Gleason 9. Local Lymph node involvement. I still have my prostate. Had HD Brachy and did radiation to my prostate and lymph nodes back in 2019.
MY MO suggests to continue to watch the PSA and see if it levels out and if not then scan in a couple of months and not to panic.
My PSA was .014 back in August when I started my vacation.
I was on ADT for 2 1/2 years before my first vacation.
Thoughts? Hate this
You have a doubling rate of about 30 days.
Time to start scheduling your scans and second opinions.
You are probably going to be selecting a new course of treatment in the next few months.
You still have a prostate. Stopped ADT, T is well above castration. Nothing to worry unless PSA continues to increase and goes 2 or more above nadir.
thx all..... hate this ride
Hello, I think your vacation is over. Time to get back on ADT.
I’m afraid your right. Hate it
Hello, I have been on ADT (Zoladex) for nearly nine years without a vacation. Do I like it? Not particularly but I like being on this side of the grass much better than being under it. Your tolerance for ADT drugs has much to do with your age and mental outlook. I am 76 and many of my friends are in far worse shape than I am.
I am a young 57. Sad that I was dx 3 years ago
I tolerated 2 1/2 years of ADT easily
I’d take 9 years on the first line of defense any day
Stay healthy
How do you feel being on vacation? I think it's a good idea to set a benchmark for yourself about when vacations should end - it can be a specific PSA, a PSA doubling time, a length of time with normal testosterone, progression on a scan, or some combination of those. I think setting numerical benchmarks will allay your anxiety over vacations.
Thank for your thoughtful response. I feel great and love being off of ADT. My MO and I have a call on Tuesday to bench mark my tolerance before we make the next step in this Terrible journey.
Keep u posted
Hello Allen,
Please see my reply to Longterm101. If you agree with it, perhaps you can recommend a specific type of scan and a range of PSA values that might indicate that a scan of that type would likely find cancer if it's present.
Alan
Maybe I'm being misled by his use of the term "vacation." The term "vacation" is usually used to denote a break for QOL relief when someone is on lifelong ADT.
Longterm101 said he'd been on ADT for 2 ½ yrs before his first vacation. But looking at when he had brachy boost therapy (in 2019) the previous ADT may have been part of the adjuvant ADT he took to improve the results of the radiation.
OR, he may have had a clinical recurrence (detected on a scan?) after his radiation, for which he started lifelong ADT and took a break in August.
I'm not sure which is the case., but you are probably right. There's nothing in his profile. If he has only been on adjuvant ADT, you are exactly right and his PSA rise is what is expected as his testosterone recovers. If he confirms that his only ADT was adjuvant ADT and he is not really on a "vacation," no further action is called for until his PSA rises to 2.2.
Thanks for reading it more closely than I did.
With a prostate and off ADT, T approaching 400, watch and wait till PSA 2 or 3 your choice,, then back to the dreaded ADT again... Life Is Good, doubling time of 35 days is not....
Wait till 10 PSA. I think that’s what I’m going to do. Maybe play some whack-a-mole. Anything to delay the dreaded ADT
Hello Longterm101,
It's hard to tell what your rising PSA really means or where it will go in the future. To begin with, when you've been on ADT, and especially when you've been on it for as long as you have, the effects do not just stop when the nominal 3 (or whatever) months duration of your last dose expires. You may still have some effects 2, 3, 4 ... even to 6 or more months after the expiration of the last dose. That could very well contribute to a steady rise of PSA rather than a smooth leveling.
