Weighing my options

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!

Quick Update

It's actually been a pretty busy week as I have had a bunch of appointments, and have a bunch more scheduled (including Boston and Houston). We go to Boston next week to meet Dr. Chen, who will discuss the option of proton radiation with us. I am looking forward to this because we will find out how much damage this radiation will do to my heart. We also get our appointments for Houston (MD Anderson Cancer Center) for the first week of July and I am looking forward to getting their opinion as well. When in Houston we are meeting with two doctors - Dr. Ravi (with MD Anderson) and Dr. Reardon, a cardiac surgeon. I am not sure what to expect from this...other than to get another perspective.

I finished up a round of chemo last week (I have tomorrow off from chemo) and start another round of six treatments next Friday. As usual, I had some scans to check the status and there were some minor issues with my scans. Dr. Scalzo was concerned because the tumor measured a half centimeter larger than it did six weeks ago and one of my lymph nodes also measured a little larger. If I wasn't going to Houston in three weeks Dr. Scalzo would have ordered another PET Scan and Cardiac MRI (these are more detailed scans)as he was a little concerned. Since I will be getting those done in Houston, though, he decided it's OK to wait until then. Another issue that my recent scan showed was a pericardial effusion (fluid around the heart). I had this when I was initially diagnosed, but it went away after treatment started, and now it's back. I am not sure what that means, or why, but I have an appointment with Dr. Gorman, my cardiologist, on Monday.

It was kind of funny because the report from the CT scan said, in the same sentence, that there was a slight increase in the size of the cardiac tumor, but subjectivley there was no change. This was explained to us that the increase was small enough that it could be attributed to the position I was laying on the table, the position of my heart or the way the image was read/measured. My only concern is that this is really the first time the tumor didn't shrink...but I am not that worried about it. The CT scan isn't as detailed as the MRI, so when I get that in July we will see what happens.

Still working full time and feeling OK. The chemo is definatley affecting me more, but not nearly as bad as it could be, so I am happy for that. The question now seems to be how much longer this chemo is going to work for. We talked to Dr. Scalzo about it and he said at this point it could stop working any time, or could continue working for another year. I hope it keeps working for as long as possible because I don't mind the side-effects of Taxol, and I'd prefer not to have to try another chemo for a long time.