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My Proton Therapy Journey Has Finally Started

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Posted 7/28/2011 11:24 PM (GMT 0)
Today I traveled to Indianapolis to the IU Health Systems urology department to have a gold marker placed in my prostate. I was a bit nervous about the procedure, but it was far less stressful and painful than I had anticipated. It took only a few minutes and I was done. The normal prescription for 5 days of cipro was given. I have to say that everyone I met at IU was extremely courteous, polite, and professional. Every question was answered, and my concerns were confidently reassured. I left feeling that I had been treated well, to say the least.

Then, on to Bloomington for my body cast molding. Again, everyone was incredibly nice, polite and professional. Took time to answer all my questions, and to explain exactly what they were doing and why. The casting process actually took only a few minutes, and then, done. Next Thursday I return to check mold fit and to have my CAT scans, in order to 3d image my prostate and develop my treatment plan.

The entire day turned out to be a very positive one. I feel better than ever about my choice of treatment, and my place of treatment. They are professional, courteous, polite and caring. What more could one ask for?

Steve
Posted 7/28/2011 11:50 PM (GMT 0)
Good luck, as your true journey has now begun
Posted 7/28/2011 11:59 PM (GMT 0)
Steve,

Gklad it has been sucjh a positive experience. Best of luck to you. Keep us posted...
Posted 7/29/2011 1:09 AM (GMT 0)
It's very reassuring to be treated so well in unfamiliar and somewhat threatening surroundings.  Good people really make a difference and calm the nerves.  Congratulations on a good start.
Posted 7/29/2011 1:32 AM (GMT 0)
I know you are pleased to be starting your treatment. The waiting just drives some of us crazy! Best of luck and to keep us posted.

Cajun Jeff
Posted 7/29/2011 2:27 PM (GMT 0)
Skeeter,
Best wishes as you continue on this journey, My dad had the Proton at Loma Linda back in 1997 and is doing very good still. He lives in North West Corner of Indiana.

Has any one told you about the balloons yet? You might want to google 'brother hood of the balloon'. Its part of the treatment plan with Proton. A balloon is filled with water and inserted into the rectum right before the proton is 'turned on'.

lewvino
Posted 7/29/2011 4:24 PM (GMT 0)
My neighbor had proton treatment at Loma Linda over 8 years ago. He has been free since. I would have considered the treatment but I would have been away from home too long. Wife was/is battling Crohns and last year it wasn't good.
I wish you luck on your journey.
Posted 7/29/2011 6:31 PM (GMT 0)

lewvino said...
Skeeter,
Best wishes as you continue on this journey, My dad had the Proton at Loma Linda back in 1997 and is doing very good still. He lives in North West Corner of Indiana.

Has any one told you about the balloons yet? You might want to google 'brother hood of the balloon'. Its part of the treatment plan with Proton. A balloon is filled with water and inserted into the rectum right before the proton is 'turned on'.

lewvino

Yes, I am aware of the balloon. I get my first experience next week at the CT scans. At IU they fill the balloon with barium. Good to hear your dad is doing well. Did Dr. Smith do your surgery at Vanderbilt?

Steve
Posted 7/29/2011 6:53 PM (GMT 0)
Yes, Dr. Smith was my surgeon and did a great job. Used 0 pads! Having great success with Levitra.

Lewvino
Posted 7/30/2011 12:41 PM (GMT 0)
Good Luck on your treatment. When I was diagnosed back in April I discussed Proton Therapy with my URO and he had a family member who was successfully treated at MD Anderson. He told me I was a good candidate for it, but my insurance company (BCBS of Alabama) still considers it an experimental treatment and will not cover the cost. It also would have been very hard for me to be away from my business for 6 to 8 weeks for the treatment. The closest Proton centers are at the Univ. of Florida. I would have had a hard time justifying the cost as well.
Posted 7/30/2011 6:03 PM (GMT 0)
The IU proton therapy center is about 160 miles from where I live in Kentucky. Fortunately for me I am now retired and thus can take the time to spend 9 weeks in Bloomington to be treated. I had to go through a grueling 3 month, 4 level appeal process in order to get approved for treatment, so I understand what you are saying about insurance. I will have to pay for my lodging and food, of course, but I feel it is worth it to be treated with protons rather than photons.

Steve
Posted 7/30/2011 6:26 PM (GMT 0)
 

I have heard that several BCBS insurance programs in other states will approve proton treatments as will Medicare but not in Alabama. I think Indiana is one of the states BCBS will cover the cost. It seems like states with proton facilities have better insurance coverage for PT. I talked with a fellow PCa patient from Alabama who spent over 2 years appealing with BCBS of AL and got nowhere, which convinced me that it was fruitless. This guy was in the process of moving to Calif where proton treatment is covered by Calif Medicaid. The sad thing if I had insurance that covered the treatment I had the travel costs covered by an AFLAC cancer policy I bought 5 years ago. Oh well since i had the RALP last month it is all over anyway and not worth crying about.

Posted 8/4/2011 9:34 PM (GMT 0)
Round 2: I traveled back to Bloomington today to have my CT scans done in preparation for the manufacturing of my lens for the proton beam, which is done apparently via a 3d model made of my prostate using the CT scans. As a part of this process, I had my introduction to the "joy" of the rectal balloon. Here is the truth about this part of the process.

The ballon is certainly not comfortable, but neither is it painful. Once inserted and filled with fluid, you really don't notice it "that" much. The young nurse who handled this was very nice, very caring, very much aware of how "stressful" this part of the process can be.

One thing for sure, we give up all our "dignity" when being treated for PCa.

But, bottom line is the rectal balloon is nothing to worry about if you are considering proton therapy.

Steve
Posted 8/5/2011 11:47 AM (GMT 0)
I am really envious of you and today I think I found out why BCBS of Al will not pay for proton treatment. The surgery and robot bill from the Hospital was  a little over $53,000 and I got my payout statement from BCBS and they only paid the Hospital $9138 less my $250 room deductible, I was shocked at how little the Hospital agreed to take for the procedure. When I looked into the proton at the Univ of Florida I was given an estimate of $70,000+ for a 6 to 7 week treatment.

Good luck on your journey and continue the updates from what I have read proton treatment for PCa will someday be the new gold standard for treatment.

Terry

Posted 8/5/2011 8:53 PM (GMT 0)
If anyone is having problems getting insurance approval for proton you can go to protonbob.com, click on "Contact Us" and then email the person shown.  She has an insurance file that will help guide you through the process - it has helped many men.  Medicare does not cover experimental treatments -- Medicare covers proton.

Dutch 

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