After about three years of <.01, my PSA reared its ugly G9 head again last March. (Had prostate removal in 2014 and radiation in 2017.) My MO wants my PSA to reach .5 before a scan to pinpoint where cancer cells are before beginning new treatment. It has been a long wait in the PSA waiting room since March. Part of my mind says begin ADT and don't worry about where it is, but Duke earned it reputation for medical excellence for a reason; therefore, it is reasonable to follow my doctor's advice. At any rate, it looks like my PSA doubling time is four months based on a March test of .2 and an August test of .4. Anyone who would like to weigh in with an opinion or advice is welcomed.
Double time seems official? - Advanced Prostate...
Double time seems official?
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Jvaughan0
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Based on my own experience, your psa is rising and will continue to rise. I had been there and made the mistake of waiting untill a psma found the LN Mets and CANT radiate so I started adt at 1.89 psa. If I was you, I will start adt NOW.
In my opinion it was a mistake to start with ADT at a PSA value as low as 1.89 🙂
Even though a psma scan found two LN Mets ?
I think you will not have a shorter overall survival if you wait for the PSA value to get to 5 or 10. The study of intermittent ADT by Crook restartet ADT at a PSA value of 10.I just take Bicalutamide as long as I have lymph node mets on PSMA PET/CT only. I think this is sufficient for such a low tumor burden.
Thank you. It’s too late now, I already started ADT. but from what I have learned and of course I may be wrong, there is no one size fits all. The trigger for starting ADT:1) a psa DT less than 6 months.
2) imaging scans confirm Mets.
3) psa greater then 10
Yes, some guidelines mention that. But they mean CT/bone scan with imaging, not a PSMA PET/CT. James, a STAMPEDE investigator, mentioned at the ASCO: you are still M0 if you see mets with a PSMA PET/CT but not with CT/bone scan. Many doctors do not make this difference. James is right, the SOC is based on studies using CT/bone scan.
Yes, I totally agree that the studies so far is based on using ct/bone scan.
Oh, by the way, his DT is 4 months that is why I suggested starting ADT now.
My DT varied between 2 and 3 months. I discussed this with Prof. Heidenreich. He said I see no problem if you wait for the PSA to reach 10 even though you have a short DT. Because currently we cannot detect anything with a PSMA PET/CT.Now, as I can see the lesions, I scheduled an Lu-177 therapy to get rid of them.
To be honest, I am very confused about this disease and no one should listen to me, I am just stating my personal experience. It’s very very hard for me to navigate through all the ups and downs of this disease.
So right.
• in reply toGP24
Wait until 2.0?
GP24• in reply to
I intended to tell Ahk1 that it wasn't a mistake to wait until the PSA value reached 1.87. There is no fixed PSA value when you need to start with ADT. The rule is: do not treat the PSA value. At a PSA value of 2.0 you have a good chance to detect lesions with a PSMA PET/CT, so I would get that when the PSA value rises over 2.0 ng/ml.
The GA68 PSMA Pet/CT scan shows good results when PSA reaches at least 0.5. This from the doc I interviewed with at UCLA prior to getting the scan. He’s the guy who ran the program there. The newer Pyl PSMA scan is probably a bit more sensitive.
• in reply toStayingOptimistic
I’m with yah! 💪
I had to wait for my PSA value to get over 3.0 ng/ml to detect mets with a PSMA PET/CT.I had one at 0.9 which did not show anything. Therefore I think even 0.5 is too low. A rising PSA value does not harm, it just causes patient anxiety.
HiI am a Seattle Cancer Care patient.
I had the same experience last year. Had to wait 8 months to get to .50. They did the scan found bad boys in some lymph nodes. I then started Lupron, zytiga follows by radiation. As you say I needed to trust the experts
My situation is very similar to yours. All my treatment has been done at Mayo in Minnesota. My psa is doubling every 4 months but still low. Last check four months ago was 0.24. Mayo said wait till it's above 0.5 and then scan for disease. Will have next psa check in the coming week. Dr at Mayo said not to be anxious at this point as numerous options are yet available. Please continue to post your treatment journey as it will be helpful for myself and others to see what a top notch center like Duke advises. Best Regards
What do you hope to achieve by waiting? It will be a self-fulfilling prophecy - if you wait, you certainly will find metastases. You will insure that they grow and spread. With that kind of doubling time, consider more intensive hormone therapy, like this clinical trial:
clinicaltrials.gov/ct2/show...
It doesn't take prophecy to see where this is headed. I once asked a very knowledgeable man who he would recommend at Duke. He gave me an answer. Even though I have serious reservations and have discussed them with this new MO, this specialist says wait. I am only certain of life's uncertainty. At this rate, I have to wait another month. Is it a month too long?
