No prostate, biochemical failure, salvage radiation, rising PSA, what's a guy to do?
Zero to 0.1= three months, 0.1 to 0.2= 3 months, 0.2 to 0.4= 3 months, 0.4 to 0.5= 3 months. This is where I am today 0.5.
My medical oncologist says start ADT now as I have no prostate. I'm not sure the logic of this (an the MO had no time to explain it). Maybe all PSA is cancer without prostate gland, whereas with prostate, at least some of PSA is from normal cells?
My radiation oncologist says start ADT sometime after 2.0 as studies say no improvement with OS whether start immediately or waiting. But, he would do imaging at 2.0, if not results, then wait some more. That means developing metastases before starting ADT (I don't like that idea).
Any thoughts?
Thanks ahead of time,
Craig
You know what I am finding difficult to accept (and you all have been through this) is actually taking the ADT "step". Up until now I have been "normal" (even with RP and Radiation and all the shit that comes with it). ADT is change forever.
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I would start hormonal therapy asap. Since you do not have a prostate, the only source for PSA is the cancer. Why wait until it becomes more established?
Note, there are newer studies indicating improved long term outcomes for starting ADT sooner than later, but it is not yet settled.
I'm not sure when to start ADT but here are some considerations:
First, I agree with Dr_WHO, without a prostate your PSA is definitely coming from cancer. I don't remember the numbers but, as I recall, there is only a tiny amount of PSA, well less than 0.1 ng/ml that comes from any source other than prostate tissue. Unless you have a heart attack or get hit by a bus before your PCa gets really advanced, you WILL eventually need treatment and ADT is, currently, still the first choice.
Second, as for metastases, you've probably already got them. Your prostate is gone, the region around your prostate has been radiated. If your PSA is rising, it most likely is coming from some other place in your body. The scans just aren't able to detect the tiny amounts of metastatic cancer that you've got.
Third, I think that, in general, early treatment works better and longer than late treatment. I can think of possible reasons why that may be true, and possible reasons why it may be false. I have no doubt at all that it's true for really large amounts of cancer vs really small amounts, but I don't know how far down that extends to comparing very small amounts of cancer with tiny amounts. But from the point of view of better cancer control and longer survival, earlier treatment seems more conservative than later treatment.
On the other hand, treatment has side effects. From the point of view of minimizing side effects, later treatment is more conservative. Side effects that I experienced from ADT included total loss of interest in sex (though it was still possible for me to have sex if I were determined to do it - and I was determined, even in the face of loss of interest), loss of energy and strength (counteracted to a very useful degree with exercise), and hot flushes.
So what should a person do?
I think it's a personal choice. I would not go too long before starting, but I don't know how long is too long. If I cared most about survival, I'd start now. If I cared most about avoiding the side effects, I'd hold off, maybe to PSA > 2.0, or even 4, 10, or 20, depending on how adamant I was about hating the side effects and how lucky I felt (having had surgery and radiation and now still seeing a recurrence, do you feel lucky?)
Here's my suggestion. Start now. If you really hate the side effects, stay on for a year, or whatever and, if you qualify, go to intermittent therapy. Also consider combination therapies - ADT + chemotherapy, or ADT + Provenge or other immunotherapy. If you're very lucky, you might even win yourself a long term remission from the combo that enables you to get off treatment for a long time. But read the data first to find out if the people getting good responses to combo therapy have your disease characteristics (Gleason score, PSA velocity, maybe others), or do your characteristics match those of people who get little benefit from combo therapy?
Trying to navigate your way through all this is a real bitch. If your high school biology class made you want to run for home, you may want to just turn the decision over to a doctor and take his advice. That can work if it's a good doctor. Or it can fail.
Thank you for the excellent coverage of the situation and suggestions.
When I saw my Medical Oncologist (for the first time) , she was adamant that I start Lupron now, then go off at 9 months (numbers properly low). I asked about CAB and she said she wanted to save Casodex for future need. It was a surprise, as my radiologist wanted me to wait until 2.0 then do imaging. That seems standard for those with irradiated, but intact, prostates. So, in place right now is imaging, then ADT monotherapy for 9 months.
