IMRT+ Brachytherapy vs. Proton Beam Therapy

robert1 said:

BC/BS of FL will pay
Larry:

BC/BS of Florida tells me they will pay 100% of treatment costs at the UF Proton Institute in Jacksonville after my deductable is met. What a nice surprise. At last, I fully understand why I bought excellent health insurance.

Loma Linda sounds really great, but I have heard equal praise about the UF facility, and it is within a 4 hour drive. UF Proton learned a lot from the folks at Loma Linda. Those two facilities and MD Anderson's Proton facility are closely cooperating now.

Thank you,

Robert

That is good news that
That is good news that insurance will pay. I have BC/BS Tennessee and as mentioned they denied. This was two years ago. I had also received info from UF Jacksonville. At that time they were not sure if my insurance would cover or not without submitting an actual pre-claim. I'm sure that any of the centers will give you the best care they can.

larry

robert1 said:

BC/BS of FL will pay
Larry:

BC/BS of Florida tells me they will pay 100% of treatment costs at the UF Proton Institute in Jacksonville after my deductable is met. What a nice surprise. At last, I fully understand why I bought excellent health insurance.

Loma Linda sounds really great, but I have heard equal praise about the UF facility, and it is within a 4 hour drive. UF Proton learned a lot from the folks at Loma Linda. Those two facilities and MD Anderson's Proton facility are closely cooperating now.

Thank you,

Robert

Insurance Coverage Conundrum
When I inquired about Blue Shield coverage for PBT at Loma Linda, I got a lot of "I don't knows" and no help in getting a definitive answer.

I ultimately chose CK at UCSF in San Francisco because it as covered by Blue Shield and only required 5 treatments near my home vs. about 40 treatments (2 months) in SoCal, where'd I'd have to find a place to live during treatment.

It's amazing to me that each Blue Cross/Blue Shield affiliate has it's own standards about what it will cover and that there is no common standard for treatment. Eg. Blue Shield CA will cover CK but Blue Cross CA will not. WTF?

It would be nice if someone could come up w/a definitive survey of what each insurance carrier will cover to make the decision making process easier, but I wouldn't hold my breath waiting for one.

Unfortunately, each of us has to plow through all of the medical insurance nonsense to find the answer unique to our own carrier and situation.

robert1 said:

CK
Hello Swingshift:

I cannot find much long-term data on CK. What made your mind up? Have you been pleased so far?

Thanks,

Robert

Why CK?
Hi, Robert:

My financial and practical reasons for choosing CK are stated above. I was a Gleason 6 w/a PSA around 4.5 and Stage T1c at diagnosis in Jan 2010. I was treated w/CK in Sept 2010.

When I did my research, I was appalled w/the risks of surgery -- particularly the incontinence and impotency issues, as well as the visual shortening of the penis as a result of the "gap" created by removal of the prostate, need to wear a catheter for an indefinite time post-surgery and the general risks of surgery, particularly the risk of infection from perforation of the rectum. So, I decided very early that I was NOT going to let them cut my prostate out unless ABSOLUTELY necessary.

I was a member of Kaiser at the time and the only choices presented to me were limited to just surgery and brachytherapy (BT). So, after talking to some surgeons and ruling out surgery, I went to the NorCal Kaiser BT center in Roseville to get an orientation and screening for it. I ultimately decided that BT was NOT for me either because I didn't want the seeds in my body forever and didn't want to be radioactive for a year and because I didn't think it was a precise enough method of radiation delivery -- based on reports of radiation related "side effects" including rectal, bladder and urinary tissue damage and the associated risk of urinary and sexual dysfunction during treatment.

This led me to consider PBT and CK. PBT has the longer track record but the nearest facility to me was at Loma Linda. I didn't like the fact that I had to live down there to receive the 8 weeks of treatment and the fact that I couldn't get a definitive opinion on whether it would be covered by insurance just left CK.