Is this Armstrong? The MO owes you further explanation. Here's what I would recommend discussing: "Say we find some bone metastases, what then? Is there any data that show that waiting for larger bone metastases and zapping them extends life more than beginning ADT now and preventing their growth in the first place?"
Hopefully, for the good of the group, I'm sharing my MO's last email. It seems reasonable.
"Unfortunately almost all imaging technologies such as CT/MRI, bone scan, and PSMA or Axumin PET will fail to detect the source of this PSA production in your body at this low level. While the FDA recently did approve the PSMA PET and this is felt to be the most sensitive test, it has very poor sensitivity at this low of a level and the minimum level for which it can be ordered is 0.5, which was the cutoff for most of the trials that published on this. Below 0.5, the vast majority of patients have normal imaging and thus while reassuring, it is not helpful. I would suggest repeating the PSA in 3 mo and we could order a PSMA PET at that time if 0.5. Metastatic disease does not tend to become detectable on CT/MRI or bone scan until a PSA of 20-30 on average, and 1-3 on PET. I do not recommend ADT in this setting of such a low PSA as we discussed at our visit. You can get it of course, and it would reduce your PSA, but is not needed at this point because of its side effects and because it does not cure this recurrence."
That doesn't answer the question, does it?
Nope. Not sure there is an answer, just a lot of hope and a little luck. I may be wrong, but even that clinical trial you mentioned requires a >0.5 PSA inclusion screening. Still, the picture becomes clearer to me. My MO is thinking the cancer is likely limited to lymph nodes, and ADT is no friend to a family history of heart disease and diabetes. And if he is wrong, well... "The fault, dear Brutus, is not in our stars, but in ourselves, for we are underlings."
"My MO is thinking the cancer is likely limited to lymph nodes" But didn't you say that you've already had salvage radiation to the pelvic LNs or was it only to the prostate bed? If they didn't treat your pelvic LNs - just do it!- you might still be cured.
I reviewed my notes from years ago and I remember the radiation oncologist saying treatment was primarily to the prostate bed with a little radiation outside the bed. My MO's notes, based on medical records forwarded to him, state "IMRT to the prostate bed," so you may be right. I always assumed there was a big blast furnace going on down there that radiated the entire area.
That's good news in a way. At Duke, you have Bridget Koontz in Radiation Oncology.
My husband was diagnosed Gleason 10 in spring 2018 with PSA of 6.11. Highest PSA has been 12.46. Had RT in Sept 2018 and then in ATLAS trial until Oct 2020. PSA has been .02 to .05 from Oct 2018 to Feb 2021. April .06May .10
June .12
July .18
Had not seen his MO since Oct 2020. At this month's appointment he suggested 'watch and wait' before CT/bone scan in 3 months. His words" could start treatment now, typically would be androgen deprivation therapy alone but in his case with high grade maybe consider combined, probably leuprolide + abiraterone when time". We are in a HMO and the HMO does not have access to a PSMA scan "yet". Your thoughts? He is without treatment of any kind at the moment and his MO says "he"ll be on drugs soon enough, for the rest of his life."
What was ATLAS trial? What makes you think there is a clinical recurrence?
' ATLAS is a clinical research study of JNJ-56021927 (apalutamide) and primary radiation therapy in high risk prostate cancer patients.' Study's focus is to determine if study drug, combined with a GnRH will increase time to metastasis in patients receiving primary radiation therapy. Randomized, double-blind, placebo-controlled Phase 3 study.'
Watching his PSA numbers rise in the last few months after being so static for so long has scared me (and him). Hoping they will level off, but his number was low when he was diagnosed. His Dr wrote in the follow up notes "for now, watch /wait but I doubt that will be long". So I don't know if that's clinical recurrence, but it feels like the beast is awakening.
PSMA scans are not great for detecting early local recurrence- mpMRI, read by an expert radiologist, may be better.
What has his testosterone been? Increasing or stable? Maybe talk to his RO. I’m practically identical in diagnosis and treatment except I won’t finish ADT until next spring hopefully. My RO expects my PSA to hover somewhere around 0.5 (currently undetectable) after all is said and done. He expects there to be a lengthy period of PSA recovery after 24 months of Lupron+Apalutamide. Hopefully it’s just a normal adjustment for your husband.
I first answered him based on my own experience and OFCOURSE all the stuff I learned from you
Several related questions.
1. If it is already metastasized, how important really is the scan.
2. If you are doing a scan, why would you not wait until you hit PSA 2.0 to decrease the likelihood of a false negative.
3. As long as you have reason to believe androgen deprivation will work, why would you not start out with Triple Treatment of apalutamide, abiraterone acetate + prednisone, and LHRH analogue? And why wait for further testing or escalation of PSA test results?
