Watching/Waiting for cancer to show itself

[mickeypb]

I am fairly new to this site, read some very interesting posts so far.-

History-Perineal Prostatectomy - (5/22/07) Pathology - Gleason 6 (3+3) Staging -T2c NX MX Stage II Grade G2.

PSA rose to 0.54 (12/12/07).

Did

IMRT - 6600 cGy - 33 Treatments over 49 days (1/31/08-3/19/08). Lowest PSA was 0.10 (9/23/08) PSA rose to 1.19 (11/17/12), 1.43 (11/26/13), 2.34 (3/11/15), 3.00 (9/10/16).

Clinical Trail – PET Scan w/18F-fluciclovine (4/21/17) Also Bone and CT Scan (4/12/17) – No disease found.

Lastest PSA was 4.6 (11/21/17) up from 3.2 (6/5/17) up from 3.00 (9/10/16)

I'm not really sure what next step should be or when. I'm starting to think much sooner than later. Looking at a clinical trial for Gallium-68 PET scan. Or should I just start some form of hormone treatment and should it include a chemo component?

Live in the Philadelphia suburbs with access to NYC or Baltimore.

Thanks for any thoughts, Paul

[Hidden]

Hi :

With this PSA value 4.6 a Ga 68 PSMA PET/CT has good sensitivity and it could give you a pretty good idea if the cancer has metastasis.

There are several clinical trials,. Please look for prostate cancer and Gallium 68 PSMA in clinicaltrials.gov . I believe there may be trials in the NY area.

Your PSADT is around 2 years + so you have time to research this subject and see if a trial for Ga 68 PSMA study is possible for you. I think there are ongoing clinical trials at UCLA and at UCSF that you could qualify .

Best wishes

Raul

[Hidden]

I check your PSADT in the Sloan Kettering web page using the last 3 values and it is 2.6 years.!!

[Darryl Partner]

Our excellent clinical trial search directory is on the lower right side of the Malecare.org home page

[Darryl Partner]

antidote.me/malecare-find-a...

[Tall_Allen]

There is a much better PSMA-based PET scan called DCFPyL and it is available for free at NIH in DC. (You have to pay out of pocket for the Ga-68-PSMA-11 PET/CT - they charge $2650 for it at UCLA). Here's the link with contact details:

clinicaltrials.gov/ct2/show...

At a PSA of 4.6, I'm surprised the Axumin scan didn't show anything - perhaps your cancer has a peculiar metabolic profile.

You ask a good question - what would you do with the PET info anyway? There is a chance that it is still in your pelvic LNs, and they can give salvage radiation to the pelvic LN area (I'm assuming they only zapped the prostate bed last time). An RO can tell you if it can be done.

If there is a detected metastasis in a different place, it can be spot-radiated with SBRT (just one or two doses). Whether or not that accomplishes anything is still very undecided. The only randomized clinical trial on the subject just reported equivocal results:

pcnrv.blogspot.com/2017/12/...

My opinion is that if the met(s) are in a safe place to radiate -- why not? (You would need to talk to a good RO who has SBRT-capable equipment).

The other possibility is that the PET scan might detect nothing (micrometastatic and systemic). In that case, you are faced with the tough decision about when to start ADT and what kind of ADT. Certainly not chemo with what you currently know.

You have an excellent radiation oncology department nearby at Fox Chase, headed up by Eric Horwitz. If you want to discuss ADT, Elizabeth Plimack as MO would be a great choice. If you want to go to NYC, Michael Zelefsky at MSK is the tops for radiation oncology. Michael Morris is a good choice for medical oncologist now that Howard Scher is no longer taking patients. At Johns Hopkins, I can't recommend an RO (it's not their strong suit), but Emmanuel Antonarakis as an MO is as good as it gets, especially for personalized medicine.

[vandy69]

Good Sunday Morning mickeypb,

I have been in this battle for almost 6 years (please see bio for complete treatment history).

With a Med Onc who specializes in prostate cancer, you have many avenues for treatment without getting in clinical trials at this early in your battle.

OK for trials of the latest diagnostic scans/tools, but you do not need clinical trials for actual treatments--save those for later if other approved treatments fail.

Best wishes. Never Give In.

Mark, Atlanta

[Hidden]

How do you feel physically? So much info. Hard to know what to do. You’ve already been thru so much. I’m sure you’ll make the right decisions to live. I’m not the expert . I’m sure that the well informed will advise you. If you have the means seek out a prostate cancer specialist. They really know up to date what’s available to you. No desease found, that’s huge. ADT sucks but that’s a mainstay that you’ll need . Whatever treatments you choose be sure to do other things if you’re not already doing them; ie diet, exercise , attend to your self with good things to counteract the bad. We all have this monkey on our back . It can’t be ignored...You will take care of it again. Whatever hurdles APC presents we will jump until we can’t jump no more. Hopefully our jumping days won’t end anytime soon. It’s no cake walk. Love yourself and those around you. We all worry. Our chemistry is challenged permanently. We’re all on the same path. You’ve been on this path much longer then I have. Remember half of the stuff we worry about ain’t never going to happen..Worry is the enemy... easily said......if not in brutal pain don’t waste all of your time worrying about the worst. Keep on truckin! I started off w/ kidney failure from Pc so for me everyday not in pain and out of the hospital is gravy. I’m trying no to squander my days with worry, fear ,and anger. But I too as well as all of us have our bad days. Please let me know how you progress?