A "curve on the ball" is a phase 2 clinical trial 15-C-0075 by NIH using a vaccine to try to slow PSA rise. I would have a 66% chance of getting the real vaccine. At the time I contacted them, I was operating on the assumption a rising PSA to 2.0 (or greater) was not risky.
Here's another consideration. If you wait until the PSA reaches 2 or a bit higher, it is possible that a nuclear scan, e.g., the C-11 choline scan at the Mayo Clinic, will show that you only have one or a very few metastases and these can be treated with radiation or surgery with curative intent. It's a long shot, but it's possible. If you get on ADT now, that doesn't forbid future use of a scan but delays it since the ADT will suppress any cancer that might otherwise have shown up on the scan. It's something to discuss with a qualified oncologist. I have no idea whether it's a good thing to do or not.
On the question of Casodex, that's not what I was thinking of by combination therapy, though it is one kind of combination when used with Lupron, Zoladex, or Eligard. I was thinking of a combination of two different types of treatment, e.g., one hormone therapy that works by suppressing testosterone creation or uptake in tumor cells, and one chemotherapy that works by killing rapidly dividing cells (which is why hair loss is common), or ADT + immunotherapy like Provenge. Google for the "chaarted" and "stampede" clinical trials for more on ADT + chemo. However, having said that, there are medical oncologists who believe that the cancer should be hit early with ADT2 or ADT3 and believe that, for some patients, it provides greater survival. Most med oncs don't agree with that. It's a field in which opinions are very much in flux.
If your first ADT treatment is Lupron, an LHRH agonist that overstimulates the production of T until the testicles give up and stop producing it, Casodex is customarily given first for a week or two to suppress the effects of the "testosterone flare" that such drugs cause. I assume that skipping that is not what the doc meant when she said she didn't plan to use Casodex at this time.
My RO also has me waiting til PSA reaches 2.0 to get a scan to find mets. I've had RP and SRT (twice) and ADT (twice). PSA went from .03 to .05 to 1.1 to 1.3 monthly so doubling rate has at least declined.
Thanks. It is becoming clear there is a pattern here. ROs wait until 2.0 then image, MOs stick you at 0.4 or less. My RO said studies showed it didn't matter much regarding OS if one waited. But the TOAD trial says there is an advantage if you do immediate (91% vs 86%). But TOAD was only 293 guys.
It's a long shot, but should not be ignored with such low psa values: that is that the surgeon left a small bit of prostate tissue, maybe with cancer in it. AND the radiation oncologist did not adequately radiate the prostate bed. I admit such a double whammy is unlikely, but it needs to be in the thought process loop. How would it change your thinking/planning? Not sure.
Thanks, Herb1, I had thought of the prostate bed with cancer left in it and radiation but not killing the cancer. I hadn't considered some prostate tissue being left, but it is a possibility.
At my Dx I was told my PC was advanced (locally as it turned out) aggressive and well established. My attitude was (still is) if I have an aggressive cancer I want to hit it with a big club, not a little club. had casodex to lower PSA - working - and now on lupron injections (for two years) Both ideas in treatment as needed by urologist not me. Waiting for radiation treatments and then I guess wait and see when (not if) it returns. I have been told it won't be "cured" but will be "controlled". As all of us do, we wish for long term "control". IN time chemo may be on my horizon but not now. Personal choices abound for us all and are varied for us all - I have three sons, am divorced would rather live for many more years than worry about ED and being active in that regard, for me not a high priority right now. Maybe after treatment renders me undetectable and "stable" my priorities may change in regard to choices. A friend when Dx with pancreatic cancer pushed for chemo after his surgery though it was not recommended at the time. His attitude was hit it hard to knock the shit out of it. Fortunately he is in his 6th year of survival and going full speed ahead with life so far so good. I hope we all are able to go full speed ahead with life while living with the crap of PC.
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