Where is my cancer hiding?

[kmack57]

Short version of my story. Initial diagnosis G6, PSA 4.2 had Proton radiation. PSA goes to a nadir of ,5 then slowly rises, have a C11 Acetate in November 2016 that identifies cancer in the prostate and no where else. Go to Dr Onik in Florida for a mapping biopsy and treatment with light cryo and IRE in February 2017. PSA drops to .3 then slowly rises to 4.8 (while on Dutesteride, so double the numbers). Have a MRI and Axumin PET scan in March and April, both seem to indicate cancer in what is left of my 16cc prostate and no where else. Have a 12 core biopsy last week and it comes back with no cancer! Where the hell is it??? Doc says we can do another mapping biopsy or assume it has escaped and wait to see where it shows up. What are your thoughts?? Could he have missed the cancer? I am leaning toward the mapping biopsy and I still hope for a cure with cryo of what is left of my prostate. Scans were done at the University of Maryland and the biopsy was done at Hopkins.

[Tall_Allen]

One of the problems with focal ablation (cryo and IRE) is that viable cancer can be left inside the ablation zone, often mixed in with and surrounded by necrotic tissue, which shields it from further ablation. It is difficult to biopsy and even more difficult to read the biopsy. In fact, I think you should have the cores sent to Epstein's lab at Johns Hopkins for a second opinion - and be sure to let him know that it had been treated with protons, cryo, and IRE. (I'm frankly surprised anyone can read it). It's really not critical to have biopsy confirmation if you have Axumin PET and MRI confirmation.

I'd hate to see you have salvage surgery with all that damaged tissue, and I think it's time to walk away from ablation. That leaves two choices - whole gland salvage SBRT and whole gland salvage brachytherapy. You can get salvage SBRT for free at a clinical trial at NIH if the ablation doesn't exclude you. Or Don Fuller in San Diego may agree to do it - you'd have to ask him. You can possibly get salvage LDR brachy at MSK (Kollmeier), and salvage HDR brachy from Kamrava at Cedars-Sinai. It's worth a phone consult to see if they'd treat someone who's had ablation.

pcnrv.blogspot.com/2017/09/...

pcnrv.blogspot.com/2016/08/...

pcnrv.blogspot.com/2017/08/...

[kmack57 in reply to Tall_Allen]

The biopsy was done at Hopkins. I approached surgeons at both Maryland and Hopkins and all declined to attempt surgery. My case was presented to the tumor board at Hopkins and their suggestion was Cryotherapy. Another Dr. was willing to do Brachytherapy. Both wanted the scans confirmed by biopsy however, which leaves me with my current dilemma.

[Tall_Allen in reply to kmack57]

Whole gland cryo has really bad side effects. And ablation has already struck out for you twice. I suggest you look into the recommendations I made, although I'm not sure they would treat you - all you can do is ask.

The only way you can be assured of getting cores from everywhere is if you get a template mapping biopsy with a core every mm. I don't understand what you gain, though since you already know there's cancer in your prostate based on the Axumin PET and MRI. Because the Axumin PET confirmed that there are no significant distant metastases, curative treatment may still be possible.

[Hidden in reply to Tall_Allen]

Great info . Thanks . You do answer questions. Good job..

[Hidden]

Not a doctor, but not a fan of cryo -- seems like a blunt instrument. I went with HIFU which provides real time feedback as to where the energy focus is in the prostate and even to what temperature the ablated tissue is reaching. Approved by the FDA in 2015 but not widely accepted by the medical establishment, which has investments in existing treatment methodologies in terms of experience and equipment investments. I had full-gland ablation. Focal ablation was an option that my surgeon did not recommend.

[kmack57 in reply to Hidden]

Not a candidate for HIFU due to prior treatments and gold fiducials from Proton. I'm down to Cryo or Brachy.