I had a consult with one of my MOs a few weeks ago, and he has new ideas about how I should be treated. He would like to see me quit Lupron, which I've been on for ~32 months, let my testosterone rise (if it will), see what happens to my PSA, then do either 18-F Axumin or 68-Ga PSMA scans to locate any disease. Then zap anything that shows up with radiation. He calls it "find and zap." I think he can do the fluorine 18 scan locally, but I would have to travel and pay for for the gallium PET scan, which is not yet approved. He does not like to see patients on ADT for more than 3 years, mostly because of bone density issues, I think. He would also like to kill the cancer if/where we find it. MD Anderson's plan appears to be to keep me on Lupron forever and react to changes when they occur. My side effects to Lupron have not been severe.
While I can see the logic in his proactive plan, I'm a little hesitant, having the "if it ain't broke, don't fix it" attitude. I am castrate sensitive metastatic, and have had undetectable PSA and clear CT and bone scans for two years. See my profile for further details. I am due for another Lupron shot next month, and realize that, having been on it for over 30 months, testosterone recovery would be slow. I wonder what the advantage would be over just waiting until I become castrate resistant and then putting the new plan into motion. I just hate to mess with the "undetectable" label. The thoughts and counsel of this august group would be greatly appreciated.
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Garbonzeaux
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Bold plan and has a lot of risk. The amount of risk depends on your disease status, aggressiveness, genetics, etc. Most of all, how confident are you in the ability of available scans and art of ROs to timely catch growing mets and not miss them spreading? I see you had RP and chemo in the past. No other current treatments other than Lupron?
While that MO does not like to see patients on ADT for more than 3 years perhaps because of bone density issues, there may be another reason: you are still castrate sensitive metastatic, and perhaps an advantage (over just waiting) would be that an ADT-vaca might delay progression to becoming castrate resistant.
I am not saying this is necessarily the case, just that it is one school of thought (from proponents of IADT as a modality preferred over CADT). It has been put forth most forcefully by Dr. Bob Leibowitz, who even suggests TRT for some patients after a course of ADT, rather than just letting T-levels try to recover on their own. (Have you thought about BAT, or mentioned it to your docs?)
We know that ADT is essentially the artificial imposition of one (less severe/lethal) disease, hypogonadism, as a means to treat but not cure another (more severe/lethal) disease, PC. The disease of hypogonadism has potential for obvious visible and immediate effects (on bone, muscle, energy, libido, etc.), but might it have potential for other less visible and more distant consequences?
So while immediate side effects to Lupron have not been severe for you so far, might a longer term "side effect" of staying on it (indefinitely) be that you ultimately progress to a form of cancer that is less easily treated, and potentially more lethal? I don't know the answer, and am not suggesting that you make a decision based on that question alone, but that question might be a starting point for further discussions with your MOs (and others).
Many thanks for your insightful comments. I have discussed BAT with several Drs, but nobody seems to think it would be a good thing for me at this point.
Yes, that's not surprising... sometimes I get the feeling that most MOs feel that BAT wouldn't be a good thing for ANYbody, at ANY point. Surely it is good for some, but seems really hard to know for whom.
That of course makes it understandably hard to pursue or recommend, other than on theory or logic. How long the cycles should last, and which patients will respond better or worse, seems still largely guesswork. I feel like it may be decades before it enters mainstream standards of care, if it indeed ever does.
You could change to intermittent ADT now. This is mentioned in the guidelines, so not much risk doing that. During the break the PSA value will rise and allow to locate the mets with a PSMA PET/CT. Then zap them with e.g. SBRT radiation. This will probably cause a long break. If not, restart Lupron as planned at the start of the intermittent ADT.
I am doing that, my break lasts for four years now and counting.
I think he doesn't really understand what metastases are or he would never recommend anything as dangerous as that. If we know anything, we know that you have to treat what you can't see as well as what you can see. Even the best PSMA PET scans can only detect metastases bigger than 4 mm. What about all the sites of cancer smaller than that? There is also a correlation between size and number of metastases and PSA - reducing their size and number will reduce PSA, but so what? PSA is not cancer, and treating PSA is not the same as treating the cancer.
So what is the point of allowing the cancer to grow just so that the metastases become big enough to see on a PET scan? If he wants to zap a few detectable metastases, where it is safe to do so, there may or may not be any benefit, but I can't think of a good reason not to. But to give up on systemic therapy has no foundation in medical science.
In addition, the "find and zap" approach has not been shown to be curative or have any benefit for that matter, although, as I found out, insurance usually pays for it. After a while the mets might return in previously irradiated areas and, as my RO told me, "you'll be losing part of your rectum if I irradiate any additional areas."
