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Does anybody have an opinion to share about Proton Radiation?

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Posted 6/17/2007 3:09 PM (GMT -7)

I will be making my first decision on treatment this week.  Of all the treatments that I have read about this seems to have the fewest side effects.

Posted 6/17/2007 5:17 PM (GMT -7)
Hi Walt

I elected Proton Radiation Therapy and have fully explained my reasons in my thread entitled "Proton Radiation Therapy--My Journey With Prostate Cancer".  My reasons for selecting this treatment may not necessarily be the right treatment decision for all PCa patients.  If I had to do it all over again, I would do the same thing.  I had some mild urinary and bowel side effects during treatments which disappated soon after the treatments were completed.  Compared to surgery, I can say that the treatments have had no major negative impact on my life and things have pretty much returned to normal as they were before treatment.  Of course, with radiation treatments it can take up to two years after the treatments have ended to get to the nadir (or expected low point) for PSA readings, if they succeeded in eradicating the cancer.  Good luck in your decision!

https://www.healingwell.com/community/default.aspx?f=35&m=726381

Dave

 

Posted 6/17/2007 6:19 PM (GMT -7)
Many thanks Dave for pointing me to your link. With only Calif, Boston and Florida offering this it seems like it really has to be head and shoulders better than all other alternatives for a guy from Pittsburgh to go that route.
Posted 6/17/2007 9:58 PM (GMT -7)

Walt:

My proton treatments were 6 yr ago at Loma Linda.  I chose proton expressly because of the minimal, if any, side effects.  To date, I have had no side effects and will be having my 6yr PSA tomorrow.  I also have a thread on Bluebirds "Helpful Hints" thread.

Best of luck for the treatment that is right for YOU.

Dutch

Posted 6/17/2007 11:48 PM (GMT -7)
Hi ~ Walt,   Welcome back!! I’ll attach Dutch’s thread and the Helpful Hints thread…here ~ for others who will be reading this in the future. (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there)   A Proton Radiation Experience Dutch   Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)   Our thoughts are with you as you move forward. In Friendship ~ Lee & Buddy  
Posted 6/18/2007 4:39 AM (GMT -7)

Walt,

Don't know if this helps, but there is also a proton facility in Bloomington, Indiana (Indiana University).  Good Luck!

Posted 6/19/2007 7:21 AM (GMT -7)
Hi Walt

I had my treatment in Boston because it was nearest to my home (less than 200 miles away). I had the advantage of staying with my married daughter who lives in the Boston area. It may be the closest to you and it is one proton center that has been in operation for a long time (the older facility was replaced with a new one in approximately 2001). The centers in Florida and Texas (MD Anderson) were opened in 2006. I don't know anything about the center in Indiana or how long it has been in operation. If you would like to know more about the Boston facility, I would be happy to discuss it with you via phone or e-mail. Let me know and we can go from there.

Dave

P.S. It seems that there has been a recent rash of postings about Proton Therapy! You might want to read the postings here if you haven't seen them before.

https://www.healingwell.com/community/default.aspx?f=35&m=839997
Posted 6/19/2007 11:56 AM (GMT -7)

Walt and Dave the problem with the new centers in TX and FL and IN are that they are using very aggressive criteria to select initial patients for treatment. There are several reasons for this the first being that they typically only have one treatment area open for PCa use. It can take many months to validate the gantry and accumulate enough data to get FDA approval for actual patient treatment. Another reason is (sad to say) that they are going to cherry pick patients in the beginning so that they can show some success at the facility. So while you or I may be candidates, someone with a PSA over 10 or a 8+ Gleason will generally not be accepted. One of the mentors I talked with who was treated at Loma Linda initially applied at the new facility in TX but was turned down due to high PSA (>15). I can understand wanting to stay close to home as the big problem for me will be living out of state for 2 months and the associated expenses. Should be my only out of pocket costs though as insurance will cover the treatment in full. Seems like all the years of double insurance coverage are finally paying off.

I know of several more facilities that are under construction and due to come on-line in the next 2-3 years including one here in the Seattle area (2010), but waiting that amount of time is not viable for me or most of us here. The others I know of are in Philadelphia on the U of Penn campus (2009) and one in OK that is in the planning and early construction stage and online in 2011? there is also a lot of research going on at the moment regarding producing protons with laser beams instead of a syncro/cyclotron and the attendant structural mass required to control and contain the accelerator. Several Euro companies are also looking at mini cyclotrons which do not require massive structure to house. The future looks promising for Protons.

Posted 6/19/2007 2:39 PM (GMT -7)
John and others

I felt fortunate to be accepted at the Proton Center in Boston. Much to my surprise I found out after I got there that they only allot a maximum of 12 patients for PCa treatment every eight weeks, notwithstanding that they have three full time gantries. When I was there, I think the total patient count was 10 or less. I think that most of the Proton Centers are probably very selective, but I think that Loma Linda may offer a greater chance for acceptance because PCa is their primary treatment with proton, whereas the other proton centers allocate the majority of their treatment time to patients with all other types of cancers. I doubt that I would have been accepted at the Boston treatment center if my stats had been any higher than they were. I doubt very much that they accept patients with a PSA exceeding 10 or a Gleason score of 8 or higher. There are too many others patients will lower scores that they can readily accept which makes it look better for their track record. That is the way of life unfortunately.

Dave
Posted 6/19/2007 5:19 PM (GMT -7)
Many thanks to all of you.

I just met with my Uro to get the full follow-up after my biopsy. It was so shocking that I am going to start another thread entitled, "The power of this site."

