Rapid Reoccurance and Short Doubling Time after RARP

I know a number of people that have had this issue. The usual recommendation is that you have Salvage radiation, which can give you more time before it comes back again. After that you would go on Lupron or an equivalent drug (Orgovyx, Eligard, Fermagon) When your PSA hits 2 After radiation.

Have you had a PSMA pet scan? A doctor would almost definitely advise that because your cancer has come back after surgery and you want to make sure it hasn’t metastasized. You must have that test before going on ADT because it will reduce your PSA and make the test less reliable.

3 1/2 years after surgery, my PSA started to rise and I had salvage radiation. That gave me 2 1/2 Years before it came back again, and I went on Lupron. I had a Gleason seven so my cancer was not as aggressive

The thing is you have cribriform. That makes your cancer, very aggressive, Along with the Gleeson nine it gives you a high percentage chance of having metastasis so you want to treat it aggressively. You should ask your doctor if your cribriform Is over .25 mm. If so, that makes it even more aggressive.

It sounds like your doctor is not following the standard of care. You should already have had salvage radiation based on NCCN and guidelines.. I think it would make sense for you to go to a center of excellence to be treated from now on. A Mayo Clinic, Or equivalent would be treating you differently than your doctor is treating you now. You have a very aggressive cancer you need to be proactive and get somewhere you can get the proper treatment.

I agree with you on this totally, jeff….but didn’t he go to Mayo in Phoenix? Aren’t they top notch?Cannot believe they would drop the ball so badly.
Wonder if PSMA was done before surgery to see any distant metastases?

Thank you for the discussion guys . I had great care at Mayo and I understand the salvage treatment options. I believe that such quick BCR with such a short PSADT is very uncommon so I was just polling to find others with similar numbers and to find out if in fact, short PSADT translated to short time to castration resistance.

I think you should be more concerned with short time To metastasis. You have all the signs of the cancer metastasizing. Yes, you Probably would become castrate resistant sooner than other people, But the proper treatment might delay that.

You are way past dealing with the urologist. You need to get yourself an Oncologist that specializes in prostate cancer.

I can’t believe they’re not doing more with you having Gleason nine, intraductal and cribriform.

A few weeks ago at the weekly Advanced prostate cancer Ancan.org Meeting two people with Gleason, nine were discussing the problems that we’re having with metastasis. Neither of them had had the cancer for long but had multiple metastasis and were unsure about where to go next in treatment. This isn’t the first time I’ve heard this in the meetings, It’s not a common occurrence, but it’s not unique.

I was at an online meeting discussing new Gleason score Changes and issues with cribriform.
Here is a graph from that meeting, and you will notice that those with a five in their Gleason score had extremely high chances of metastasis and shorter overall survival. Be proactive!

Well, your clinical data- GS, Grade Group, PSADT and the cribform you describe from either your biopsy or pathology report indicate high risk PCa.

You day three months after surgery your PSA was .26...from my foxhole as a layman that us not BCR, rather it is indication of micro-metastatic PCa already outside of the prostate bed and those lymph nodes taken during your surgery.

You don't say what your PSA was prior to surgery nor any imaging you and your medical team may have done to try and determine whether to the best of imaging capabilities your PCa was confined to the prostate or had spread. It's immaterial now, you deal with facts and the clinical data you have.

You could do another PSA test and if, well, when it dies, rise to between .5-1.0, image with a PSMA which may show where your PCa is. Keep in mind it won't show all, sone sites just too small to be seen.

An aggressive PCa such as yours may necessitate an aggressive approach. If you have not, read the NCCN guidelines on advanced PCa. They can serve as a starting point in discussions with your medical team on imagine and treatment guidelines.

Also, do a literature search on triplet there for advanced PCa. You will want to discuss that with your medical team, ADT + ARI + Chemotherapy.

If you have not already, bring a radiation and medical oncologists on board your medical team. It may be time to move to them as you leads while the urologist supports.

I say radiologist since depending on imaging results, radiation could be an option.

Mine is also aggressive, though less so than yours and I have been aggressive in my approach.

You say you have had great care, I think that remains to be determined on how your medical team acts now. I fired one of my medical team, a urologist, Director of Urology at a NCCN Center and a major North American Urology Association when he failed to actively listen to me and be open to a more aggressive approach. He had a superiority complex, was unwilling to consider any treatment outside of standard of care and in my mind, was only recommending perfunctory care. I am convinced I would not be here now had I not thanked him for the consult, left, never went back and found a medical team that supported triple therapy though it was not mainstream then.

Given what you describe, my journey and what I know now, not sure your medical team has demonstrated a proactive and aggressive approach to treating you. I will say this, you need to drive the discussion in your consults, it should be evidence based, that's why I say NCCN as a starting point but clinical trials are fair game for discussions during consultations. When I mentioned the PATCH trial and motherly using an ARI from the EMBARQ trial, my oncologist was open to discussion and consideration.

Kevin

We really need an edit button on our posts...

You day ("say...") three months after surgery your PSA was .26...from

They can serve as a starting point in discussions with your medical team on imagine ("imaging...") and treatment guidelines.

When I mentioned the PATCH trial and motherly ("mono-therapy") using an ARI from the EMBARQ trial, my oncologist was open to discussion and consideration.

Steve: I am in the exact same boat. Gleason 4+5, doubling time 60 days, I had to do my research to discover the things that you have described. PSA is probably around one by this point and just had the PSMAPET scan and nothing showed up. I now am to wait three months before my next PET scan. I was not aware of the impact on ADT therapy until you just advised. Although the prognosis is statistically, dim, things are changing in terms of early detection that probably didn’t exist when those studies were performed. Let’s keep the faith brother!

If you click on the three dots in the bottom right corner of your replies, you can get an edit option as long as you have not waited too long before trying to make the changes.

Unfortunately, by the time I really proofread my posts, too late!

I think most can "read" and understand what I meant to say before autocorrect thinks it knows what I'm trying to type!

Thanx though!

Cooper, it is good to hear from you. I'm sure you have dealt with all the, "my dad and prostate cancer 20 years ago and he's still around, so don't worry" types of comments. I have read just about every study & trial, read all about each 1st & 2nd generation ADT drug, radiation, etc. While it makes me informed, it really changes little. You and I are in a VERY small group and clearly, there is a very high probability that our mortality is in the balance. ADT and even chemotherapy will most likely work for only a short time, and sometimes not at all. I think we have two chances at 5 years, a miracle or if we live long enough, some fantastic new treatment opportunity becomes available. You stay strong and I'll pray for you!