Thanks so much to those of you who shared your stories and advice. I had good news is that my MRI indicated that the cancer is contained to my prostate, though it is quite enlarged. The bone scan showed some abnormality in the upper part of the spine, so I am scheduled for an MRI of that area this Thursday just to be sure of what is showing there which hopefully is just arthritis.
I met with Dr. Neha Vapiwala, one of the most respected Radiation Oncologists at HUP. Her approach to my specific cancer would be to start me on Lupron Therapy a month before beginning Proton Therapy. Depending on an assessment of all of my factors I would either receive a 28 day high dose Proton Therapy or a 44 day moderate dose. I felt very good about my conversation with Dr. Vapiwala. I did subsequently learn that one possible side effect of the Lupron ( I would get that for a total of four months) can be osteoporosis. I understand there are supplements and other prophylactics to help prevent that. Has anyone here had any experience with this issue?
I also looked at Fox Chase Cancer Center's site and am intrigued by the possibility of Focal Therapy which uses thermal-based tissue ablation devices, such as cryoablation, which freezes the targeted area, or High Intensity Focused Ultrasound (HIFU), which uses heat to destroy cancer cells. Do any of you have any experience with this type of therapy?
In the meanwhile I'm trying to keep my life as much as it was before my diagnosis: full of enjoyable time with friends and my best pals-my Border Collie and my Sheltie, and my 20 year old cat.
Fred
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fredmartin
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You didn't mention any diagnostic info (Gleason score, PSA, stage, % cancer cores) that would allow me to comment. But if you're getting adjuvant Lupron and bone scans, you must have high risk prostate cancer. Focal therapy is completely inappropriate for cases like yours. The "gold standard" treatment for high risk prostate cancer is external beam radiation with a brachytherapy boost with adjuvant Lupron.
Proton therapy has never been shown to give better outcomes that just IMRT - neither oncological outcomes nor toxicity outcomes. A lot of insurance won't cover it, and it is expensive. Depending on your diagnosis, you should not have it as a monotherapy.
I hope you go out and meet with doctors who are specialists in all your options. Eric Horwitz at Fox Chase would be my top choice RO in the Philly area. He can provide high dose rate brachytherapy.
I am still learning the in and outs of this discussion board. Last PSA was 14.42 on 8/30. My biopsy results were:
On 10/4/17, 12 cores were taken: # 5, right apex, prostatic adenocarcinoma, Gleason Score 3+4+7 (10% Grade 4) (Grade Group 2), involving 12 mm (90%) of one out of one core. #10, right apex, Gleason Score 3+3=6 (Grade Group 1) involving 9 mm (40%) of one out of one core; #11, anterior, Gleason Score 4+3 =7 (60% Grade 4) (Grade Group 3) involving 18 mm (90%) and 1 mm (10%) of 2 of 2 cores.
Thanks - that explains a lot. The Gleason score 4+3 and elevated PSA puts you squarely in the unfavorable intermediate risk category, and explains why the bone scan/CT were done. Brachy boost therapy is still the standard for that:
The trade-off for the much higher cure rate is a higher rate of significant urinary problems. Only you can decide if you are willing to trade the risk of urinary problems for the greater certainty of a cure.
Because you are not high risk, another possibility for you is SBRT. Luthor Brady at the Philadelphia CyberKnife Center has reported excellent outcomes - both in terms of cancer control and toxicity - using SBRT on unfavorable intermediate risk patients. SBRT involves only 5 treatments:
It is also possible to use high dose rate brachytherapy (temporary implants, not seeds) as a monotherapy (rather than a boost) in cases like yours. Monotherapies generally have lower rates of side effects. This is a good topic to discuss with Eric Horwitz.
You are not an appropriate candidate for any kind of focal ablation - way too many positive cores, and in both the peripheral zone and the anterior.
As I said, for all the hype and claims about the Bragg peak, proton therapy has not proven to be any more effective nor have less side effects than any other kind of radiation. You can read about that here:
LHRH agonist like Lupron is not without side effects. Besides osteoporosis, testosterone does not recover immediately after LHRH cessation. For some people, it takes 1 to 2 years despite only short term use.
External beam radiation + brachytherapy does have higher control rate, but it does not have higher survival. There is also more potential complication.
Brachy monotherapy is appropriate, probably with higher control rate than SBRT, but it is more operator dependent. External beam has longer track record than SBRT, likely less effective than BT, but then you can avoid an invasive procedure.
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Soon starting the hormone and salvage radiation journey...
post-prostatectomy incontinence and ED
body changes on Lupron
early concerns/ paranoia 
Interesting story from the oncologist, and also my experience with Trimix.