Fortunately for me, CK was offered at UCSF in San Francisco where I live and it was covered by Blue Shield which I could switch to from Kaiser during open enrollment. CK has enough of a track record (5 years) to give me confidence of the probability of success. Based on my research, CK was also preferable to PBT because it only required 4-5 treatment sessions and provided an even more accurate method of radiation delivery than PBT (the computer adjusted for body and organ movement during treatment, but PBT does not) and I didn't have to get fitted for a bodycast to lay in during treatment and didn't have to get a balloon stuck up my butt during treatment either. I also read that there were still some incontinence and radiation burn (because the beam doesn't move) issues w/PBT. Not so w/CK.

I was totally satisfied w/my CK treatment. Very easy with no notable side effects -- still pee and f*ck like normal although my ejaculate production is way down which is to be expected. However, unlike others who report rapid drops in their PSA score to around 1, my PSA scores have not dropped rapidly in the 9 months since treatment. In fact, they initially spiked to around 19 and are now at 3.7, just below where they were before treatment but, according to my RO, I shouldn't worry because I've got 4 years for the score to reach 0.4.

Only time will tell whether CK for me has been successful or not. I'm not worried "yet" and will deal w/the further need for treatment if and when the issue arises.

Robert Look on The Cancer
Robert Look on The Cancer Survivors Network web sight for Postings by Slivertreak ( me) I just finished with 44 treatments at Procure Proton Center in Warrenville Ill ( chicagoland) .. I have spoken with others who selected other Prostate options and some said they were good but almost all said they had some problems with what they selected ... so far I've not spoken with any that had anything but a red rash or maybe while being treated had to go urinate a few more times .I so far Have had no side effest what so ever ...daily routine thru out ..great people insurance covered ..no pads ..no missing hair ,,sex life good etc etc ... Proton is somewhat new ( 1990 ) but what if no one bought the 1st apple computer and/ or the 1st bag phone ??? I've read where Mayo Clinic is building 2 of this ...there are 9 so far in U.S.A. ...

robert1 said:

Proton vs. other options
Thank you Silverstreak

I visited the UF Proton Institute, was approved by them and my insurance company, was all set to do PBT, and then read the Loma Linda/Mass General study. Relative to other choices, the 10 year cure rate results were not great for imtermediate risk patients like me (69.6%) . What a bummer! If I had less disease volume I would be in PBT right now.

Good luck to you.

robert1

Analysis Paralysis?
Hi, Robert:

Sounds like you're doing a lot of research and giving a lot of thought to choosing the "right" treatment option for you -- as you should. However, just be careful that you don't over-analyze what you read.

No treatment option is perfect. You just need to pick the best fit. Of course, you could just choose to do nothing -- active surveillance -- and hope for the best or some new "discovery" that will be better than what's already out there but then you run the risk of the cancer expanding in the meantime. However, choosing to do nothing is not the same as doing nothing because you just can't decide to pull the trigger because of all of the different options and studies out there -- that's paralysis by analysis which should be avoided, if at all possible.

Whatever you do, I wish you the best. Good luck!!!

robert1 said:

Biopsy results
Hello Hopeful:

My Gleason is 3+3=6. Eight of the 14 cores were positive with involvement of 5% to as much as 80%. No symptoms. Normal size prostate.

My staging has been interesting to me because my Gleason is relatively low. all DRE's have been negative, PSA is 3.5, but I have lot's of disease involvement.

I beleive most experts would catagorize me as an intermediate risk (T2b) rather than a low risk (T1c) due to the number of positive cores. Some have suggested that this staging would point more towards IGRT+seeds rather than PBT. Both look like aggressive treatments to me.

Thank you for your help!

Robert

Robert; Congratulations for having a decision
Abaixo

Look at what's know on the bad sides.

X-rays and gamma rays (brachytherapy) are known carcinogens. Why would you have that when they do not differentiate

about where they impact healthy tissues outside the prostate? The reason the studies keep trying

for 12 years is the secondary cancer that arises from xray/gamma ray at about 10-12 years.

 

Prorton beam is likely also carcinogenic as it kills cells the same way, messes with DNA. But

the beam will only impact the prostate and any margins around it they decide to shoot for.

You don't see the secondary cancer in 10-12 years from proton beam therapy.

 

Eliminate the worst case.

 

Richard