Check in, protons, appreciations

[Guest guest]

Hi All,

I am approaching my first anniversary on this list (mainly as a

grateful lurker) and appreciate of all your postings. (History: My

beloved was treated with photons at Dattoli last year, the

whole enchilada of five weeks external beam, 100 palladium seeds

implanted 10 weeks later, and three months later an additional 8

treatments of IMRT, all ending in December of 2007. His initial

numbers were Gleason 6 upgraded to 7, 3 cores of 12 positive, PSA 9.

He is 62 years young, 63 in April).

Most of Bob's lingering side effects came from the course of hormones

(3 months of Trelstar, and six of Casodex and Avodart) he took to

shrink his prostate prior to seeding. With radiation one never knows

if future malignancies might be triggered, and one doesn't really even

learn, for a couple of years, if the cancer was successfully halted.

But we are meditators and live in the moment as much as possible and

this moment is a great one! (Although we're getting a little sick of

snow here in Vermont.)

For today Bob is doing great, sexual function slowly but definitely

returning without any chemical assistance, only real remaining side

effects very minimal (weight gain, slight breast swelling, all from

hormones). We feel very lucky.

All that said, do I wish we'd gone with protons? Yes, I think so.

Dattoli made sense on so many levels (and we'd already made our plans

when we first heard of protons) and they are certainly state of the

photon art. Bob had a condo in Bradenton which is near Dattoli; the

cost of a lengthy trip to California would have been extremely heavy

on our modest budget . . . we were also so relieved to have fixed upon

a plan after researching options for so long that we didn't have the

heart to rethink it anymore! But in my mind, if protons mean less

collateral damage in addition to QOL issues, it is just a HUGE HUGE

consideration.

If proton treatment proves successful over time, I fully believe it

will become the treatment of choice and will eventually be covered by

all insurance (including Kaiser, VA and other holdouts) if only to

keep competitive. Centers will be built and become more affordable,

it's the American way! I may be naive, but when the six or so

percent of insurance decision-makers and/or their partners face this

decision on a personal level, they may well be more open to finding a

better way.

What initially inspired me to write today though is to send my great

appreciation to Fuller for his persistence in staying connected with

this group. I was very touched, Fuller, by your thoughtful, humble

email to Dan describing your personal process of taking in 's

comments and modifying your approach over the past year in dealing

with protons on this listserv. The way I experience your posts now is

very different; they are not combative at all, but are those of a

strong wise advocate for a therapy he has personally experienced. I

am very grateful that new members to this " club that we never wanted

to join " will get the benefit of your experience. I am grateful all

of us are willing to learn and grow and as says, be kind to each

other. After all we're all in this together.

I know I write at length but at least it's infrequent.

Warm regards to all of you,

Audrey