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.