I've been on Zoladex implants for coming up to 4 years in February.
I plan to stop ADT next time when it's due, as my PSA is always "undetectable" and it's been 4 years of physical and mental torment for me (the side effects). I think that enough is enough now.
Does anyone have advice on the best ways to keep an eye on any re-occurence?
Is PSA enough?
What else can I monitor, to stop the PCa from sneaking up on me?
Any scans? How often?
I welcome your views and suggestions.
Nick
For me, I typically get a PSA test every 3 to 4 months after stopping ADT, along with a testosterone test. The T level test is important because unless you know your T level you don’t really know if you’re in a “remission” or your PSA is still low because your T level hasn’t started rising yet. You can be lulled into a false sense of security if you don’t know your T level. My T level typically doesn’t start rising until 4-8 months after ADT ends, and then comes back up to a normal level.
Once my PSA starts rising to around 1.0 or higher my MO will order new imaging - bone and CT scans or, more recently, PSMA scans. Based on scan results we will decide on the next phase of treatment.
That sounds good. Have you had to resume ADT (or any other treatment?) or have you been able to stay off it since stopping the first time?
I’ve had to resume ADT four times, though I only have the first three times in my profile. Once I have my MO appt next week I’ll update my profile then when I hopefully know what’s what. Rather than stating everything here you can look at my profile for the details. In summary I restarted lupron each time when my T level started rising. That immediately caused my PSA to plummet. After the first ADT vacation I also had 20 rounds of RT. It seems my PCa is quite sensitive to my T level.
Thanks. 👍
I‘m also stopping Lupron now. I’ll check my PSA & Testo all three months. At this time I also check all other blood values. Once a year my doctor does a PSMA/Pet CT.
Thanks. I'll see what my RO is prepared to offer as far as scans are concerned. We have a phone consult lined up for Friday.
Try hard! My doctor says, even with undetectable PSA you can compare the scans over the years and check, if & where something possibly develops. Fingers crossed.
Will do. Very interesting. Thanks.
Interesting. So your PSA rise always, and only, follows your T rise?
Can't PSA rise with undetectable T? Are you just rolling the dice- however the odds lean favorably.
I've been on ADT for over 5 years (Lupron only), so always looking for feedback from folks who take breaks.
Me too. I'm looking forward to coming off it. Especially the hot flushes and the lack of strength and energy.
Yes, when one becomes castrate resistant PSA can rise when the T level is low.
I’ve always assumed that my ADT vacations are temporary and eventually my PSA will start rising and I’ll to resume ADT or some other treatment. So, I guess I am indeed rolling the dice. So far it’s worked out. It’s given me breaks from ADT and more importantly, for me at least, the ADT side effects with seemingly no adverse impacts. I also have no illusions that at some point ADT vacations will no longer be a viable option but while they are I’ll keep taking them.
Got it. Yes, getting relief from no T would certainly be nice!
I want my M"T"V
Every 3 months, I see my MO, and every time, I want say Im stoping ADT.
But will wait til the 3 year mark.😂
Three years is the number my RO is happy with. We had our teleconsult today...
I'm going off Zoladex, so no more implants and we'll measure PSA &T every 3 months and then less-frequently the year later once it's settled down.
If PSA goes up, we just go back on the ADT. 👍😉
If you do it, please keep us posted. We're all clinical trials of ONE.
include phytoestrogens into your diet - Soya tofu tempeh green tea etc
Phytoestrogens act like ADT so even though you are giving up ADT you are still blocking testosterone / DHT when you have a phytoestrogen rich diet
Interesting ideas. Thanks. However, my plan is to let my testosterone return to normal levels and then monitor for any PCa issues.
As I am in the waiting game to see the effectiveness of my radiation therapy and have come off ADT, my RO explained to me since I am now in the low range of testosterone there is no real need to monitor T anymore.
She said the critical factor is how PSA behalves from this point out. Once T hits that magic 250 range you have a supply of it that the cancer can use. At least that is my understanding of what she said.
Interesting. I suspect different docs will answer this differently, even an RO and an MO on the same team.
I'm under the impression that PSA can rise and the cancer can grow under many individualistic situations: undetectable T, low T, medium T, high T, etc.
Am I just flat wrong on that?
The key word is CAN, not WILL. Each patient's experience is different. We all know that PSA can rise even while on ADT and T is undetectable.
