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Posted 3/9/2017 10:43 AM (GMT -5)
Looking for guidance on next steps..

18 months after RP surgery (Gleason 4+3, psa about 4.5) psa started up again and at about 34 months post surgery, with psa at 0.11, I started 6 months of ADT therapy, along with 37 IGRT radiation doses totaling 67 GY to the prostate bed. My pathology at surgery was excellent with no cancer outside the prostate, stage pT2c and only 10% of gland affected, and 18 nodes were removed , all negative. PSA has returned to nearly the pre-treatment level, now at 0.08 which is about 8 months from completion of ADT treatment. Testosterone level was nearly back to normal in December 2016, and my psa was 0.012 at that time. So the jump up to 0.08 was a surprise.

Being 63, I do not really want to go on ADT therapy for an extended time and wonder about the latest scanning technologies such as choline etc. I know psa has to be much higher (greater than 0.5??) and I worry about the risk of waiting for psa to rise to a level where it can be detected. I also am not sure if genomics testing of my prostate tissue (still available i am told) would be beneficial in helping me make treatment decisions. I am thinking a scan can identify where the problem areas / lymph nodes are, and then perhaps surgery or radiation could eliminate them.

Of course my psa is still low and perhaps it could level off at some reasonable value and I can avoid future treatment for an extended period of time, and so I am in a waiting mode, but still want to get eductated and understand possible next steps.

Thanks for any guidance others can offer. I will see my radiology oncologist next week and my urologist in a few weeks
Posted 3/9/2017 11:37 AM (GMT -5)
Teddy -

Sorry for your situation.

As you state newer scans will not probably pick up anything and not sure if genomic testing would tell you what you are looking for. Which is probably that the cancer is still in the regional area and you have a chance at knocking it out.

See what your RO says about your situation.

Others will probably chime in later.

Bobby Mac
Posted 3/9/2017 11:58 AM (GMT -5)
I would definitely stay the course on this one...What does your medical team advise???....a rush to judgement is exactly that...a rush... You could go for years before the smidgin of cancer...you may have left...becomes an issue and even then. not mortally so..IMO

A side note: how can radiation be so accurate as to search and destroy 0.03 of cancer??? if they build it they will come...even if its only designer cardboard on a old western movie set...

Post Edited (Bololidat) : 3/9/2017 10:01:54 AM (GMT-7)

Posted 3/9/2017 12:29 PM (GMT -5)
You're just under a year since your SRT. There remains the possibility that you PSA hasn't fully settled yet. But given the upward trend so far, this could also be early signs of SRT failure. FWIW, I had measurable return of PSA following 5 years of 0.00 after SRT but it then hovered in the neighborhood of .04, .05 for two more years. It has now jumped to .2 and then .5 over the past year - still low, but docs more concerned about the increased velocity. I'm about to shed my former uro and RO. My new MO says doubling times at these low numbers may not be reliable indicators of DT going forward. If my rate of increase slows I may be able to postpone ADT for a long time. If it continues at this rate, I guess I'm in for it sooner rather than later.

Your numbers could still level off, or at least increase so slowly that you have some years before facing further treatment. If trend continues upward I suggest seeing a medical oncologist who specializes in genito-urinary cancer for an opinion on if/when further treatment is needed. Best of luck.
Jim
Posted 3/9/2017 12:44 PM (GMT -5)
at this PSA scans aren't going to show much.

Do talk to the docs, but I'm thinking there isn't any need to rush to a new treatment. RT can take a long time to be effective. For now, monitoring your PSA is the best. You can ask for the genetic if you want.

In any case you wouldn't restart HT until there is a clear upward above your pre-SRT levels and possible not even until it gets to 2 or 4. At those levels, scans would better see where it's got to.

You might want to also consult at MO who specializes in PC. Do let us know what your docs say.
Andrew
Posted 3/9/2017 2:49 PM (GMT -5)
Some doctors say: I do not care as long as the PSA is below 0.1. You have had surgery and radiation. You can wait with starting HT until the PSA has got much higher. Maybe it goes down again but there is not much you can do now.

George
Posted 3/9/2017 4:05 PM (GMT -5)
thanks for all the guidance on my issue. I guess I still need to wait it out for a while and see the trend. Before ADT and SRT, my psa increased at a rate of about 0.01 every 3 months. Does anyone have a thought as to whether the rate of increase currently would be the same (at least for a while) as it was prior to treatment?

