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IMRT+ Brachytherapy vs. Proton Beam Therapy

robert1
Posts: 82
Joined: Apr 2011

It is decision time, and the only two choices to make the cut so far are the combination of IMRT (IGRT)+ Brachytherapy or Proton Beam Therapy (PBT).

PBT looks so good and clean, and my insurance will cover it, but it is impossible to find more than one long-term cure rate study (which isn't that great) and long-term side effect information. The UF facility says they will probably be going to a 29 session therapy (from 39 sessions) now at an elevated dose of 2.5Gy per session. Loma Linda may be going to 3Gy per session! During my visit, they told me they have learned that the "cell kill rate is even better with fewer higher doses", and side effects remain quite low. PBT survivors are fans of the therapy unlike any others. I have spoken to many, and the stories and endorsements are way more positive any other therapy choice.

On the other hand, the IMRT+Brachytherapy guy (the well known John Sylvester) says he will publish a 99.1% long-term cure rate in the trade publication Cancer later this year. Wow!

I hoped a decsion would be more clear at this point, but it isn't. It may be that either decision is a good one.

By the way, my PSA has dropped to 3.5 from 3.96 in the last two months. No reason I can think of. The last DRE a week ago was negative still.

Wish me luck, and best wishes to all!

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Robert, As you most likely know Loma Linda has the MOST Experience of any of the centers with Proton Beam. They were the 1st to offer treatment. My own dad was treated there in 1997. My daughter starts medical school at Loma Linda this August! So I'm very familiar with them and they do offer great care and fellowship for the prostate cancer patients.

Have you checked with your insurance to see if they will pay for 'proton'? That may weigh into your decision process also depending on your finances. My insurance would not pay for proton.

Best wishes though as you have asked for!

Larry

robert1
Posts: 82
Joined: Apr 2011

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

hopeful and opt...
Posts: 1331
Joined: Apr 2009

Can you repost your biopsy results?

About a year ago, I had read in th US Too Prostate Cancer and Educational HotSheet www.ustoo.org that Proton Therapy although more expensive is no better(or worse) than other therapy.

robert1
Posts: 82
Joined: Apr 2011

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

VascodaGama's picture
VascodaGama
Posts: 1562
Joined: Nov 2010

Abaixo

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

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

Swingshiftworker
Posts: 634
Joined: Mar 2010

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
Posts: 82
Joined: Apr 2011

Hello Swingshift:

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

Thanks,

Robert

Swingshiftworker
Posts: 634
Joined: Mar 2010

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.

bewarren
Posts: 1
Joined: Jul 2011

I had Proton Therapy at Oklahoma City's ProCure Proton Therapy Center. I finished my treatments April 16, 2010. Had a PSA of 16 at beginning of treatment and 1 year after finishing treatment my PSA is 1.7.

With an enlarged prostate, my PSA had never been in the normal (4 or below) range all the years I was having it checked. The only side effect I had during treatment was slight urinary & rectal irritation. Now, my condition, as to the usual potential problems of incontenence, impotency, & bowel problems, is the same as before treatment. All the other men I know that had proton therapy have no or very minor after effects from the treatments. The same is not true for the men I know that chose other treatment options.

I highly recommend Proton Therapy because of the lack of side & after effects.

Some really good resources: http://www.protonbob.com/proton-treatment-homepage.asp &
http://protonpals.net/. There are many success stories on these sites. Be sure to read Bob Marckini's Book "You Can Beat Prostate Cancer".
I wish you the best, God Bless You!!

robert1
Posts: 82
Joined: Apr 2011

Hello Bewarren:

Thank you for your post.

My studies have pointed to a potential pattern of late onset (2-3 year) impotence/ED with brachytherapy and external photon (x-ray) radiation. This side effect looks to be as high as a 50% rate, and PBT shows no such pattern. Does this make sense? This is one reason for the continued consideration of PBT. Was this your finding also?

Thank you,

Robert

Silverstreak
Posts: 4
Joined: Jul 2011

Just completed 44 treatments at new Proton Center in Chicagoland / warrenville Ill. opened last Oct w/ 115 people completed so far ..mostly Prostate treatments but they do offer treaments for MANY other types of cancer .. I looked into all options that a major hospital gave me ...But I kept looking and by luck found PROCURE ... had a great support staff there and bonded with fellow prostate patients ... Continued with very day life ... NO side effects what-so -ever ... takes no longer than 10 minutes per day from time you got out of your street clothes til you were putting them back on ... Have a 30 day follow up coming soon ... No PSA test for 3 more months ?? but talking with others I'm extremely confident I selected the right option ..Note met a new patent there who had a few years ago his prostate removed only to now be getting Proton treatment since there must of been cancer cells in the Cavity ..( didn't get them at time of surgery ?) Said he wished he knew about Proton threatments before since he would never gone with the surgery. With Proton only treat the prostate and a VERY VERY small area around ... have a beam that does not turn on till it gets to prostate itsef and they shuts off ..nothing BUT prostate saving nerves , other organs etc .... Get in touch with them ... Surgeons MOST likely will not direct you UNLESS they area great friend and /or a close relative

Silverstreak
Posts: 4
Joined: Jul 2011

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
Posts: 82
Joined: Apr 2011

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

Swingshiftworker
Posts: 634
Joined: Mar 2010

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
Posts: 82
Joined: Apr 2011

Thank you Swingshift:

I pulled the trigger yesterday on IGRT + Seeds. One of the best doctors for this therapy (John Sylvester) has relocated to my area. He is an impressive guy with maybe the most experience and documneted track record around.

It wasn't just the vast amounts of information to process that caused me to postpone, it was also the dread of beginning any new therapy.

I'm ready! Thank you for your thoughts.

robert1

VascodaGama's picture
VascodaGama
Posts: 1562
Joined: Nov 2010

Robert

No one knows for sure what would be the outcome of one treatment when trying to compare it with the possible results of a different treatment. We always choose the best and the best outcome is always based on confidence.
You have done your researches and now should look forward on the details of the treatment (preparedness and after care included).
You have noted well in judging your case close to a T2b because of your low PSA (<4) in a voluminous cancer.
Gs 3+3=6 are typical for micro-metastasis in these cases, and IMRT+Seeds have shown to be highly effective in the treatment of the localized micromets.

Wishing you peace of mind and a successful treatment.
VGama

robert1
Posts: 82
Joined: Apr 2011

Thank you VGamma

You have been very kind and supportive, as have many people on this site. Your knowledge and presentation are very valuable to guys moving into treatment, in treatment, and after treatment. I hope you will keep up the great work you are doing.

Thank you from the bottom of my heart.

Kindest regards,

robert1

SRVR
Posts: 11
Joined: Dec 2010

At the 20th anniversary of the Proton program at Loma Linda last year I met one of their earliest patients. Despite the lack of "long term" studies, men cured with proton technology are easy to find. It's the only cure I know of that has it's own fan club.

Check out protonbob.com. It's got over 5,000 members, most of whom will be happy to talk to anybody about their personal experience. Members post their personal contact info. The testimonies and the ability to confirm them are priceless.

As a former proton patient, now cancer free, I'm very grateful to have had the proton option. I worked full time during the pain-free treatment. Had no side effects, and felt no fatigue.

IMRT is fairly easy as I understand it, but photons burn all the way through you. And brachy is surgery, but not anything nearly as invasive as RP.

Good luck with your decision. Regards.

richardlvance
Posts: 10
Joined: Aug 2010

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

 

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