Insurance issues and active surveilience

That's a hard decision to make about the waiting. One thing to find out right now , whether you wait or not, and that may make a difference is to discuss with the Uro and with Loma Linda if he is even eligible for the treatment. Not saying anything might keep him from it, but it's better to know now that he can get it next June, rather than waiting and then find out he never was eligible. Again, I'm not saying that he isn't or even that he is, but that's something to get determined now.

From now (8/31) to 3/2013 is essentially 6-7 months, depending on his actual birthdate. I had a similar diagnosis, and chose proton therapy at IU Health @ Bloomington, In. I had to go through a series of insurance appeals before finally getting approved. My initial diagnosis was in April of 2011 and my treatments began in late August, 2011 (4 months). I doubt that a couple of more months would make a difference, if you are certain that he would be approved via medicare.

Concerning my appeal, IU Health basically handled it for me, and I cannot say enough about their attention to detail, and their steadfast determination in fighting on my behalf.

My actual proton experience was very positive, and I am having good results so far since treatment was concluded. If you are a suitable candidate for proton, you should seriously consider it as an option.

Steve

FDA approval means they can cover it if they want to, but there is no obligation.

Wow, this sure is a surprse, perhaps I lack the experience dealing with insurance coverage. My first surprise was when they denied my Color Doppler Ultrasound Biopsy. They also denied my appeal. My doctor's office was not that much help, i went ahead anyway, still waiting to see how it will turn out. I may have to foot the bill myself.

Guess I may want to start working with LL to figure out if they will take me and see if my insurance will cover the cost.

I guess we see less side effects with Proton Beam Radiation and that is why we are leaning towards it. I know they all can have side effects but it just seems less. Even if he goes through with it he could be one of the ones that will have issues. But from the many stories I am reading from people that have gone through many different treatments it seems like theirs had less dissatisfaction afterwards. But we are still researching. So next week it could be something else, lol. I am hoping we have time to wait 9 months so if that continues to be the desired treatment it would be paid for by medicare.

JNF, I think all of us are trying to find the best treatment for ourselves whether we are paying out of our pocket or not. We are talking about our lives and quality of life after treatment. Assuming all treatments are equal in terms of cure rate, I prefer the one that is less invasive, less risky, and less side effects. Why should the insurance company prevent me from making that choice.

As stated, I never really had to use my benefits until recently which surprised the hell out of me. My insurance said that traditional Bx is equally as effective as the color doppler US so they denied the coverage. I, on the other hand, wanted to give myself the best chance of finding cancer. Perhaps they should raise the premium and not deny the coverage. Why should we not give ourselves the best chance to preseve our lives? What is more precious than our lives.

Purgatory: i have not yet decided on my own treatment, I wonder if people that have the authority to make the decision on coverage have actually evaluated the procedure beyond the statistic. Have they truly interviewed patients, do they investigate QOF after treatment.

Still remember men should not test for PSA?


Akai

What other treatments have less ED and Incontinence issues? Just in case we need plan B. Where is best to obtain this info without it being tainted by someone wanting there treatment to look best. Thanks.

Proton Therapy is known for it's pencil thin beam. That is why it is so good for many childhood cancers, and those of the head and neck where absolute precision radiating small tumors is of the utmost importance for cancer control and limited damage to surrounding benign tissue. Prostate cancer is more often multi-focal with several tumors throughout the gland. Read the signatures on this forum and you will see that the norm is that several cores were positive on the biopsy. IMRT and IGRT project a larger band of radiation at their smallest setting and project very wide bands as needed. Thus it can often provide a better field of radiation than Proton.

Be careful what you read about side effect differences. 10-15 years ago when photon external beam did not have the advantages of IMRT/IGRT/DART technologies the beam was not as controlled and more side effects form vicarious damage resulted. The current form of photon based radiation is much more controlled and there is no evidence that it inflicts any more damage resulting in side effects than Proton.

The big push for Proton Therapy for prostate cancer is, in my opinion, economic. These centers are tremendously expensive to build, upwards of $250 million! That is why there are only a few dozen in the world. The cancers they are best for occur far less than prostate cancer. Thus they need to attract a more common cancer to treat in high volumes to pay for the facility so the less common cancer, in very low volume, that truly does better with Proton can be treated.

We all have to make decisions about our treatments and costs. Plus I believe that we have to better understand that third party payors (insurance companies, the government, etc.) have a say in this in order to control treatment costs and ultimately our premium costs that we all think are too high already. Their decisions don't always make sense or satisfy our own concerns however, and then we have to decide what to do. For example, my wife has been going through treatment for her second round of breast cancer in the last two years. A series of drugs (Aromotase Inhibitors) are prescribed for at least five years. The first four they tried gave her debilitating side effects and she could not stay on them. The one that is indicated to have the least side effects is only approved for late stage metastic, which she is not, and our insurance denied the use. It is very expensive, $2,000 per month, for 5 years....you do the math. After several appeals that even had her oncologist making numerous phone calls and providing research studies supporting the use, I worked out a deal with the insurance company. I pay $500 per month for it, they pay the rest, and will pay more of the cost if her doctors provied them with very detailed feedback. For us the cost is worth it because the side effect relief was instant and she is fully functional now. Sometimes if you just have to have exactly what you want you have to pay for it yourself.

Finnman:

If you would like help with an insurance appeal contact [email protected].  They have an insurance appeal packet they can send you.  Best wishes for finding the treatment best for YOU.  I'm 11 yr out from proton and have never had any side effects.

Dutch