Secondly, your treatment can also contribute to PSA "bounces". I was treated with two applications of HDR brachytherapy with neoadjuvant ADT (Lupron) and five weeks of EBRT between the two HDR doses. I had 4 months of ADT, one one month injection and one 3 months injection. For several months after the expiration of the 3 months my PSA was undetectable by the crude test procedure in use where I was treated (lowest report at that facility was <0.2). Then it began to go up and then it bounced around. It hit 0.8, then 0.5, then at some point (I don't remember how many months went by) 1.8, then something below 1, then 1.2. After five years (!) it settled down to below 0.5 and stayed below there. Now, 18 years after treatment, my PSA has bounced around from a low of 0.07 to as high as 0.26. I have never gotten any treatment after my treatment in 2003-4. My radiation oncologist, a researcher at the National Cancer Institute, told me that about 30% of men getting HDR have these bounces. The worst one that he read about, IIRC, climbed into the teens before coming down again.
I don't want to give you false hopes. You may very well have prostate cancer. However, you may not know whether you do or don't if you get back on ADT without at least some indication other than a rising PSA.
I suggest you talk to your oncologist and get his opinions on what else besides PSA can be used to confirm cancer, whether he has seen bounces in other HDR patients, and how high a PSA is safe to go to without causing irreparable harm. That last one is, of course, is just going to be a (hopefully) informed opinion not a fact since people have different variations in their cancers.
As I read this and do the math this seems less like a vacation and more like a determination of the success of your initial treatment. I think Alan's point makes a lot of sense. You have no idea how you body will recover from what has been done to it in the name of "treatment".SOC is to proceed when your PSA hits 2 points above your nadir. That's 2.014 but lets round it to 2. Your response to initial treatment will plot a different course than a decision to end a "vacation". These are terms I realized get bandied about on this forum frequently but unless I am mistaken differ considerably.
This is how I see things and I am currently off ADT to see the results of my initial treatment which was also radiation. I never had a usPSA test so my nadir is <.04.
I know I will have the same feelings you do when my PSA rises but even the best scans can only show so much at .7. If its time to commit to a life on ADT Dr Patrick Walsh mentions in his book that waiting to take ADT until mets are obvious and taking it early will likely lead to the hitting CRPC at the same time. Maybe he's wrong, I certainly don't know and I suspect it differs for all of us. Maybe you can learn and do what Nal does and take vacations every few months. I don't know anything for sure as I am learning as I go as your are. I hope you find an answer that works for you.
I think to put your mind at ease - you may want to talk to your oncologist about a PSMA-PET scan. That can detect things when the PSA gets >= 0.2 (according to my MO..) Of course, that's hoping that your insurance will pay for it. The FDA decision and Medicare decision have standards that must be met to qualify for coverage - but in looking quickly at your case, I believe you'd qualify at this point. If the scan gives you an all-clear, that should help settle your mind. If not - then you can start to consider what needs to be done (if anything.)
Take a look at my bio. There are some similarities.Next week meeting MO to discuss treatment.
Options as I see it:
Hormonal treatment -likely
Hormonal treatment + chemo - likely
Hormonal treatment + RT to pelvic area - not sure its possible once already radiated
PARP inhibitors - think its too soon
Some clinical trial -?
So my advice to you would be to try to get a PET/CT PSMA or Pilarify and decide according results
Best of luck
I think we are placing way too much importance on these psa readings. By the time my psa went above 4.0, which prompted a biopsy, my Gleason score was already 9. I wouldn't exactly call that early detection. We obviously need a new method to detect and monitor prostate cancer....what we currently have is unreliable and is resulting in a lot of confusion, apprehension, and probably at times even unwarranted complacency. Donate to prostate cancer research I guess and hope we live to see some new developments!
Same thing happened to me. We need a way to intercept cancer before it becomes metastatic. Waiting until the PSA hit 4.0 didn’t work for you or me. There are now MRIs available in some places to replace the biopsy.
Probably need to look at the study posted by maley on the regular prostate page. It seems to say it may not make that much difference if you go back on ADT early, so you may as well wait. check it out.
Conclusions:
Metastasis-free survival and overall survival of men with BCR who delay hormone therapy is long. This underscores the need to reevaluate when to start primary ADT in this patient population.
New to site, would appreciate any suggestions or comments.
RP medical update
Good news from visit at Mayo
