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Thanks for your response. I just thought it should have reduced drastically by now (2011).
I need to make an informed decision on the options available to me based on the cost. If it is unaffordable to me, then I have to take chances with other treatments.
I am sorry that this beautiful site has to close down, it has really helped me come to terms and that I'm truelly not alone in this 'journey'. If there is any way we can help, so that others just being diagnosed can benefit.
I've just spoken with several men who are being treated at Loma Linda and paying their own way. The current cost for uninsured patients is $73,000. They don't negotiate that price. It is substantially higher than the $37,400 that I paid in 2009 (which I subsequently recovered from my insurer after three appeals). But $73,000 is substantially less than what UFPTI in Jacksonville was charging at that time.
For what it is worth, 4 years ago, I strongly wanted my father to have Proton Beam therapy after researching all the options. He was a Gleason Score of 6, T2b, and had a brother die of prostate cancer in his 60s about 10 years ago. Proton Beam was covered by insurance and was an 8 hour drive from our home. We found several places they could have rented for the duration of the treatment at a reasonable price. AKA, this was totally financially doable.
Take this next paragraph with the knowledge I'm approximating and relying on memory.
My dad instead decided to have local IMRT (Intensity Modulated Radiation Therapy) which is a 3D type advanced radiation, and this was TOTALLY his decision after hearing all the research I'd done. Proton Beam therapy allows a radiation grey scale unit of up to around 8100. Traditional radiation therapy give approximately 7500-7600 grey scale units. After our extensive discussions, his radiologist gave an additional treatment because he was doing so well with the treatment. Dad had 43 treatments instead of 42 for an additonal 180 grey scale units and approximately 7800 grey scale units of radiation.
I tell this story in case proton beam is not available to you... if you can get IMRT radiation and maybe have an additional treatment, you may get similar radiation doses without the additional cost. Knock on wood, dad has been below 0.5 PSA level since treatment and his PSA level has remained steady since his radiation 4 years ago.
Best of luck to you. As I've always said, this site is amazing for sharing of stories and insite.