Without the background that this site provided I would be a lost puppy.
Posted 6/19/2007 5:49 PM (GMT -7)
Walt

It is gratifying to hear you say that this forum has been so helpful to you. That's why we are here--to get help if we need it and to return the favor by helping others in their moment of need.

Dave
Posted 6/19/2007 7:00 PM (GMT -7)
Walt,

I am one of those that considered proton beam but ended up going Da Vinci. The only reason was that I could not handle mentally the mystery of knowing whether or not the cancer was gone. With surgery I got the post op pathological analsysis that thankfully told me that my cancer was contained to the gland and it was removed. If I could have dealt with the constant PSA's and being on the edge for each one then I would have gone proton beam. If all the radiation treatments I would only have tried the proton beam due to the very positive experiences of a lot of men with it.

Tamu
Posted 6/19/2007 7:40 PM (GMT -7)
Walt,

Tamu makes a good point! I think it is the reason why so many men in their 50's and younger opt for surgery. My initial choice was robotic surgery. The more I thought about the invasive nature of prostate surgery and the potential adverse side effects (incontinence and impotence) at my older age, the more I focused on quality of life which was the most important thing to me. Having to wait 18 to 24 months to reach the PSA nadir (i.e., low point to hopefully signify that the cancer is no longer there) doesn't really concern me. Also, the radiation treatment normally goes beyond the prostate to cover the margins to some extent. With surgery, if the cancer has gone into the margins there is no guarantee that the surgeon can remove all of the cancer. The next step would then be radiation treatment after surgery, depending on the circumstances. Even with surgery that appears to be successful (i.e., the cancer is supposedly contained within the prostate), the cancer can recur down the road. In conclusion, removing the prostate is not a 100% guarantee of a cure and the side effects are not pleasant to deal with as evidenced by the numerous postings here from surgery patients. I greatly admire the men who have the surgery and have to brave the side effects and hopefully overcome them down the road. This forum comprises mostly surgery patients (as any reader will soon find out) and it has been a godsend for them sharing information and supporting each other during a difficult period of time. A few of us radiation guys have come in here to also tell our story!

Dave
Posted 6/19/2007 8:02 PM (GMT -7)

Dave,

Well said . You beat me to the punch as I was about to make most of the same points. My feeling is that being in my early 50s with 25-35 years more ahead of me the side effects of surgery and photon radiation are simply unacceptable. Could I deal with it? Sure. Do I want to? No.

In my case the Sloan-Kettering nomogram shows 50-50 chance that the PCa has already escaped the gland, so treating the margins makes the most sense to me and my wife and gives the best chance for me to avoid recurrance 5,10 even 20 years down the road. All of us are different and what works for me will not work for all. But that is why we post so the people that come here see that there IS a choice.

 

Posted 6/19/2007 8:11 PM (GMT -7)
Thanks again Dave and Tamu.

As I digest what you say, my thoughts are this. I would still opt for the Proton Radiation strickly because my pc is early and minimal. I probably won't get that opportunity because my healthcare is 20% cost to me outside of the Pittsburgh region. Aside from that, posts are saying that with my Gleason at 4+4 only Cailornia may accept me as a patient.

With the above in mind my fallback position would either be beam radiation or DaVinci. I will make that choice after I am blocked from my first choice.
Posted 6/19/2007 8:27 PM (GMT -7)
Hi Walt

It would seem that your insurer should make an exception and cover the 20% of treatment costs outside of your home area because proton therapy centers are not in every town! I suggest that you work with your employer and see if your insurer can make an exception to cover the 20%. If they cover proton therapy, but don't cover it outside of your home area doesn't make much sense. I understand that some insurers refuse to cover proton therapy for whatever reason. I am sure that the high cost is certainly one reason. There are always roadblocks in life unfortunately. Good Luck!

Dave
Posted 6/19/2007 8:37 PM (GMT -7)
Walt,

An appeal process exists for the insurance issue. My wife's insurance says no way, no how when approached about paying, but it turns out that they DO pay for this procedure as they are mandated to cover it for Medicare patients. Well, I am not old enough yet to qualify. So I call on my insurance to cover it and at first it looks like they will only cover 80% due to it being out of state. Well 20% of the $37,000 or $44,000 cost of the procedure is $7400 or $8800 dollars to me, it would appear. (The numbers are the cost I have been quoted by Loma Linda, though Medicare gets a break, they only charge the Fed $21,000) Well appearances are deceiving, like so many things about this disease. Loma Linda is part of the Blues Network and the Regence I carry through work is also a Blue Shield/Cross member. So for an out of state in network benefit Blue Shield/Cross will pay 80% till a $2000 deductable is met and then will pay 100%. Then I will get the wife's insurance to cover the 2 grand on the basis that they would have paid way more than that for me to have prostatectomy and subsequent follow-ups.

Do not get discouraged, do not take NO as an answer from your insurance. Have a 2nd opinion done on the pathology. It is highly subjective. Call Loma Linda and send them the info that they will request from you. It may take some time to collect it. Let them follow up with your insurance. They have people that do this every day. Above all do not give up!!
Posted 6/20/2007 5:07 PM (GMT -7)

Hello my friend, I was in a similar boat to you, did my research including having a consult with Dr. Luu at Loma Linda Proton center, ultimately decided to go with Robotic prosectomy at City of Hope. I hade the surgery in May and my recovery was quite uneventful. The only "problem" Im having is with regaining erectile funtion but that too is coming along slowly but surely. Good luck to you.

Chip 

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