Our Search for THE Doctor

After getting the diagnosis, my surgeon referred us to Dana Farber Cancer Center (DFCC) in Boston, MA. Knowing we wanted more than one opinion for a cancer that many doctors never even encounter, we started looking for other cancer centers with sarcoma clinics/departments. Memorial Sloane Kettering (MSK) in NYC seemed to also have a very good department. Then, both my Dad and Corrie Painter (whom I mentioned in a previous post) told us we should go to MD Anderson in Houston, TX.

I spent what felt like hours each day on the phone with my surgeon’s office and all three of these hospitals trying to get appointments scheduled. Between difficulties with getting my insurance verified, trying to get all my records and tumor samples forwarded, and jumping through whatever hoops I needed to, I was finally able to secure appointments at all three hospitals. We were warned that we were almost guaranteed to get very different opinions from each hospital but that none of them were wrong due to the rare nature of my cancer. Caleb and I were willing to chance it to find the doctor and treatment that we felt was best.

A week after the diagnosis, we met with the surgeon and oncologist at MSK. The surgeon was nice enough but mostly deferred to the oncologist based on the planned treatment. She recommended chemotherapy, surgery, and then more chemotherapy. This is where we were introduced the the AIM regimen, a very toxic/strong chemotherapy regimen; it is comprised of doxorubicin, ifosfamide, and mesna. The oncologist was surprisingly optimistic about the outcome, especially when compared with the fatalistic way our surgeon told us getting to 5 years would be an uphill battle. We left there feeling more hopeful than we’d been in days. I can’t say we were blown away by the doctors but we were sure heartened by the oncologist’s words about survival.

Three days later we met with the team at DFCC. The surgeon, medical oncologist, radiation oncologist, as well as nurses and fellows all piled into the exam room with us. They were all very nice and provided a lot more information than we had received in NYC. They went through all of my imaging and scans, showing us that each individual organ was clear from any metastases. They also believed that the tumor was gone and the only cells left were microscopic. They proposed surgery. Period. End of treatment. We were stunned at how different their approaches were. We knew they’d be different but we still were not prepared. We asked them about chemotherapy. They said, if we wished, we could do chemotherapy but told us that the AIM regimen would not be recommended due to its toxicity and possible long-term side effects. DFCC uses a milder chemotherapy regimen called GemTax, which is comprised of gemcitabine and docetaxel. They said it was pretty effective and had milder side effects. It sounded too good to be true. We had a lot to think about now.

We saw the doctor at MD Anderson 4 days later. I can honestly tell you that it did not start off well.  My appointment was for 2:00 so we showed up about ten minutes early. We didn’t see the doctor for almost three hours. I remember saying to Caleb, “I’m so annoyed. He better be worth the wait.” Luckily for us, he most certainly was. I’ve never met a more confident yet down-to-earth doctor. He was reassuring, knowledgeable, and, most importantly, optimistic in a very real way. This doctor has been an angiosarcoma oncologist for over 15 years. They are the only type of patients he treats and he sees almost half of all cases in the country. He was open about the treatment, the risks, the side effect, and the ways he uses to mitigate them.  This doctor didn’t speak to me like a case or just a patient – he spoke to me as a person, a mother, and a woman. He said that he won’t treat a mother if she’s away from her children, that a mother away from her children can’t get better. The doctor also asked me to get myself into battle mode and not worry about how I’m going to look while I fight this thing; he had no doubt that I’ll be just as beautiful once we can eradicate this cancer. He put both Caleb and I at ease and we left that appointment full of both knowledge and hope.  To hear an expert say he is going to treat my cancer with curative intent, to hear him say that I’ll be attending his funeral and not the other way around, was so overwhelming. 

I don’t pray a lot. I never felt that it was at all helpful when I was growing up. But I will tell you that, after I received my diagnosis, I started praying again. I prayed for strength but I mostly prayed for time – time with my family, time to find the right doctor, time to fight this. And, I think, for maybe the first time in a very long time, my prayer was answered.