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Go for SRT or hormones for life? PSMA test?

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Posted 9/26/2018 8:01 PM (GMT 0)
I am 50 years old with recurrent prostate cancer (see signature with details below). I am at a crossroads and would very much like to hear your feedback / opinions on my situation.
I met with my radiation oncologist and medical oncologist yesterday at Sloan Kettering to discuss next steps with my recurrent cancer. My PSA went from .20 to .33 since July and I am now faced with the decision of 40 treatments of radiation to pelvis with 6 months of Lupron or just go straight to Lupron for life with no radiation. Recent MRIs showed no cancer -- apparently too microscopic to see. Questions:
1. Should I spend $7,200 to do PSMA scan to see if we can find the cancer? According to MSKCC there is about a 50% - 60% chance it will locate the cancer at my PSA level.
2. If I do PSMA: If the cancer is not found anywhere, do I go for radiation anyway (with 40% chance of success) or should I forgo radiation and go straight to Lupron for life and avoid the possible side effects of radiation?
I'm guessing some or many of you will say it's a personal choice but I would welcome that feedback or any other thoughts you might have. Thank you so much in advance for your help.
Posted 9/26/2018 8:50 PM (GMT 0)
If you skip the RT, you skip the chance for a cure and go right to palliative care (ADT and the remaining treatments when that fails).

At you PSA, all PC is microscopic, the odds of finding on a scan are low. If the scan doesn't find it, doesn't mean it's not there. It's still a bit of a guess.

The side effects of RT aren't as bad as you fear. Most have RT with just minor SEs, some get none, of course there are a few have a bad time.

In your place, I'd take the shot at a cure and do the SRT+HT and then see.

Andrew
Posted 9/26/2018 8:57 PM (GMT 0)
Yup it’s a personal choice Paul. about as personal a choice as one can be faced with.
If I was in your shoes, and I may be very different from you at my core,....

First, I would be thinking “I’m 50 years old, if I just go straight to Hormone Therapy, maybe I’ll be lucky, and it will prevent Mets and keep working for 10 years. But then I’ll be 60. Then what?

Second, yup, i would spend the money in a PSMA Scan at your level. Although I think you could get it much cheaper. Clinical trial? And I think I recall that either UCLA, UCSF or UC Irvine, is offering it at no charge right now. If it shows something that’s not in the prostate bed, then you have a reason to go straight to Lupron,

I’m 68. I thought about not doing SRT and waiting until my PSA wentvto 5, or higher, then going straight to Hormone Therapy. My PSA was .08, when I started HT. I started SRT this week. If I was your age, with your PSA, I would certainly be doing what I’m doing now. At my age, I gave serious consideration to doing nothing right now,

So it’s a personal choice, just giving you my perspective. Hope it helps.
Good luck.
Posted 9/27/2018 4:09 AM (GMT 0)
yep no bout a doubt it...the questions from newbies...do take a back seat to OT topics and/or folks with the lower gleason scores...no more OT for me...as Forum cheers...In The Shop was right...guarenballbearens…
Posted 9/27/2018 5:54 AM (GMT 0)
Motown:

You have several options open to you and, as you said, it's your decision. For convenience, I'll label the options "Option 1", "Option 2", and "The Really, Really Bad Idea."

Option 1: Tell your RO you want to pull the trigger ASAP on salvage radiation and some temporary ADT. If I were you this is probably what I'd do. It saves the expense, bother and delay of the PSMA scan and it's the only certain way to know if radiation will cure you. You will have the side effects of the radiation to deal with but, in most cases, they're pretty manageable.

Option 2: Pay for the PSMA scan and then decide. The PSMA is one of those tests that never gives good news -- it either finds mets (bad) or it doesn't find mets (inconclusive). It basically tells you how likely radiation is to fail to cure you, it tells you less about whether it will succeed. If the news is bad, then you get he bad news earlier... (hurray?) ... And the best news it can give you is that you can still try the radiation and see if it works.

The Really, Really Bad Idea: Lupron for life to avoid the radiation. Not. a. good. idea. for a guy as young as you are. Most of the side effects of radiation are short term. There are occasional longer-term problems but they are very unlikely to be as troublesome as a lifetime of androgen deprivation.
Posted 9/27/2018 9:49 AM (GMT 0)
What you have is persistent PSA. I know because I have it also. Three months after surgery, my PSA was .32; several months later it was .54

I did a lot of digging, visited or spoke to a number of urologists and RO's, including Daner Farber, Johns Hopkins, UCLA, Cleveland Clinic, and University of Miami (meh). The almost universal recommendation was SRT with six months of ADT. Lifetime ADT is crazy, especially at your young age. The side effects of radiation pale when compared to the potential ones from extended ADT. Note than the success rate of RT for persistent PSA is much higher than 40%. For me, with a 3+4G it's about 75%. With your G8 it might be a bit lower.

