Had Robotic RP, SRT with Lupron all in 2017 - PSA post-RP was 0.81, PSA was 2.3 at dx -- after SRT ( still had Lupron in my system ) was undetectable till 12/17/18 - PSA continues to rise last PSA was 1.25 up from 0.48 in just 6 weeks earlier!
Have not been on Lupron or other PSA suppressants since 2/18. I see my MO at MSK next week.
Does anyone know what the median time is from BCR to mets, to death if left untreated?
Thought has crossed my mind, but will probably, if told to go back on Lupron. If so, how long can Lupron keep the PSA under control and once ADT becomes ineffective, what would be the next med/step for me? Dr. said Axium scan, but I m now seeing from others here about false positives.
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ken12491
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Thanks, Allen, any advice u give is just that, opinions. I would never use u or it alone to act, but based on what I see, you are a subject matter expert for this forum. You appear to be a very valuable asset to many. Also, I would never quote you or anyone else, except my own PCP.
I see the MO on Monday is there any addition " opinions ' you could leave me with? Again, we all are entitled to our opinions.
Axium scan now?
If he says Lupron, what in your opinion what would hit me less hard, 1 month shot or the 3 month one?
Very difficult to question a Dr. from MSK, but I would respectfully - he is a nice guy, no arrogance and approachable.
I'm finally realizing this is a chronic disease and needs to be monitored, maybe for my life. thank again
There are three reasons for which there is widespread agreement that it is time to start on lifelong ADT:
1. detected metastases (with a bone scan/CT)
2. rapid PSADT
3. High PSA
You are evincing #2. You can have an Axumin scan, and if your pelvic lymph nodes are cancerous, and you haven't had all the pelvic LNs treated yet, you can do so. Outside of the pelvic LNs, there is no convincing evidence that metastasis-directed therapy accomplishes anything (other than temporarily reducing PSA), but if it is entirely safe, why not?
If you decide on Lupron, I think you should get a multi-month shot of Lupron - that's the advantage of Lupron over Firmagon - convenience. There is no difference in side effects between 1 month or multi-month.
Agree with you...when I had my Axumin scan the PSA was between 2 and 3, so I felt confident in the result... at the rate Ken is describing, it seems like his PSADT is about 3-4 weeks, he could have this test set up and done and his PSA will be closer to 2...greater likelihood of accuracy....
I would try to get a Ga 68 PSMA PET/CT study. WIth a PSA around 2 this study has a very good detection rate and very few false positives. After the study I would start ADT until a definitive plan of therapy is decided.
You could have metastases in the pelvis which could be treated with IMRT or SBRT. If there are distant metastases perhaps they could also be treated with SBRT or with Lu 177 PSMA treatment in Europe, Australia or South Africa.
Too many variables that influence outcomes. Alternative medicine to complement or replace convention medicine and a vegan diet with juicing will significantly extend life regardless of what your MO says. It's so early in its rise you can nip it now. Find a wellness or holistic clinic for high dose vitamin C infusions coupled with ozone therapy. Go with 4 to 8 gm per day curcumin, 4gm/day vitamin C, and 1 gm per day quercetin while doing this. Watch it drop! Yes it does cost money but it is your life. Anvirzel (oleander extract) is also very promising.
The easy answer is, how long is a piece of string?
Prostate cancer comes in various varieties, the Gleason Score says something about this but it is not a lot, the cancer can be very slow burning or quite fast even in grades.
A six can hang about for years, in an older man it can be safely observed, sometimes for years. Sevens are a lot more aggressive and the progression to a ten can be exponential in terms of aggression.
So as others have observed, prostate cancer can kill in a few years, or you can roll on for five, ten or more years.
Maybe when we have routine genetic screening on every case and doctors start looking at life spans with the genetic results we will have a better idea of how each case will pan out.
As a PET technologist who has performed a dozen or so Axumin scans, the only positive ones I have seen were with a PSA over 2.0. I had an Axumin PET scan a year ago with a PSA of 1.8 which was read as negative. Six weeks later I had a PSMA PET/MRI which found 4 lesions: 2 in the prostate bed, 1 in a seminal vesicle, and 1 in a pelvic lymph node (biopsy confirmed). So now I am stage 4. IMHO PSMA scans are the gold standard, but will not be approved by Medicare in the US until probably next year. In the meantime Axumin is the next best thing, but with the > 2.0 PSA caveat. There are several companies with PSMA agents in the pipeline, including the one who makes Axumin. I am trying to keep my cancer at bay until I can get another PSMA scan. Xpbdb
Ken- I am also treated at MSK (in NYC). My PSA was in the 40s and my Gleason was 9. I had 3-4 mets in the bones (pelvis and verterbre) and one dirty lymph node. Dr. Scher treated me for first 5 yrs and now Dr. Rathkoph treats me. I had my prostate removed almost 7 yrs ago, a few months after diagnosis, along with 30+ lymph nodes. For several yrs, I took Lupron intermittently, and for much of the time, when I had the Lupron, I also had Zytiga (with Pred). About 2 yrs ago, I stopped taking the Zytiga at docs' recommendation, and went on Lupron contiuously. I had one large tumor hit with rad 5 yrs ago. I am still responding well to treatment. I am not a doctor and many on this site know much more than I do, but FYI, I am not sure I would still be alive had I not been taking Lupron.
Consider a PSMA study .... while this is a research tool at this time in the USA you may qualify for some studies. For info on Nuc Med prostate tracers see:
Sites that perform PSMA as of writing are in the article.
If you cannot get PSMA the Axumin study is easier to get & FDA approved but not as sensitive. Consider getting the Axumin study right away while waiting for your PSMA as getting PSMA is likely to take longer.
Are you an candidate for additional Radiation Therapy????
Read the book, The Emperor of All Maladies some 7 or 8 years ago,,,highly recommended,,,check out Amazon for what it is about and overwhelming 5 start reviews.
Basically treatment failure history going back 4,000 years to ancient Egyptians.
Closing chapter suggests with decoding of human genome and understanding of cancer development at the molecular and cellular level, future advancements in medical advancement will be breathtaking.
Just think the past 7 years since I read this book,,,Xtandi, Zytiga, Axumin, PSMA, Lu 177, Xofigo, Keytruda,,,you get the idea.
If you can just hang in for a few years,,,very doable with current technologies,,,5 years from now medical advancements in cancer therapies will make today’s medicine appear as bloodletting primitive torturous witchcraft.
Not a better time in history to have been diagnosed with PCa.
Thanks, John - best of luck to you --- you didn fill out your profile, that would be helful to others that respond to you --- i m in between DR, was with the head of RO he has now passed me off to a MO, yet to be named... you like ur guy? if so, tell me why an maybe I ll asked for him.
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