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Starting Proton Treatments for Prostate Cancer: Any experiences?
Prostate Cancer | Last Active: Aug 1 5:01pm | Replies (150)Comment receiving replies
Completed proton radiation treatment at Loma Linda Hospital in Loma Linda, California, July 2010. The procedure has changed somewhat from what I understand, but my experience is briefly outlined below.
PSA: 6.46
Gleason: 3 + 3
Diagnosis: Slow growth cancer in one of the prostate lobes.
I have TricCare for life as US military (now retired); I recall the total cost was in excess of $100K; not to include personal accommodation expenses.
2.5 months of morning Proton radiation treatment requiring accommodation and renting a vehicle, so that issue is an economic consideration.
Absolutely, no residual issues...nothing, zero, "nada".
PSA test every year; up and until 2016, PSA Zero; 2017: .1;2018;.4 now PSA as of July 2023 at 3.29
So, 13 years and increased PSA.
There is no way to ascertain if cancer has returned..watchful waiting to measure any future increases. Perhaps later a scan. I have a "family doctor", but I use the VA as primary. I may go up to Mayo in the future if my PSA continues to increase...RH/Melbourne, Florida
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RH/Melbourne Florida. (By the way I grew up in Vero Beach Florida). I live in Ponte Vedra (just south of Jacksonville where Mayo is). I have been a patient of Mayo Clinic as of 2006 before they even had a hospital just a clinic.
Jacksonville Mayo does not have proton radiation only photon. They are building a cancer center that will have proton but is years away. Just wanted to pass that along. Both Rochester and Phoenix have robust proton prostrate cancer program and I learned a lot about proton radiation versus photo from those locations web sites.
All my MRIs, biopsies, initial medical exams and consultations were (exam, ordered tests, did biopsies) by a specific Mayo urologist. But when he referred me to radiology/oncology I found Mayo Jacksonville did not have proton radiation treatments.
After discussing with my primary care doctor I decided to have my radiation treatments at UFPTI (also in Jacksonville). Then I asked to see my Mayo urologist after my treatments were finished for routine follow ups (NOT treatment follow ups that was at UFPTI). I was told because of the volume of patients I could not see Mayo urology because I had my radiation treatment at UFPTI.
I never had a urologist at UFPTI. UFPTI used the medical exam, MRI with probe/contrast, and the biopsies done by my Mayo urologist to design and set up my treatments by their radiology/oncology physic department.
I have never see a urologist at UFPTI. UFPTI uses Shands for any referrals needed and for things like Space/Oar but I never saw or was treated personally by a urologist. When I advised UFPTI of Mayo decision they offered to do a referral to Shands urology if I wanted one.
But I did not as it was a request for routine follow up care with the most experienced person knowledgeable of my urology. At UFPTI I would see a brand new urologist who did not do my medical exam, DRE, MRI, and biopsies using the MRI/Fusion.
I mentioned this as you said you may go to Jacksonville Mayo but you had your radiation treatment somewhere else. I disagreed with Mayo as it was a request for just follow up NOT my on going radiation follow ups. I am still doing radiation therapy follow ups with UFPTI radiology/oncology not urology.