Teddy
Posted 3/9/2017 4:28 PM (GMT -5)
The PSA doubling time is often higher when starting at low values. In general it depends on the reason for the rise and that will be different before and after treatment. So you cannot compare these.
Posted 3/9/2017 10:26 PM (GMT -5)

teddy9 said...
Before ADT and SRT, my psa increased at a rate of about 0.01 every 3 months. Does anyone have a thought as to whether the rate of increase currently would be the same (at least for a while) as it was prior to treatment?

Teddy

I wouldn't put any stock in rates as low as 0.01 increase. Based on my experience -- twice -- after surgery and then again after SRT, my rate of increase was pretty erratic at low levels. After surgery I had a long pause -- a few years -- at .04 or lower then sudden jump to .1, then another long pause before sudden increase to .2 and months after that to .4. Then a similar trend after SRT. Based purely on my own experience, it would have been nearly impossible to extrapolate future rate of increase from early measurements. Even now that I'm at 0.5 I'm not inclined to rush into treatment, at least until I see the trend continue into single digits and then continue upward.
Jim
Posted 6/7/2017 1:16 PM (GMT -5)
Now an update on my situation - PSA has risen to 0.176, up from 0.08 3 months ago (March 2017) which was 0.01 at end of 2016. Very disappointed to say the least and seems to me that my IGRT /IMRT radiation (secondary) treatment has failed. My next visits to both my RO and urologist are in 3 months. They both said at my last visit in March that I should give the radiation a bit more time to have an effect - until around the end of the year. Radiation and 6 months hormone treatment (ADT lupron) ended last June 2016.

My plan is to find a medical oncologist who specializes in prostate cancer, and perhaps someone can provide recommendations for one in Central NJ. Perhaps at the NJ Cancer Institute. If needed I would travel into Manhattan.

Also will consider getting a scan done when PSA is higher and I have read that I can wait until psa hits 2 or even 4 before I need to have treatment. I prefer to avoid lupron as a long term treatment as I am only 63 and am hoping a scan could identify the issue which perhaps can then be treated by localized radiation (proton beam?? or other). Morristown hospital has a new C11 choline scan similar to that at Mayo clinic so that would be convenient.


Appreciate thoughts as to other / different next steps as well as medical oncologist recommendations.

Thanks to everyone

Teddy
Posted 6/7/2017 1:27 PM (GMT -5)
sorry to hear your PSA keeps going up. At the moment all you can really do is watch and wait to see what it is in three months. Finding an MO to consult is a good idea. Others might have recommendations.

You can wait awhile on the scans and further treatment. That's the next question to ask - how high do you let it go before starting HT again?

Generally spot radiation is only used for pain relief.

Andrew
Posted 6/8/2017 10:52 AM (GMT -5)
Thanks for your comments. I will do some checking for an MO

Teddy
Posted 6/8/2017 9:11 PM (GMT -5)
I'm Just another fighting patient but I agree that nothing should be done until psa climbs to about 2.0 when the new scans are more accurate. However you're psa doubling time is increasing to Three months which is not a good sign. I had an even faster increase but waited and didn't have to wait long for psa to reach 2.0. Axumin scan found bone met in femur. So I restarted ADT, had Sbrt to femur and started xgeva.
Posted 6/9/2017 8:28 AM (GMT -5)
Break
I am wondering about your comment on psa doubling time. I was under the impression that when psa is very low - less that around 0.2 , doubling time is not very meaningful since the numbers are very small. An example would be going from 0.01 to 0.02 in one month. Doubling time would be 1 month - which is sort of meaningless.

Any thoughts on this? I am somewhat concerned however. It looks like you are a real fighter with all the treatments you have had. Good luck in your battle.

Teddy
Posted 6/9/2017 10:35 AM (GMT -5)
Teddy

I didn't worry about psadt until PSA reached .2. I then switched from quarterly to monthly PSA tests. I was advised to wait until PSA reached 2.0 before getting ctpet with axumin so as not to waste the scan. These scans are expensive ( over $10k) but I paid nothing being on Medicare. And I didn't want false negatives! Then I started the treatments indicated in my last post. Good luck!
Bob
Posted 9/7/2017 10:58 PM (GMT -5)
Update with new data. Just received my latest psa - it is up again by about the same 0.1 increase to 0.3 ng/ml. It has gone from 0 to .3 in 9 months. Disappointing but not surprising. I am guessing failed radiation. So I see my RO and urologist in a week or so, and then have an appointment at Sloan Kettering with an MO (October) to see what options I might have instead of Lupron. I also want to learn how high can psa go before I need to treat it, whether I should consider these latest body scans to find the source of the psa, and whether genomic testing of my 4 1/2 year old prostate tissue could be of value and which test would be useful (Decipher?).

