Wednesday, May 27, 2009

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.

Thursday, May 7, 2009

Major Change of Plans

For the last seven days we've been waiting for a call from Boston with a surgery date…the call came today, but with the opposite of what we were expecting. I spoke with Dr. Butrynski for about an hour, and he explained to me that he (and my surgeon) presented my case to some of their colleagues, including an expert on cardiac tumors from Houston. He told me that the overwhelming consensus among this group was that surgery to remove the tumor is not in my best interest, now or in the future. For seven months we have been expecting this surgery, looking forward to it as a major milestone in my road to recovery and to learn that it is now off the table is a huge shock. Especially after being told a week ago that the surgery was going to happen this month.

The explanation that I was given is logical - basically they don't believe the surgery increases my chance of survival. A tumor resection in the heart is a major surgery, that carries major risks and they believe that the risks heavily outweigh the benefits. The primary reason for this is the cold fact that the cancer has spread to other parts of my body and tumor itself is not the primary threat to my life, as we have known all along. In most cases, people who die from this kind of cancer die when the cancer spreads to organs like the lungs or liver. So, according to the doctors, putting me through this surgery doesn’t make sense, as the tumor is well controlled and the threat is elsewhere.

The other reason is the immediate risk of surgery. First, this cancer is very aggressive and though it hasn’t grown at all during chemotherapy, they don't know what will happen when I am taken off of it, and they don't want to take that chance yet (though we will have to do it eventually). Second, there is a possibility that the surgery initiates a response from my immune system that causes all the cancer in my body to just come to life, and because the surgery leaves you vulnerable and weak, this is a very risky situation. They don't want to take this risk for a surgery they don't really believe will help me to begin with.

The new recommendation is radiation therapy to the heart. This causes me a lot of anxiety as radiation does permanent, irreversible damage to healthy tissue and when this first started I was told, very explicitly, that radiation to my heart would cause congestive heart failure (in the future) and this option would only be recommended in a situation where it would prolong my life. That's what I was told in October. I will have a consultation with a radiation oncologist in Boston (at Mass General Hospital) sometime this month to discuss the type of radiation and the risks. I will go into this meeting with an open mind, but I can't guarantee that I will agree to radiation directly to my heart. Dr. Butrynski believes they can accomplish the same thing with radiation that they could with surgery. I am told that a combination of chemotherapy and radiation has a 30-50% chance of totally killing the tumor, leaving it as a massive scar on my heart (this is called "pathological complete response"). This approach will allow them to continue to treat me with chemotherapy as well as treat the other remaining spots (sternum and L2 vertebrae) with radiation, and won't put me through the surgery.

So is this good or bad news? I'm not sure. I need some time to gather my thoughts, do some research, question my doctors and learn about the new approach before I decide. I need to meet with the radiation specialists to discuss the radiation option, and decide if it's the way I want to go. I feel that we have a few important decisions to make and we are going to take our time. My first reaction to this information was to question how the approach could change so radically in such a short period of time. Again, we've been expecting this surgery for seven months, and now, just like that, it's not going to happen. I have to come to terms with that, but in the meantime, I am going to keep moving forward and keep believing that no matter what treatment they prescribe, I will beat this.