So, you might ask, what about simply surgically removing the mets? I asked about this, too. Lymphedema could be the result of removing too many lymph nodes.
Bottom line: If the disease is systemic then systemic treatments, not "spot" treatments are called for.
While the "find and zap" approach has not been shown to be curative, neither has ADT itself, really. Certainly when disease is systemic then systemic treatments are called for, but that does not mean "spot" treatments cannot be helpful IN ADDITION to systemic treatment.
I think the bigger question still to be answered is, can either CADT or IADT shown to be superior to the other in some men and, if so, which men, and why?
I don't want to speak for tallguy2, but perhaps a better way of phrasing what he meant is that metastasis-directed therapy has not been shown to slow radiological progression or increase survival. Certainly, combination ADT has been shown to accomplish both.
I'm not sure what you mean by "superior," but iADT has a role in men who want to increase QOL in the short term. That is all it does.
By "superior" I meant in either prolonging life or delaying progression to a more problematic state of ill-health. I don't see compelling evidence of a clear superiority of either mode of ADT, whether CADT or IADT.
Could IADT be non-inferior, or even superior for some men?
We know that long-term hormonal therapy can tend to increase clotting risk, LDL cholesterol, body fat, triglycerides, and insulin resistance while decreasing lean body mass and glucose tolerance and prolonging the QTc interval. Could going off ADT for a few years help lessen the severity of these effects?
We know that long-term hormonal therapy often leads to a progression from hormone-resistant disease to hormone-refractory disease. Could going off ADT for a few years help lengthen (or even prevent) that progression?
So there are possible benefits in addition to QoL. You cannot definitively say that better QoL is all IADT possibly does, and that it has no other role; you can only say that is all it is proven to do.
There have been several trials. From the Hussain trial "in patients with metastatic hormone-sensitive prostate cancer, a 20% relative increase in the risk of death with intermittent therapy as compared with continuous therapy cannot be ruled out." In subgroup analysis, Patients with minimal disease survived longer with continous ADT.
No trials of iADT vs cADT (there have been several) showed any survival benefit for iADT, nor has it lengthened time to castration resistance. Whatever health benefits may accrue from vacations does NOT lengthen survival, so who cares?
Are you saying that living a certain number of years in poor health is just as good as living the same number of years in better health? I'm not sure that is just a QoL issue. At the very least, it's more expensive!
Many studies like the one you cite say "Our findings were statistically inconclusive." So again, I am not claiming a superiority for IADT, I am just claiming that biological rationales for using it exist, and it is not proven that those rationales are never in play and are not ever worthy of consideration.
Some studies simply say we need more studies, but in at least one "investigators observed a substantially lower rate of progression to androgen independence in the intermittent arm."
When you think about it, the primary path to a progression to androgen independence is ANY use of ADT at all, because otherwise how would the cancer ever become resistant? There is an obvious advantage to killing cancer cells in one's body, regardless of their androgen sensitivity. But there is also an obvious disadvantage to leaving ONLY resistant cancer cells who might multiply in a more unabated fashion and evolve to become more lethal.
This idea of "less-is-better" is a simple population ecology observation that has been mathematically applied in control efforts in all sorts of ecosystems (pesticides, herbicides, and even in "adaptive" PC chemotherapy by Bob Gattenby). Its potential application in ADT has yet to be proven or disproven as a useful approach.
I have no doubt that for SOME men, going off of ADT may in fact end up leading to a shorter life. But I expect it is also true that in SOME men, there might be a survival benefit in addition to QoL benefits.
So looking at one number from statistical aggregates -- median survival years -- is never going to answer the question of which individuals might truly benefit from pursuing one therapy over the other, or whether certain forms of IADT are better than other forms. ("Continuous" is easy enough to define singularly, whereas "intermittent" therapy seems much harder to pin down.)
The type of cancer might matter, the "duration of vacation" might matter, and so might what men DO (so far as other therapies) during or after their vacations.
One thing that seems clear to me is that many newer therapies, and the clinical trials exploring them, are available mostly to men who have proceed to a disease state that can be defined as "castrate-resistant" or "castrate-refractory." So the most promising follow-up care might go disproportionately to men who pursue CADT, and that certainly might give them a survival benefit. These more advance treatment modalities are reserved for only the men who have been failed by the prevailing standard of care.
Study was published in 2013. Tall Allen provided the link to the paper. One of my MOs seems to think that 3 yrs should be the max. Another appears to want to keep my on Lupron forever with prolia. I'm not too sure what to think, hence my questions to this group.
