Proton Therapy: any long term side effects? Any reqrets?

Posted by oskarpr @oskarpr, Jun 13 3:44pm

Anyone who have proton treatment for prostate cancer wanna share his experience?
Any long term side effects.
Any regrets?

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As with JC, I also received Proton therapy at the UF Health Proton Therapy Institute. Prior to this we met with both surgeons and radiation oncologist to determine what we felt was the best course of treatment. After numerous consultations and conflicting advice, we/I made the decision that Proton was the way to go vs. photon radiation or surgery. I had 29 Proton sessions, followed by months of ADT (Orgovyx).
Other than some mild fatigue from the radiation and perhaps some more frequent urination, I had no significant side effects. The worst side-effects came from the ADT pills and they were extreme fatigue with its sister, no energy, weight gain, and a loss of libido. The ADT took my testosterone level from 770 down to 15, which did quite a number of my body. I would not hesitate to strongly suggest Proton instead of the older and traditional Photon radiation. The key is locating the right RO and facility, We live in Florida and Mayo Clinic only offered Proton in MN and AZ, Moffitt in Tampa did not offer it as well, with both saying they'd have it in the coming years (large investment).

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@oskarpr

Did you have Eligrad after proton therapy , how soon after treatment, why?

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We started the Eligard just 5 days prior to starting proton after reading much literature such as this (which shows that backloading ADT may have better outcomes than frontloading ADT by many weeks/months, which is how it is usually given): http://www.medscape.com/viewarticle/940049

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In reply to @tango32652 "What is MCC?" + (show)
@tango32652

What is MCC?

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@tango32652
You are on MCC. Mayo Community Connect.

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