Week #1 of Proton Therapy at IU

Week #1 Report of my Proton Therapy Treatments at IU @ Bloomington (http://iuhealthprotontherapy.org/about/):

Arrived Tuesday afternoon to check-in at Jill's House (http://www.jills-house.org/), where I will be staying for the duration of my treatment. Very nice volunteer got me checked in and helped me move my stuff into my room. Quickly came to learn that there is a whole lot more to proton therapy than just prostate patients. Jill's House is full of families with small children being treated for all sorts of very mean brain and spinal cancers. I almost feel guilty about being there.

Wednesday afternoon I had my final pretreatment meeting with my radiation oncologist, who went over all the possible bad things that could happen, as well as the nuts and bolts once again of how they would be treating me. I signed the consent and that was that. Then they ran me through a simulation of a treatment, which at the time I thought was maybe a little bit of overkill. Turns out it is a good idea, as they take a little extra time to carefully explain each step of the process to you. This is to ensure you have some idea of what is going on as it happens.

Thursday and Friday were the first two days of actual treatment. As I have posted before, the "balloon" is not painful, albeit a little uncomfortable. I refuse to be embarrassed about the process of having it inserted, as I (and they) know it is there for a reason (to protect the rectum). IU has 3 techs in the treatment room getting me ready each time. They are efficient, and get me positioned as quickly as possible, but never hurrying. Position is the big thing here. The patient has to be properly positioned for the beam to be effective. Besides the internal marker, I am x-rayed each day to ensure proper alignment. Once alignment is confirmed, actual treatment takes only a minute or so. Once the treatment is finished, the techs return and quickly remove the balloon, release the body mold, and help me off the table.

There is absolutely no pain, no discomfort, not even an awareness of when the actual beam is being transmitted. It is kind of an amazing thing to be a part of. For me, it is just beginning. Two down, and forty-two to go!

Steve

Skeeter, great to hear that your first week went so well.  I hope you will keep this journal up to date so this can be shared with other HW members as they consider alternative treatments.  I trust you know of the "Brotherhood of the Balloon" which, other than having the "insertion" in common, has done a lot of fine charitable work.  Soon you will be a full fledged member...!

Good luck for continued good progress.

Tudpock (Jim)

I had a combination of proton and external beam radiation at LLU in souther CA. LLU pioneered the proton treatment in the US and I am delighted to see so many new proton centers starting up.

I have a brother who has just been Dx with PC- I have been highly recommending proton to him. IU is a lot closer to him then southern CA is. The BOB- brotherhood of the Balloon- is a great expereince, isn't it!! I took it as just part of the PC thing and didn't waste much energy on the embrassment stuff either. I just had an AUS installed two weeks ago- that modesty stuff is long gone!

Again, thanks for sharing your proton treatment with us.

-Trew

Steve,

Sounds like you are off to a good start. Hope all goes well. Keep posting, as your progress will help others in the future.

 

One of the big differences between the IU Proton Therapy Center and the others is simply the fact that it is located in Bloomington, Indiana. Bloomington is a relatively small town in central Indiana that happens to have a major, high-quality university located in the middle of it. This means that Bloomington has access to a way of life that other towns similar cannot imagine, while still retaining (to some degree) a small town feel.

The Proton therapy Center is located in sort of a park, bordered by a high-level retirement complex and a recreational area. Very quiet, very nice atmosphere. I have heard some folks say that one reason they came to IU over one of the other proton centers was the very fact it was in a small town and not a big city.

The other big thing I think that IU has going for it is the incredibly personal care they give to each patient . I have been overwhelmed by the care I am receiving from literally everyone at the Proton Center. Whatever way you want to describe them, i.e. kind, caring, considerate, compassionate, funny, professional, etc., would be appropriate. They are all of those things.

There is no doubt that when I leave Bloomington in late October, I will leave with a very high regard for for the city and IU.

Steve