billy,
Unfortunately, you have a very serious diagnosis. With a Gleason 9 and 10, plus a PSA of 32 it would seem that Mets may be likely.

By x-ray, I'm assuming you mean a bone scan, which isn't the most sensitive scan around.

As noted by others, an RP seems pretty questionable by now. I think it would have been important to verify that you have mets, but because you are on hormone therapy and your PSA is now low, it's possible that metastatic lesions may have shrunk so as to be less detectable.

In your shoes I would be talking to a good medical oncologist who specializes in prostate cancer. I suspect you may end up with a second line ADT (HT) medication such as Zytiga or Xtandi added to the ADT you are already ready receiving -- especially since you have shown such a good response AEB your current low PSA. Another option might be Chemotherapy instead of the second line ADT.

Good luck !

Hello, Billyblob ----

We welcome you here -- it's a supportive band of brothers here --- and we all look after each other.

That being said, I want to echo the sentiments shared above. Time IS of the essence from what you have shared!

With a PSA of 32, and the strong suspicion of metastatic involvement, I encourage you to get an appointment booked now with a top-notch medical oncologist.

They get booked up, and so getting that appointment booked now should be a priority and proactive NEXT STEP.

You need to get this correctly diagnosed and assessed. That will likely involve a series of scans and diagnostic tests. After my initial biopsy, which confirmed cancer, I went through a full series of scans --- head to toe.

From there, your doctors can start creating an individualized treatment plan for you. You have started ADT --- and that was also my first treatment step.

Along with that, additional treatments were needed in my case. Each case is different, but do all you can to assemble a top-notch medical team who can take the lead, and plan a treatment plan for you.

Handshake of support and encouragement, from across the miles ---
CYCLONE --- # Iowa State University

Pratoman said...
Billy welcome to our club, sorry you had to find us, but you'll get lots of good advice, and support here. Just remember nbody here is a medical professional, we are just a bunch of guys that were more or less as unlucky as you who chose to educate and advocate for ourselves.

With that said, I'd def follow up and ask for PSMA Pet scan. You want to be 100% sure that you dont have mets before you move forward with surgery, because if you do have mets, surgery wont cure you, so why go through that.
Good luck and keep us posted.

What Prato said, PLUS: whether you are able to diagnose mets or not, if you are a high PSA G9-10(is that right?) you have a high likelihood of having some buggers which have left the prostate and are out there somewhere, just too small to detect yet. So surgery still may not fix you up. So, talk to radiation oncologists and medical oncologists regarding whether it is a good bet for you to have surgery and all of the possible bad, very unwanted side effects that sometimes come with that. Of course, the RT and hormone and any other therapy can have some bad SEs as well, though USUALLY not as bad or as sudden. But the thing is, if you have mets- you will need the other therapies, and whatever SEs that might add- anyway. Regardless of surgery. Why take on the SEs of all 3 treatments if there is not a really good chance the surgery will rid you of cancer?

Look carefully at the odds of you actually being met free, regardless of what current scans show, before you agree to surgery. With your G scores and PSA levels, the surgeon is going to have to do a wide cut, just as was needed in my case, which increases odds of unpleasant SEs significantly. But, if it has escaped even a small distance out from the prostate bed, that wide cut still won't get er done. But don't listen to me, just consult with the radiation and oncology guys and add their opinion on this subject to whatever the surgeon is telling you. But, just remember, there is a tendency for all of them to favor their specialty. But just ask all of them - regardless of what the scans show- what are the odds that you have mets too small to detect yet.

All of the above only applies if your scans show no mets. If they do show mets, I think you already said your surgeon would not do surgery if you have mets. And it would be wonderful if you could get that newest scan, the PSMA. Baring that(so new as to be hard to get) you should at least have an auxumin scan.

Post Edited (BillyBob@388) : 10/30/2021 9:25:01 AM (GMT-6)

JNF said...
Why would you have surgery if you have suspected Mets?

It's pretty well established now that in oligometastatic disease if you close the barn door you can pick off the escaped horses with good - and one of the references here argues even conceivably CURATIVE - effect. Systemic disease of course not so much and @billyblob let's pray you're not there yet: I suspect you are not.

So:

billyblob said...
surgery is not an option with several mets.

Be prepared for a possible "discussion" here: this forum will help. Remember: the medicine is getting better all the time. If your Dr is not keeping pace, get a new one.

Link: https://www.urotoday.com/conference-highlights/astro-2021/133564-astro-2021-newly-diagnosed-oligometastatic-prostate-cancer-where-should-we-focus-the-beam.html?utm_source=newsletter_9721&utm_medium=email&utm_campaign=draft-for-approval-astro-2021-embracing-change-advancing-person-centered-care-highlights-in-prostate-and-bladder-cancer

"Taking a “total eradication therapy” approach, Reyes et al.6 prospectively followed 12 men with newly diagnosed prostate cancer with <= 5 metastases. These patients were sequentially treated with neoadjuvant chemohormonal therapy, followed by radical prostatectomy, adjuvant radiotherapy to the prostate bed/pelvis, SABR to the metastases, and adjuvant ADT. At 1 year, the undetectable PSA rate was 100%, at 2 years was 83%, and at 3 years was 67%. Furthermore, all patients experienced a return to normal testosterone level, and no patients developed castrate resistance."

100%!!!!

AKA: put aside these stupid surgery v radiation wars and "get medieval on its ***" Now I would want to know about timing in light of avoiding UI but still, 100%!

Where there's life there's hope @billyblob. And "you're not alone" might get starred out, but it's true. Good luck with the scan. Hopefully you'll "light up like a Christmas tree" BEFORE it's cut.

Bone scan Friday 11/5 came back same as earlier one( multi mets). Next oncologist and hopefully figure this thing out. Interesting is I had an MRI on my leg(osteomylitis active) and no mention of cancer at that time July 2021 even had a referral to Stanford ortho. For the record Ive had several bone grafts with bone removed from both sides of my pelvis,broken bones hand and leg arthritis shoulders and hands. Falls off everything from ladders to motorcycles. Not sure if this effects readings but the last time xrays showed no mets????????????. Well again thanks to all

"The bone scan showed two small "hot spots", which subsequent x-ray plain films showed not to be evidence of metastases. They were either prior injuries or arthritic." Copied and pasted from Redwing. This common from bones scans?

billyblob said...
"The bone scan showed two small "hot spots", which subsequent x-ray plain films showed not to be evidence of metastases. They were either prior injuries or arthritic." Copied and pasted from Redwing. This common from bones scans?

yes it's common. happened to me in fact. welcome BB. sorry you have to be here but its the place to be