Looking for questions to ask the doctors (urologist, Medical Oncologist, Radiation Oncologist).

Thanks
Posted 9/8/2017 5:31 AM (GMT -5)
Hi teddy, I am in a similar situation with failed Prostatectomy and RT. Rising PSA with very short doubling time (around 6 weeks).

Had a Ga 68 PSMA scan when PSA was 2.6 Didn't reveal any distant mets but did show active cancer cells still in prostate bed. Bit of a problem there has it has been radiated enough, so no chance of further RT, thus no cure.

Back on ADT and luckily I tolerate that fairly well. Would have been good to double up with Zytiga as has proven beneficial in trials, but here in Australia, can't get that until Chemo has been tried.

Current plan is intermittent ADT assuming it continues to prove effective, then maybe chemo etc.

Probably still a bit early for any scan to be helpful for you, so the question is when to restart ADT. Opinions vary. My MO admits that he WAS of the opinion to wait until PSA was around 10 in a recurrence, but has now accepted that earlier is better. Still feels strongly that intermittent is better than continuous only because of the adverse side effects, particularly cardio and bone density.

Good luck with whatever you decide, Chas
Posted 9/8/2017 6:38 AM (GMT -5)
Chask
Really odd that PCa is still in prostate bed after RP and SRT! I guess you're on the HT train. Intermittent has worked for me but I had recurrence each time. Not sure if I'll get the opportunity this time since eventually I'll become castrate resistant.
I've had no recurrence anywhere that was radiated.
Bob
Posted 9/8/2017 10:56 AM (GMT -5)

teddy9 said...
I also want to learn how high can psa go before I need to treat it, whether I should consider these latest body scans to find the source of the psa, and whether genomic testing of my 4 1/2 year old prostate tissue could be of value and which test would be useful (Decipher?).

Looking for questions to ask the doctors (urologist, Medical Oncologist, Radiation Oncologist).

Thanks

Teddy,
I'm sorry to see your latest results weren't better. I've been in your situation, though no two cases are the same. You have had a faster return of PSA both after surgery and after SRT than I did. My last PSA (June) was 0.9 and I and my MO are still holding off on starting ADT for the moment.

You should now be seeing an MO. I left my uro earlier this year and now see an MO at Dana Farber. His opinion -- based in part on the very slow increases I've had post-surgery and then post SRT -- is that my current 6-7 month doubling time may lengthen as the numbers get higher. He says he doesn't much trust doubling times based on PSA readings that aren't yet in whole numbers. My next test in October should give a better indication of whether he'll want me to start ADT soon or wait until later. You might want to ask your MO if he/she recommends ADT based purely on the number or also a combination of the number and rate of increase.

As for the new scans, I'm less impressed than I once was. When I first learned of the Choline scan at Mayo a few years ago, I thought I'd pony up for one if I had a recurrence after SRT (which I do now). Now I'm no longer interested. I can see the value for identifying mets for individual treatment for pain relief, etc. if needed. Bear in mind this is just my opinion, though also the opinion of several doctors I've discussed it with -- but I now see this as playing whack-a-mole. Whatever mets are large enough to be seen and possibly zapped, are not all there is. Those mets got there because of systemic cancer cells that are in clusters too small to be seen and which will still need systemic treatment. I suggest you discuss this with your MO, who may well believe differently than I do. Again, I'm just a patient, not an expert and my opinion can change based on persuasive evidence.

Best of luck going forward.

Jim
Posted 9/8/2017 11:47 AM (GMT -5)
teddy9-

I'm so sorry the SRT didn't work. I agree with Bohemond. Your next step is to see an MO - neither an RO nor a Uro can do anything for you at this point. MSK has some of the best MOs in the world.

