Update...Still Waiting.

It seems like it's been a while since I have posted, but not much has changed since my last post. We've met with all of my doctors over the last two weeks, and are continuing to explore our options. Shana and I had a conference call with Dr. Butrynski last week and he explained, in detail, the decision to not have surgery.

As I explained before the decision that surgery will not benefit me is based on the fact that the cancer has metastasized (spread) outside of the primary tumor. In my case it's in four places, but I was told that it doesn’t matter whether it's in one spot or ten spots, the fact is that the cancer is in a stage where surgery doesn’t make sense, especially a surgery as major as the one they were discussing for me. This decision is an admittance from the doctors that they believe I will die from this, therefore curative treatment (surgery) is off the table. It's also been explained to me that right now my quality of life is pretty good and they don't want to make any decisions that could change that. Obviously I am disappointed and frustrated with this. We've only received good news since I have been diagnosed - every scan I have had has come back with good news (tumor shrinking, no new cancer spots). It's hard for me to understand why they didn't say this (no surgery) back in October, as nothing has changed since then that would impact the strategy. They never told me they could cure this, so I never had those expectations, but they did tell me they'd be as aggressive as possible to try to help me beat this. I feel that not doing surgery is a conservative approach that carries little risk, and is aimed at giving me a decent quality of life, but not the longetivity I'm looking for.

Though I am disappointed, I understand the decision, but I haven't accepted it yet. The proton beam radiation team at Mass General is reviewing my case this week and determining whether this type of radiation would benefit me (and if the benefits outweigh the risks). This treatment is the most expensive medical treatment available and is only available in five places in the US (I found that interesting). It's able to deliver radiation with minimal damage to surrounding tissue, but that doesn’t mean it won't do permanent damage to my heart, as the fact that my heart is constantly moving (beating) makes treating it tricky. From what I am hearing from my doctors now, I shouldn't be concerned with long term damage to my heart because it's not going to matter (they don't put it quite so bluntly). I'm approaching this with an open-mind, however, and will wait until my consultation with the proton beam specialist at Mass General.

We've also decided that it couldn't hurt to get another opinion. My doctors in Boston consulted with a doctor in Houston (Dr. Michael Reardon) who specializes in removing heart tumors. His opinion was that surgery has no benefit to me at all, but even so, if he's the expert, I want to meet him. There is also a cancer clinic in Houston (MD Anderson) that has a lot of experience with Sarcoma, so we figure we might as well make a trip out of it and try to get a consultation with one of their oncologists while we are there. We are currently working on getting them the info they need and I'm hoping to go there for their opinion sometime in the next two months. This doesn't mean I've lost faith in my current doctor. He's done a tremendous job, and the plan he came up with for me has worked better than we expected. I just want to talk to as many experts as possible as this is pretty important.


So, for now, I continue to get chemo every Friday (I have #29 this week) and we are waiting to go back to Boston to meet with the Proton Beam specialist and are trying to plan a trip to Houston for another opinion. The cumulative effects of the chemo are starting to show themselves to me as I am getting some minor neuropathy (numbness) in my hands and feet and I am still tired all the time no matter how much sleep I get (when I sleep). My attitude is still great…Shana and I are staying positive, keeping our heads up and approaching this like we have since day one. Thanks for checking in and I will not go three weeks without posting again, I promise.