@batsam10
Don't hesitate to asked questions. I did not know about MCC until I had started my treatments and sure would have helped if had know about it.
I chose Proton Pencil Beam radiation. It was 30 rounds over 6 weeks. I chose that based on my Mayo PCP recommending proton radiation to me. When he was a medical student he did research at UFPTI and was thorougly familiar with both Photon (which Mayo Jacksonville only offers) and proton which UFPTI has been doing since 2006 and has the lates models and treatments using proton.
The use of Space/Oar moves the rectum away from prostrate and lessons radiation damage. I think to know what is biggest difference is that Photon raditation enters and leaves throughout body. SBRT can direct the xray away from organs but the radiation travels out the body. With Proton there is less radiation going in AND it stops at prostrate and does not proceed out through other organs and/or body.
What is now done to lesson damage and radiation damage to other organs and tissues is the Space/Oar and drinking water (it helps move the bladder away). But a certain amount will still cause some damage as the oncologist/radiologist will try to treat the entire prostrate and margins to ensure all is treated and something is not missed by the biopsies.
Pencil beam proton radiation is even more precise. They used this on me to stay away from my ICD/Pacemaker and the wires as much as possible. My device was monitored and I received not radiation damage to it.
The reason I did not have hormone treatment which was my original treatment with radiation was the Decipher test revealed I had a low risk of metassing not intermediate which a 3+4=7 indicates.
Other than some slight fatique later in treatment, some reduction in urine flow, I had no side affects. If you are considering surgery for a 3+4=7 you should get a second opinion. Many have the surgery with complications but tolerable. Many do have complications. What is best to know that even with surgery if some of the prostrate cancer was not contained to prostrate you will still have cancer growing elsewhere and your PSA will rise.
You can always asked a second opinion on diagnosis and treatment opinions for you specifically by asking Mayo Clinic or Cleveland Clinic to do a second opinion. It can be done electronically between the providers. I do think regardless you should have the Decipher test, along with PSMA, and bone scan. Those three tests will give a good look to make sure if cancer is contained to prostrate only.
I think you stated you were in Boston area. And you are right some outstanding medical providers there. But even though my original tests and consultation were done at Mayo I did a second opinion/consultation with UFPTI and chose the proton radiation ONLY because Mayo Jacksonville did not offer proton only Photon
I’m glad you were able to get the proton treatment as I have read exactly what you are saying. It doesn’t pass through which is what anyone would want. I don’t think most insurance companies will cover proton therapy. I have received a second opinion at a top hospital in Boston months ago and have another appointment this week with a cancer center that is rated one of the top 5 cancer centers in the nation. I’m hopeful this appointment makes me comfortable enough to make the tough decision I have to make. Thanks again for the advice and support. I truly appreciate it.