Hey guys, I just want to fill you in on my SRT consult at Fox Chase Cancer Center in Philly on Monday, July 15.
I met (actually WE met, my wife attended) with Dr. Horwtiz, who is well regarded in the RT field. He specializes in prostate cancer RT. He was past Chair of the American Brachytherapy Association.
I did meet first with a Nurse and then with his MD junior associate and MD intern. They kind of felt me out and discussed some things. They consulted outside the exam room with Dr. Horwitz after these pleasantries. Then, Dr. Horwtiz comes in (with the other 2 as well) and knows that I know my entire history down to 3 decimal places and can regurgitate any result, stat, study, etc. that applies to me just like I am reading from a script
(thanks HW nation!) Lol
He starts by saying that he does not meet many people like me. One that is so knowledgeable about
PCa. Then he goes over my specifics. He tells me that I have many good things about
my case. They are no seminal vesicle invasion, no lymph nodes positive (7 total removed), an undetectable uPSA for 18 months post op and a slow and steady uPSA climb that is still very low (.055-June 22). All good things he tells me. He also tells me a couple of bad things that may not necessarily be that bad. The EPE and small positive margin combined with the other information leads him to believe that any residual disease in the prostate bed.
I do want to mention that he specifically asked why I came to him at this point. I told him that my Uro Surgeon at UPENN tracks uPSA and when it hits .06, they advise the patient to seek additional treatment thru an RO. I told him that I was aware of my trend and that I was aware of studies that say a trend above .03 is reason to seek additional treatment. So, I told him that I was not going to wait until .06 and that I set this appointment up myself by watching the trend and acting when I got my second uPSA over .03 (.035, then .044). He was impressed! He told me that the majority of SRT patients he sees, via recommendation from their local Uro’s, have PSA’s over .2, with some well above .2.
On another side note, he told me that he sees many post RP SRT candidates that had no lymph nodes removed in surgery and tested for PCa. I was stunned by that. I just thought that was standard procedure for that surgery.
Anyway, he tells me we can do 3 things. First, do nothing. The slow rise could mean that I don’t hit PSA above .2 for a couple of years. He then said, based upon my case, he would not recommend that. Second, we can treat with HT. Then he tells me something that shocked me. He tells me that, for people like me, that HT has shown no benefit. He cites a major study’s PSA threshold of .34 being the go/no go point. That is, anyone like me with a PSA under .34 has shown no benefit from HT. Third, treat with RT, 34 treatments to the prostate bed and also to the regional lymph nodes.
After that, I ask if I could present my plan and I tell him most directly, that “you can shoot this down at any time”. Lol He laughs and tells me directly that he is 100% sure he will agree with my plan.
I tell him that I am going on vacation in less than 3 weeks and that I would like to start treatment upon my return. He tells me that is fine and that they need time to set this all up anyway. I tell him that I am leaning heavily on HT to be part of the treatment. He tells me that is my choice and that he is OK with or without. Then I ask him about
the commencement of HT and that I would like to start near the end of August. He again tells me this timeline is ok (he tells me that I should not wait past 6 months to commence treatment). He tells me that he can start HT with a one month shot to see how I tolerate it. Then it would be 2 more 3-month shots, totaling 7 months on HT. He tells me that I can start some imaging when I return from vacation and once that is done he can do his planning in mid-August. I also tell him that after 35 years with my employer, I have amassed about
300 sick leave benefit days and that I would want to take medical leave during RT, with a week or two before and up to 1 month afterwards, meaning I’m looking to take off 3 months. He tells me he is OK with that, but also that I would not be limited in any activity and that I could work if I wanted to. I am concerned about
HT fog and any immediate upfront SE’s from RT. Plus, FCCC is 1 hour each way for me. So, I could have my daily RT appt late morning after the morning rush and end well before the evening rush.
I ask about
Cat scan, imaging, bone scan, Auxium scan, etc. to locate any issues. He tells me at my PSA, even the best scans will not find anything. He tells me the scans I got 3 years ago have already shown that there were no distant issues. So, any imaging that will be done is strictly to locate areas so he can map out a treatment area.
Oh, yeah, one more thing……I got a DRE after 3 plus years! All good, nothing detected!
I may have left a few tidbits out, but this basically summarizes it. So, my treatment will begin in less than a month. I am figuring SRT mid Sept thru Mid Nov. This is my last shot at a durable remission. I am going thru some of the same pain points mentally that I had 3+ years ago. But I know that will subside once the treatment protocol is set.
I am off to the west coast next week, Grand Canyon, Phoenix to see the Phillies play, then off to Southern California. Then back to reality and a few immediate appts at FCCC in early Aug to get this started.
I big Thanks to my HW brothers (and sisters). I could not have amassed this much info without you.
J
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Age at Dx: 54 (DOB: 01/28/62)
08/31/15: PSA 2.5;
01/01/16: Urinary Frequency;
02/05/16: DRE Pos Nodule;
02/22/16: Biopsy;
02/26/16: Dx: 7-12 positive; (5) 3+3=6; (1) 3+4=7; (1) 4+3=7; T2B;
03/11/16: Bone Scan Neg;
03/23/16: CT Scan Neg;
03/31/16: Surgery Consult UPENN;
04/08/16: RT Consult/2nd Op Fox Chase CC upgrade to 4+4;
04/14/16: 3TMRI "organ confined", EPE-, SV-, LN-;
06/01/16: DaVinci @ UPENN (Dr. D. Lee);
06/08/16: Catheter Out;
06/08/16: Post-Op Path: EPE+;Marg +;SV-;LN-;G7(4+3) (G4 80% - G3 20%);tumor vol 25%;T3a;
07/01/16: Start 5mg Daily Cialis, 20mg once a week on Friday's;
07/06/16: Decipher: 0.56 (Average Risk);5 Year Metastasis 7.6%;10 Year PCa Specific Mortality 6.9%;
08/01/16: Penile rehab started (Pump);
01/30/17: Decipher GRID PORTOS: Avg ADT Response (21%);Avg Docetaxel Sensitivity (56%); Lower RT Response (45%);Avg Dasatinib sensitivity (38%);High Genomic Gleason Grade (81%); High Metastasis Risk (70%);High Tumor Cell Proliferation (82%);Avg AR Activity (56%)];
09/26/18: 99% continence (some stress every now and then); ED no issue (5 mg Cialis/Day);
Post-op uPSA History:
08/31/16: uPSA <.006; (3 months);
12/01/16: uPSA <.014; (6 months);
03/01/17: uPSA <.006; (9 months);
06/01/17: uPSA <.006; (12 months);
09/01/17: uPSA <.006; (15 months);
12/01/17: uPSA .007; (18 months);
03/01/18: uPSA .010; (21 months);
06/22/18: uPSA .015; (25 months);
09/21/18: uPSA .018; (28 months);
12/21/18: uPSA .035; (31 months);
03/22/19: uPSA .044; (34 months);
06/21/19: uPSA .055; (37 months);
07/22/19: uPSA .061; (38 months);
Post Edited (JayMot) : 7/24/2019 11:01:27 AM (GMT-6)