"We know that long-term hormonal therapy can tend to increase clotting risk, LDL cholesterol, body fat, triglycerides,"
I can attest to all of that. After 3 years on various ADT my Triglycerides and bad cholesterol went through the roof, I gained about 25 lbs, and started having a variety of heart related issues. Turns out my left corinary is now over 70% blocked. I stopped all ADT in October for fear of dying from a heart attack rather than cancer. Luckily my PSA is still very low, so hopfully we have some time to figure out what to do when it comes back up.
Yes, this is something I am watching closely. So far so good with me. All my bloodwork looks OK so far, just borderline anemic. I am trying to keep the rest under control as much as possible with diet and exercise. I have actually lost 25 lbs since starting to take Lupron, but of course a fair amount of that may be muscle mass. Still have the belly, and BMI puts me squarely in the middle of the "overweight" range (6ft nothing; 198 lbs).
Its good that you are keeping tabs on your triglycerides and cholesteral. My doctors were so busy looking at cancer stuff, we didnt check mine until I started having heart issues.
Thank you, Tall_Allen, that's exactly what I meant.
And I add that I am guilty as charged...I went for a second round of radiation despite the lack of evidence that it is beneficial. And sure enough, 6 months later those mets were "resolved" but 3 new ones took their place.
I'm sorry to hear that. And i am incredibly sympathetic to the attempt. It is so hard to just sit there and do nothing while detected metastases increase. I feel the same way about supplements - how can one sit there and not take them if there's even a chance they might help? It feels better to do something than to throw ones hands in the air and resign oneself to no control over what is happening in one's own body. The only things I do feel strongly about is (1) safety and (2) doing whatever Hail Mary play only after or in addition to the SOC (which is really very good). Safety of radiation to the thorax and digestive tract can be dicey. And safety/interaction effects of many supplements are unknown. I've seen several supplements known to be toxic touted as treatments on this site.
Agreed. Thanks for your comments. Sometimes emotions take over, even for a very analytical guy like me. And when insurance pays for it and the proposed treatment can do no harm (in my case my RO was targeting an area not previous irradiated) it is easy to say “yes.”
If we ask what the point is of allowing the cancer to grow just so that the metastases become big enough to see, shouldn't we ask that of the doctors who insist on initial local treatment (to the prostate) ONLY, whether radiation or RP?
Because a sizeable number of men who are told they have cancer "confined to the prostate" really don't. These men have micro-metastatic cancer. If we went looking for it with tools that could find it, we would find it outside the prostate. Instead, we wait until the proposed "cure" fails. Only THEN do we start systemic treatment.
Before I knew I had VISIBLE (w/bone scan) mets, when my Uro suggested RP as a cure for my 3+4=7 PSA 20 PC, I thought... well, I thought he doesn't really understand what metastases are or he would never recommend anything as dangerous as that. Because even if my scan had come up clean, I thought it was quite likely that cancer was in my bones already (I thought that because I had read what Anthony Horan and David Byar had written about the intrinsically metastatic nature of PC).
My doc was more alarmed and surprised at my scan than I was! My reaction was, well of course I have bone mets, with a PSA of 20. Why wouldn't I? If they had not been visible on the scan, I still would have assumed I already likely had SOME cancer cells somewhere in my bones. It's the way PC generally works. This has been known for decades, but for some reason is not common knowledge.
If we know that you have to treat what you can't see as well as what you can see, I would think most men with intermediate to high-risk "localized" cancer should give priority to systemic treatment over local treatment. I was advised the opposite, upon initial diagnosis (before scans).
I agree, treating PSA is not the same as treating the cancer. But from what I can tell, a lot of oncologists are really focused primarily on treating PSA as a proxy for cancer, and a lot of urologists are really focused on treating only the primary tumor (rather than the cancer as a whole). So I feel like I could extrapolate your critique of this one doc to well over half of the profession.
The default assumption should be, PC is a systemic disease. But to take an ADT vaca is not necessarily "to give up on systemic therapy" and I'm not sure why you would want to characterize it that way. It is simply a systemic therapy that takes a different approach from the status quo. Neither approach has a proven overall survival advantage for any given man, but the vaca has a demonstrable QoL advantage for many men.
If you mean that sometimes we think it is localized when it has already metastasized, that does sometimes happen. But that is why patients are categorized into risk strata. It almost never happens in "low-risk men," but it is more likely to happen in high-risk men. There are nomograms that show the probability.
In some ways, there are two localized categories - favorable risk (low and favorable intermediate risk) and unfavorable risk (unfavorable intermediate risk and high risk). I draw the dividing line there because unfavorable risk, when treated with radiation, often does include systemic hormone therapy.
