My message: Advanced MPCa patients should be seeing a leading genitourinary oncologist!

[tallguy2]

I thought I would share where I am today. I am truly blessed.

I went to MD Anderson Cancer Center in Houston two weeks ago for a consultation with one of the county's leading genitourinary oncologists. No one told me to do this... I just did it and I am fortunate that insurance pays for everything but the airfare, too.

I went there knowing that it was unlikely that I would be eligible for a clinical trial, given that my PSA is steady at 0.1 after taxotere chemotherapy. But I went anyway, since a clinical trial is underway involving a drug (Zytiga; abiraterone) I was scheduled to start in November anyway, plus a new drug they are testing.

I found this clinical trial via clinicaltrials.gov. I contacted the trial coordinator and, to my surprise, the oncologist replied to my e-mail and asked me to come in.

The oncologist had me undergo a battery of tests. But before she even got the results she walked in and said:

1. " You will not start Zytiga (my urologist was going to start me on this drug), your cancer is not progressing at the moment." (My PSA is 0.1...it has to progress again back up to 2.0.)

2. You are not a candidate for a clinical trial (I have to see disease progression).

Tests ordered by my MD Anderson oncologist (not on the radar of my general oncologist or urologist) show that the largest area of metastasis, the area where my prostate used to be, is now undetectable.

The other two areas of metastasis, some lymph nodes and the L5 vertebrae, have shrunk but are still there.

There are zero cancer cells detectable in my blood, thanks to a blood test from Mayo Clinic in MN.

Yes, even MD Anderson collaborates with Mayo, as appropriate. Who would have thought?

I am thankful that I now have a leading research urinary oncologist on my care team. The folks at MD Anderson do NOT mess around. They have ordered FoundationOne genetic evaluation of my 2012 biopsy samples. No questions asked.

My consultation at MD Anderson on Nov 13th will be quite interesting. What's left in me may indeed be actionable via radiation or surgery, something that Sloan-Kettering Cancer Center in NY is trying on a limited basis too. Or the oncologist may have me wait for disease progression. In any case I am content that I am getting excellent care, beyond "the standard of care," and that, when the time comes, I will have my oncologist on my side, seeking the best possible clinical trial for me to enroll in.

Please, please, as Tall_Allen and Nalakrats and others have stated...if you have aggressive, high-Gleason score metastatic PCa, seek the advice at a leading research center. I did, and it has enabled me to keep Zytiga in my toolkit for later in life, and provided me with actionable results that neither my urologist nor my general oncologist provided.

[Fairwind]

Your local team of doctors have put you in a state of stable remission using the "Standard of Care " tools available to them. Did the hot-shot doctors at MD Anderson provide you with any treatment that improved your condition from where it was when you walked in ? We all pray for some breakthrough that will CURE our advanced, stage 4 PC. But at the moment, all treatment for metastasized PC is palliative whether it's administered at MD Anderson, Johns-Hopkins or Dana-Farber or your local home town cancer clinic...

[tallguy2 in reply to Fairwind]

I agree with you. I have added to my care team... I am reviewing the latest results with my local urologist on Friday. Everything I’ve done this far has indeed been the standard of care. I am pleased that my urologist and general oncologist encouraged me to visit Houston...they truly care about me.

My hope is that I can help myself and other men by being considered for a clinical trial when the time comes.

I am just getting started with the latest member of my care team. I’d say the advice to not start abiraterone prematurely was worth the trip. I should add that the diagnostics that were ordered picked up a 1” lesion on one lung that was there in 2012 (smaller) but never addressed before. It was biopsied last Friday. Waiting on those results...

[Dayatatime]

Well said tallguy2. With aggressive cutting edge therapy offered at leading research centers anything is possible. A research hospital and the doctors in them will push the boundaries of treatment and use unconventional therapy when average facilities cannot. They're database to pull from, state of the art equipment and the skill behind it can't be found in an average cancer treatment center. In my case it was a Urologist that saved my life. The local team I also work with still comments on they're disbelief on what The Mayo did for me and I still fly out once a year for follow up. My opinion is the same, get a referral from local doctor, buy a plane ticket if needed and make an appointment at a center of excellence. It will put you in the very best position to beat this or add years to your life.

Ron

[spicetoo]

I read your post with interest as I am beginning to travel down the road.

I am in the scan stage looking for cancer location post surgery and radiation.

Wondering if your oncologist discussions have shed any light on any early alternative treatment options for biochemical reoccurrence without any definitive metastasis?

[tallguy2 in reply to spicetoo]

I too had a radical prostatectomy (6 years ago) followed by radiation. I immediately started ADT when I had a non-zero PSA after all that.

Neither oncologist has brought up additional intervention when there’s no definitive metastasis since I am past that point. But another post on this site by tall_allen within the last week cited new results stating that broader radiation than I had, when added to ADT, can be very beneficial. My radiation was limited to the prostatic bed and the bladder neck. These new results speak to irradiation of the abdominal lymph nodes, if I am recalling this post correctly.

Best wishes!

[Hidden]

Good on you Allen. In 2004, I went to a Houston genitourinary oncologist in academia and research. I haven’t looked back since.

Gourd Dancer

[elainea53]

My husband went to mda for a consult after he had started treatment at Winship at Emory in Atlanta. The mda said since we had already started treatment he would not intervene. If we wanted him to be our md to come back after the Winship treatment. So had chemo amend fermigan and now eligard injections. We will be in Houston in a few days, we have dr subudhi, who only does pc, as our dr. Anyone else using him. We feel confident that he is handling things.

[tallguy2 in reply to elainea53]

Thanks for your post and good luck with the next visit to MD Anderson.