We were back to Boston this week and had a pretty positive meeting with Dr. Chen at the Proton Radiation center and Dr. Butrynski (my oncologist at Dana Farber). It seems the more information we get and the more we learn about my situation, the more confused and frustrated I get about what to do about it.
The proton beam radiation is a very interesting option. I have to say I feel a little better about the possibility of getting radiation directly to my heart, but its still not ideal, even according to Dr. Chen. As I've said before, Boston is one of five places in the US where you can get proton beam radiation and in six years they've only treated 18 patients with radiation directly to the heart. The benefit of radiation is that there is a 70% chance they can kill the tumor without having to put me through a very major surgery, but there are a few issues. First, it's a one shot deal. Once I have this radiation, I can never have it again in the same spot on my heart and cardiac tumors have a high recurrence rate, so if it returns a second time, radiation won't be an option. Second, surgery will be much more difficult to do because of the scar tissue the radiation will create (but not impossible). The damage done to my heart won't be as bad as it would be with other types of radiation because they are confident they could deliver this radiation without hitting my ventricles (the pumping chambers of the heart). They would hit my tricuspid valve, which could mean future valve problems, and because the radiation field would likely hit my entire atrium, it could cause significant conductive problems with my heart. These are all manageable however. The caveat given by Dr. Chen is that they only have six years of data to go by, to the long term effects aren't known like they are for other types of radiation. We were very impressed by this option, and IF surgery ultimately isn't an option for me, I will probably accept this treatment. If I do that will mean two things. First, roughly 10 weeks off of chemotherapy (scary) and second, seven weeks in Boston (like were not there enough).
Now, about the surgery, Dr. Butrynksi talked to us for over 2.5 hours yesterday, and much of that was spent discussing the decision to not do surgery. He did confirm that surgery is the best option, but explained the many individualized reasons why it might not be the best option for me (and explained why his colleagues believed this). One thing that is clear, Dr. Shakar (the surgeon in Boston) will not operate on me. We are meeting with Dr. Reardon (known as an authority on heart tumor surgery across the country) in Houston and Dr. Butrynski said that if he agreed to operate on me than he would support it. I am not going to get my hopes up, but I am glad that there is a possibility that I will be able to have surgery AND keep Dr. Butrynski as my doctor.
He also mentioned something interesting, and said one difference about my case that may give me an advantage is the fact that the metastatic disease hasn't spread to any of my soft tissue organs. He said that most commonly (still VERY uncommon) the disease spreads to the liver or the lungs, and the fact that it's only in my bones might be a good sign. We'll see.
I'm feeling great and ready to start another round of chemo tomorrow (treatment #31). The next step is Houston (early July) and after that a decision has to be made whether or not I am going to opt for surgery or radiation. I'm really excited to get going on one of these. Thanks for checking my blog and I will post again soon!