Proton Beam consultation at MD Anderson in Houston questions

I am heading down to the MD Anderson Cancer Clinic to consult with Dr. Lee on May 31, 2012 about Proton Therapy for my prostate cancer. My insurance company will cover one consultation visit.

My interest is in the pencil beam proton therapy offered at MD Anderson. Since I have only 1 visit approved by my insurance company (Health Partners), I want to prepare a list of questions for the visit.

I would welcome your suggestions as what questions I should ask Dr. Lee and other MD Anderson personnel.

Here are a few starter questions/topics (in no particular order) I want to address at MD Anderson during my consultation:

1. How many PCa patients have gone though proton beam therapy at MD Anderson?
How many (or percent) are labeled as “cured”?
How many (or percent) experienced a reoccurrence of PCa after proton beam therapy?
What therapy options are available to patients who encounter a reoccurrence of PCa?

2. What are the differences, advantages and disadvantages of using pencil beam therapy rather than any other form of proton beam therapy?

3. What are the chances of incontinence or impotence with pencil beam therapy?

4. What other side effects (major or minor) can occur with pencil beam therapy?

5. Are there delayed side effects that can appear over time?

6. What are the advantages and disadvantages of proton beam therapy compared to other forms of PCa therapy?

7. What kind of follow-up can I expect after treatment?

8. Are there any additional tests other than PSA and a biopsy to better determine the stage and aggressiveness of my PCa?

9. What assistance is available to PCa patients from MD Anderson in the event a request for proton beam therapy is denied by my insurance company (Health Partners)?

Please add your questions to this very incomplete list.

Thank you.

Your first question uses the term "cured" without saying what "cured" means. I think you'll want them to define what they consider successful treatment. 10 years cancer-free, 15, 20?

Do side effects count in their evaluation?

Those are good questions, and I would like to hear what MDA has to say as well.

Concerning assistance in case of the need for an appeal of insurance coverage, I do know that it varies from institution to institution. I had proton therapy treatment last year at IU Health at Bloomington, Ind. I had to go through a 3 month insurance appeal, and IU Health handled virtually the entire appeal on my behalf (at no expense to me). The lady handling the appeal on my behalf was fantastic to work with, and very knowledgeable of the ins and outs of appeals.

Just pointing this out so that you would know there are facilities that will help you in the case that MDA does not offer this service.

Good luck and I hope everything goes well for you.

Those are some very good questions. I just wanted to let you know that I went to MDA Houston for a second opinion. . I took my motorhome and stayed in an RV Park only a few miles away and it worked out wonderfully as I was there for about 3 weeks and saw no less than 5 Dr.s. I also got 4 differing opinions. This RV park is for mostly patients that are going to the large medical area, that MDA is only a part of. My neighbor was doing proton therapy daily and you could not tell that he was a patient. He was around 68 and in pretty good shape already, but he and his wife exercised daily at the gym.

I also wanted to let you know that a friend of mine was a liver patient at the VA while I was there and he wanted to go to MDA instead. I spoke with a rep. from MDA and she told me that this was possible at no cost to my friend. So, MDA will work with your insurance if you need them to.

Your first visit includes free valet-I would take advantage of it. I ended up getting treatment in San Antonio for family reasons. GL

I also hope that when you get back, you will post the answers that you are given.

Imtls, hope you are OK. Can you let us know how your visit went? I'm going to MDA as well.

MDA installed their proton cyclotron in 2006. So how many prostate patients have been cured is still an open question..

With most prostate cancers, "pencil beam" may not be the most effective treatment....