And a question arises: if you stop ADT and the PSA rises, have you done more harm than staying on ADT?
That's the question I'll be asking my RO. 👍
More interesting information. It's amazing what's out there. I will be able to have a good conversation with my RO tomorrow.
I don't disagree, although it's a pretty weak effect, isn't it? Or no?
There are some really strong phytoestrogens Wild Yam for example is very strong I use phytoestrogens for menopause I use aguaje which is very strong I only need a bit I know when my estrogen is low when I get arthritis pain
They did scientific studies on estrogen patches which successfully blocked testosterone
Discussed here:
prostatecancer.news/2023/04...
Thanks T/A. Seems like I may have to wait a long time to get over this. Oh well, I'll just have to be patient.
You have two choices. First, keep on ADT and when your PSA goes up, then get a scan. Second is to stop the ADT until your PSA rises to a point where a scan will be useful and get a scan.
Good luck.
passed this onto several buddies with PC. Great info thanks as always.
I and most of us know how you feel. I don't have an answer to your question but after reading or trying to read the article in the link provided above. I am more tired than ever, It is not my purpose to bring negativity to this forum. Part of the closing paragraph on such article reads 'If you are feeling lost and confused after reading all of the above considerations about iADT, you are not alone' the cliche 'you are not alone' is not applicable to me. I am alone, physically alone, and even though on my fighting against disease I endure and do what I am told to so. I am tired. On this precise moment I am at the waiting room of the hospital to get an MRI done. Because I have been getting a back pain that's getting worse by the minute. MO agrees with me that it probably is one of the tumors on the rib cage that is starting to act up and for witch we will probably have to do focal radiation to try to diminish the pain.
So you see, I have been on Lupron for one year this time. Previously I had it for two years and got it interrupted not by choice, for two years. In that time, my PC is now advanced, with innumerable metastasis from head to toe. With Lupron PSA has being doubling, three four times in the last five months. I've decided, No, I am not going to take any other treatments. I can't stand the SEs all I want is to get pain management until is time for me to go.
So sorry to hear about your pain and troubles. Best of luck mate. 👍
I've been on Eligard for 5 years. PSA undetectable. Last (6 month) injection 9 months ago. If/when PSA rises, pet scan & then back to Eligard, I guess. 😉Best luck to us all.
Because scans were clear for two consecutive years, I temporarily stopped Lupron injections at the suggestion of my oncologist. Test PSA and testosterone every 3 months. So far, the ADT side effects continue and testosterone is low (no surprise).
We didn't discuss under what circumstances to restart Lupron but IMHO, you should always make decisions on what gives you the best long-term chance of survival.
Yes. 🙂
You had aggressive cancer, with the G9 and extracapsular extension, seminal vesicle invasion and a pelvic node. But you also did very good (aggressive) primary radiation treatment. Presume the pelvic lymph nodes were also treated. And you have had long term adjuvant ADT. Excellent. So you might well be cured of it. Only time will tell but you should be able to stop the ADT and let testosterone recover. Monitor PSA every 3 months (and T) and time will tell whether or not biochemical recurrence (return and rising PSA). PSMA PET scan will likely not show anything with undetectable PSA at this time. Good luck.
Thank you. Here's to a happy future, living life to the max. 😉👍
You're a bus driver....... and you're asking us what's the next stop? (I'd like to say Sheepshead bay but that's really American Brooklyn NYC humor).
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 01/17/2024 8:15 PM EST
Thanks j-o-h-n. 😄
I stopped by ADT after 21 months total. I also wondered how to proceed after this treatment. One aspect of recovery is the return of testosterone. in 20 to 30% of men this never happens. Unfortunately, it’s something we have to anticipate and that will hopefully not happen. But testosterone is really important to your health. As it returned for me I noticed that I was healthier. But you also worry about its effect on the return of prostate cancer.
…this study helps to understand the interaction between continuous and intermittent ADT treatment. If my PSA returns, I will go on intermittent treatment. It appears that the odds favor you and you are no worse off. The benefit of intermittent treatment is that you have some testosterone, which is very important for men’s health.
healthunlocked.com/active-s...
all the best.
Thanks RM. 👍
I don’t know anything other than periodic psa and T tests
Thanks. Yes, that's the plan. 👍
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