I haven't done a survey of doctors ("over half the profession" sounds extreme to me), but the ones I've met certainly understand that treating PSA is not the same as treating the cancer. They all do risk stratification.
Garbanzeaux is in the category (few metastases) that doesn't seem to survive as long with iADT as they do with continuous ADT.
What are the studies that point to a seeming inferiority of IADT for oligometastatic PC? I was unaware of any, as nearly everything I've come across seems inconclusive.
That is certainly incorrect. All systemic therapy (chemo, hormonal, immunotherapy, radiopharmaceuticals) kill cancer cells one cannot possibly see on imaging.
Dr. Weise and Dr. Stephan probably meant is, you can only treat cancer with SBRT or Lu177 if you can see it with a PSMA PET/CT. You will not get an Lu177 cycle if the PSMA PET/CT does not show anything.
Does Garbonzeaux situation applies to my situation also, TA?
I have PSADT of about 18 months with psa=.86 currently, never on any medication. I did one psma test a year ago with no Mets. I would like to do another one next month and try this approach of zapping. Not sure which way is the best, start adt now or find and zap?
No his situation is different from yours - he is detectably metastatic. There is no credible evidence that zapping metastases accomplishes anything, while there is credible evidence that early ADT accomplishes something for men with detectable metastases. For men like yourself, with recurrent disease and low PSADT, there may be an advantage to early ADT, but that is arguable.
Initial biopsy showed 4 cores positive (of 12), having scores 3+3(10% of specimen), 3+3(10%), 5+4(30%) and 5+5(10%), all adenocarcinoma. Total prostate tissue involved by tumor 5%. Intraductal carcinoma not identified.
Surgical pathology report:
Metastatic carcinoma in 2 of 24 lymph nodes mentioned
Microscopic bladder neck invasion
seminal vesicles free of tumor
Margin of resection free of tumor
Perineural invasion present
No lymphovascular invasion identified
Dominant tumor focus invades focally thick smooth muscle fibers at base of prostate
Two nondominant tumor foci confined to prostate
Intermittent therapy is what you are describing and my doc at md Anderson just put me on it. Now the hunt and find and kill idea I like but I don’t think they have anyway to kill it. Yes they can find it if your psa is high enough.
In my case, I was on Lupron for 10 years before a couple of mets showed on my right hip. Went on Zytiga--which I'm still on---then my onc decided to go ahead and zap the spots because because was only holding them at bay, not eradicating them. so far so --good--PSA's lower than it has been in a while and no new spots. so my advice--stay the course--it will either show itself or it won't--
Understood, thanks. I still have a metal token from the NYC subway system from the last time I rode it. I think it says 15 cents, but of course I didn't have APC way back then
I did same. See my profile. Zapped mets With radiation when found by imaging. Never has a recurrence. But I may be lucky. Stage 4 with oligomets. I’ve been on estradiol for over a year. Still zero.
Treatment plan I’m going through is based on clinical research done by my surgeon and a group of others trying this new option. He said they’ll be publishing soon. My PSA began to slowly rise two years out from RP in Dec 2017. When I hit a .3 last fall I got into a a G 68 PSMA PET trial at UCSF in SanFran. It found two 6 mm spots, each on a lymph node, and surgery is this coming Thursday to remove them. Surgeon plans to take out nearby nodes and tissue and there is a small chance of getting it all. The plan going forward is continued monitoring of my PSA level and if it rises I’ll have another G68 scan. The plan is to try and take care of things surgically, saving radiation and ADT therapy options for the future. Both the RO I consulted with about SBRT and my surgeon said I’ve probably added years to my life.
I have seen no mention of dropping ADT and switching to one of the 2nd generation anti-androgens(Xtandi, Erleada, Nubeqa), mono-therapies thereby eliminating a raft of ADT caused morbidities whilst continuing that assassination of systemic and hidden tumors.
I have seen no trials that suggest that any of these drugs given with or without Lupron have have an OS survival advantage either way. Perhaps they exist and I have missed them. I am aware that all of these drugs were approve on ly when trialed would ADT,,,,however none were trialed for FDA approval in a stand-alone monotherapy environment.
I have seen others including myself who have tried anti androgen mono therapy in the course of their treatment increase overall survival
I’m in the same boat . My mo however is not making any changes . No one wants to rock the boat . I’m on that test adt drug tak -700... Your dr is smart .. I understand your point too.
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Finding a good Medical Team
New here, glad to find this group
effectiveness of zapping what is seen on PSMA scan
Need help finding studies