Unfortunately, your PSADT is very rapid - about 3 months. While getting another PSA before your MO appointment is certainly a good idea, your trend is very clear. That is a clear indication for starting ADT. I just met with a very good MO (Tanya Dorff) last week with a patient with an almost identical history. Her feeling (based on recent trials using early Zytiga) is to hit it hard at first. She is trying to get his insurance to approve Zytiga ("Probably not - but I've seen it happen. It can't hurt to try.") .Her goal is to kill off at least 90% of the cancer cells quickly (within 9 months). If she can get his PSA down to undetectable for 9 months, she believes she can give him a 2-3 year vacation after that. The "theory" here is that reducing the tumor load may extend survival and provide more time off ADT. Systemic therapy with an advanced hormonal is the best way we know how to do that. I've found that the top MOs can sometimes influence insurance companies to get approval off label.

Because your PSADT is so rapid, it may be possible to detect metastases even at your low PSA. The Axumin PET is now FDA-approved, so your insurance may cover it. MSK is also testing some newer PSMA-based PET scans, and they have a PET/MRI - not just a PET/CT - they may be able to get you in on a trial. If they can discover any mets, and if they are in a safe place, it may be possible to zap them with SBRT. But you have to do this before beginning ADT (ADT makes mets disappear). This may further decrease your tumor load. It can be done in addition to systemic therapy but not instead of systemic therapy for the reasons that Bohemond said.

Decipher is used to help you decide whether to have SRT or not, so you are beyond using it. Most genomic tests require a significant metastasis to biopsy and it's doubtful you have one big enough. Metastases have different genomic profiles from cancer in the prostate. But this is certainly worth bringing up with an MO at MSK - they are at the leading edge in this.
Posted 9/8/2017 12:01 PM (GMT -5)

Chask said...
Had a Ga 68 PSMA scan when PSA was 2.6 Didn't reveal any distant mets but did show active cancer cells still in prostate bed. Bit of a problem there has it has been radiated enough, so no chance of further RT, thus no cure.

It is possible to do focal therapy - either focal HDR brachytherapy or focal ablation on detected cancer in the prostate bed, even after previous radiation. You may be interested in the following article:

/pcnrv.blogspot.com/2017/09/focal-salvage-ablation-for-radio.html

As you see, there is a group in Australia, led by Phillip Stricker, who is testing focal ablation techniques. IRE is not the right one, but focal cryo, or HIFU, or FLA, or PDT may lend themselves to focal ablation within the prostate bed. It is also possible to use HDR brachytherapy to treat just that site (LDR brachy (seeds) may not work because there is nothing for the seeds to grab onto, whereas that is not a consideration for HDR brachy).

It couldn't hurt to talk to Phillip Stricker about this.
Posted 9/8/2017 1:55 PM (GMT -5)
I waited till PSA went above 2.0 to get the CT pet with axumin. It found the source: a femur met which I nuked with SBRT. As you can see I've had three RT series and no recurrence in areas radiated.
Bob
Posted 9/8/2017 9:09 PM (GMT -5)
I can tell you Prof. Stricker won't come cheap though.
I emailed his office and asked one question regarding some information that was posted on his website, and was told a phone conversation to discuss the answer would set me back $400.00. Ouch.
Ah... I'll go without the info thanks. Anyway... trials are a whole different kettle of fish, so I digress.
I'm very sorry to hear of your situation Teddy, and hope you can find an excellent MO to take care of business from here onwards.
Wishing you all the very best from Downunder.
Jaybee&GG
Posted 9/8/2017 10:43 PM (GMT -5)
Jaybee, interesting take on Stricker charges.

When I was first diagnosed, I filled in a form on his website to get a 2nd opinion. Didn't get any immediate response, so in my uninformed panic, arranged a local (Canberra) prostatectomy.

Day before the surgery, I got a call from Stricker himself. He had been overseas and just got back and was attending to outstanding issues. We had quite a long chat but I was comitted to the surgery so didn't follow up with him. He didn't attempt to change my mind.

There was never any question of a charge, but that was back in 2013. I know he is regarded as the rockstar in Oz.

Funnily I have actually been contemplating getting a referral to him to follow up on other urological issues, so TA's comments are very relevant - thanks TA.

Chas
Posted 9/9/2017 2:00 AM (GMT -5)
Maybe he thought I was just a tyre-kicker Chask. Mind you, I never got past his front-line (reception). They called me back and advised the price for a phone consult with him. He is indeed the 'rockstar' around these parts, although he has some pretty stiff competition in Melbourne from the likes of Declan Murphy and Anthony Costello - both of whom are all-round awesome guys. Hope your follow-up goes great too - it's such a b!tch to have to be dealing with recurrence after primary tx - aarrggghhhhh.
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