If you can get into a 'free' clinical trial for a PSMA scan quickly it could help, but you would have to delay the start of ADT for SRT until after the scan, so speed is of the essence. $7,200 for a scan is highway robbery!
Even if the scan locates a cancerous tumor, radiation is still the most advisable option. Below are some links for your edification:

https://pcnrv.blogspot.com/ Blog of a prostate cancer advocate/expert who used to be here.

https://clinicaltrials.gov/ct2/show/NCT03181867 The NCI scan I had...excellent, free, and very helpful.

https://pcnrv.blogspot.com/search/label/PET%2FMRI Some very detailed info on available scans.

All choices in life are personal, and nothing is certain with this maddening disease. Good luck and keep us posted.

Post Edited (garyi) : 9/27/2018 3:52:33 AM (GMT-6)

Posted 9/27/2018 11:14 AM (GMT 0)
I've not been on ADT, but from what I read here, it's better to avoid it. Especially for life. I have had SRT and it was not a big deal.
Posted 9/27/2018 1:37 PM (GMT 0)
Paul,
The risks from SRT are minimal. Yes, some people do have bad SE's but those patients are very few. On the other hand the potential benefit is substantial in that it still offers you a shot at either a cure or even if not cured, the possibility of extra years before you need to go on ADT for the rest of your life. In my experience with SRT I had minimal side effects - minor radiation proctitis starting about 10 months after the end of radiation and back to normal about a year after that. On the plus side - and for me it was a big plus - it wasn't a cure, but it bought me nearly 8 years before I needed to start ADT. I'm just one patient and I know my own experience is probably not typical. But weighing the risks vs the benefits - which is all any of us can do - I'd go for the SRT plus short term ADT if I were your age and in your position.
Jim
Posted 9/27/2018 7:14 PM (GMT 0)
I also had persistent psa after surgery, although much higher than yours.

My reason to have the 68 Gallium PSMA was to see if cancer had metastasized outside the pelvic region.
If so, SRT was fruitless.

The 68 Gallium, as your md's said, has about a 50% chance to detect the cancer location.

I also would frown on just ADT at this point, as a cure may be had with SRT.

Bobby Mac
Posted 9/27/2018 8:26 PM (GMT 0)
I don't know anything about the scan (wasn't available or I wasn't aware) but it sounds reasonable to try it.

As far as SRT goes, I had it. My experience was very easy. I don't trace any side effects to it at this point, and best of all, it apparently cured me.
Posted 9/27/2018 9:06 PM (GMT 0)
Go with the PSMA 68 Gallium Scan - not the Choline PSMA scan. It’s ability to detect is based on PSA output of the PCa membrane. There are no guarantees but there has been one Member on the PCUk website who had a hotspot located at 0.026 PSA. So miracles do happen. And it would be good to get a target to shoot at with the ray gun. Best of luck.
Fresh
Posted 9/27/2018 10:35 PM (GMT 0)
Paul,
I don’t have anything to add other than to strongly agree with those advocating for SRT, and you can add the ADT to that if you choose to do so. I would do the RT, and I would do it soon. You’re young and likely to tolerate it well. RT wasn’t a big deal for me, and I had it 8 weeks after RP. Unfortunately, the RT didn’t work for me but it was clearly the right choice for me at the time.
Posted 9/27/2018 11:32 PM (GMT 0)
I had IGRT radiation after recurrence, along with 6 months aDT. The Radiation was not a big deal - very easy to tolerate (for me). No significant side effects. However, my psa has continued upward and I had a free scan at NIH in Bethesda. My psa wa 0.5 at the time and a few months ago 0.2 was the minimum. Now 0.5 is the minimum. Get on the waiting list. As others have said there are other locations for Ga scan - mine was F18 (radioactive Flourine) which is marginally better than Ga. But either would be of benefit.

Go on clinicaltrials.gov site and do some searching

Good luck

Teddy
Posted 9/28/2018 11:14 AM (GMT 0)
Motown Paul..... I don’t know how to advise you on the scan but as far as ADT and SRT I would think that your medical team would be wanting to start you on some sort of ADT already. Like the guys have said it is ultimately your choice but at your young age why wouldn’t you pursue it and then after a couple of months start SRT. There are lots of studies out there about the benefits of combining adt and srt in fact we have several on this forum I just don’t know how to add the link to them maybe one of the other guys can do that the other thing we always have to remember is that everyday they are making progress and the cure for pca might be right around the corner. Read the ADT and SRT journey thread I don’t think at your age you want to sign up for hormone treatment for life unless you absolutely have to. JMHO

Larry
Posted 9/29/2018 8:21 PM (GMT 0)
ADT for life really means until your cancer become hormone resistant, sooner or later many do. Not having RT now with short or medium term ADT closes one early opportunity for a cure.

Post Edited (LifeCointosses) : 9/29/2018 2:24:08 PM (GMT-6)

Posted 9/30/2018 2:20 AM (GMT 0)
I would say no to the ADT as the only course for all of the above reasons. Other than that I will just wish you well and add my positive energy for whatever benefit it will bring.

Roger
Posted 9/30/2018 4:40 AM (GMT 0)
Going straight to SRT let’s you think on how to spend that 7200 windfall of free money when cured...
Posted 9/30/2018 2:52 PM (GMT 0)
Pretty much unanimous
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