1. He hasn't seen any metastases.
2. Because JVaughan0's doubling time is 4 months.3. There's a clinical trial for that.
I go with T Allen....If one can tolerate ADT, take it.....Sure side effects and other health conditions may influence this choice.
Nothing is one fit all....Thanks Allen
Your DT may be anywhere from two to six months. Your PSA tests are single decimal point denominated so their quantisation or rounding error of 0.1 leads to a 50% uncertainty. For example, your 0.2 could have been 0.150 to 0.249 and your 0.4 similarly 0.350 to 0.449. Add on top of that the 20% allowable intralab test variance and get an even wider range.
Thank you for that information and examples! I didn't realize that and I do feel somewhat relieved.
A friend who originally got surgery then imrt and his PSA came back and then he got the protons and it worked! No side effects and PSA went back down to undetectable. You could do 3 months or 6 months of ADT I did 6 months but I lost some bone density so I kind of wish I'd done 3 months. You can take oral bisphosphonates like fosmax liquid once a week and that can harden up your bones keep them from resorsorbing on the ADT.
If you want to do a one and done scan, wait until PSA reaches 2.0.
If you do it before then it increases the risk of a false negative.
You can save time by staging treatment the day or week after you get results.
Definitely hormone deprivation therapy.
What a pain in the ........... Especially after everything that you've been through. I wish you all the best with your continued battle.
Thanks. My best to you on your own journey.
For what it's worth, I believe the generally accepted approach for your situation in Oz (where PSMA PET is a little more established) would be to monitor the situation with PSMA PET until you see something, and then look at the possibility of zapping what you find. The intent isn't curative, because it almost certainly won't work out that way, but rather to delay ADT. If nothing shows up, 6 - 12 month testing to make sure neuro-endocrine PCa isn't lurking may also be considered. Although continuing absence on PSMA PET certainly doesn't mean there isn't something there, it is generally believed that negative scans strongly suggest nothing too drastic is imminent.
I appreciate that PSMA PET may be more expensive or harder to get in the US, and that a judgement is being made that "treating the PSA" won't significantly impact longevity - but unless the PSA is really ripping along, that's the approach that seems to be increasingly taken here. Lu177 is fairly widely employed and my impression is that, at least at the main research hospitals, there is a tendency to hold off ADT in the hope that Lu177 may soon be demonstrated as a viable treatment for BCR in some men - there are trials looking at that now.
Uncle Sam could learn a thing or two about prostate cancer treatment from Oz for sure.
My G9 nemesis also became detectable recently after about 6 years of being undetectable. I use an ultra sensitive test so my values are lower than yours but it has increased the last 3 PSA tests in a row. I am starting Provenge therapy next week. My PCa MO, Dr. Sartor at Tulane said that was a reasonable course to take. Once my PSA reaches 0.5 I can opt for a PSMA scan (not sure if Medicare covers it yet) otherwise I’d have to wait for it to reach 2.0 for an Axumin scan to be most effective.Once we determine the problem area SBRT may come into play and there are a few other therapies he outlined during our last visit. For now it’s Provenge while PSA is extremely low and I’ll see him again in November, meanwhile I’ll continue to test and consult with my local MO who is very good also but not the specialist that Sartor is.
Ed
I was thinking Provenge was a later stage option and insurance won't pay for it early on.
Follow your doctor and Google PSA doubling to better understand he is thinking. Some scans are PSA dependent but If they can or if they cannot see the cancer that is very important also. I've been doing this for 10 years and it seems to work.
Why not start on BROQ to slow your doubling time per the link below. It is what they used in this study and is available on Amazon or BROQ website. pubmed.ncbi.nlm.nih.gov/259...
Perspective: you have not had complete pelvic lymph node (extended) field RT which is your last and best hope for a possible real “cure” if there is mot metastatic spread outside of the pelvis. PSMA PET scans are very frequently positive and diagnostic at PSA levels down to 0.20. That is the threshold for UCLA, for example. Do not wait. Insist upon referral for that scan now. If the PSMA scan does not show metastasis outside of the pelvis at this time, then go for whole pelvic LN radiation treatment combined with adjuvant ADT short term. (6 months or probably better, something like two years).
Nothing is gained by waiting in this case. Good luck.
Only if there are already mets beyond the pelvis do these other considerations apply.
Hey Jvo! I’m just a pc fool not a doctor . If it were me I would get on adt at psa2.0. ASAP to stop the roll .. good luck in your decisions! ✌️
Jvaughan0• in reply to
My original post has provided quite an education on how people view treatment options. I don't have any answers yet, but insight and knowledge do help. This brotherhood is amazing.
• in reply toJvaughan0
You’ll do what’s best for you .. every guy that is undetectable awaits the inevitable rise .. mama Mia! 😳
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