Steve Kurtz drowned while white water rafting in Idaho on June 29th. From Marie, Steve’s wife:
Steve died in a water rafting accident. He was still in remission at the time of his death. While the months after the end of his treatment were tough ones, he was living life to its fullest. At the time of his death, he had just volunteered to participate in a clinical drug trial for the MG which sometimes accompanies thymic cancers. and was looking forward to getting back to riding his bike His family takes great consolation that he died doing what he loved best–being out in the wilderness.
(Disclaimer: None of us can claim successful treatment of advanced thymoma until we have survived 5-10 years. By that time, treatments and physicians will have changed.)
I’m contributing my story because I recently had a newly diagnosed, “inoperable” thymoma, and most doctors couldn’t propose anything better than palliative treatments. I found a better solution, and perhaps others in this situation can learn from my experience.
I’m a 50 year old, highly respected physicist. Until a year ago, I was an aerobic athlete. A tumor was discovered in my chest xray 22 years ago. An exploratory thoracotomy was performed, and a stage I thymoma was removed. (Unfortunately, I now realize that the entire thymus cannot be removed with that procedure, and CANCER was not discussed after that surgery.) Subsequently, I developed myasthenia gravis (MG) about 12 years ago, and there was no evidence of thymoma at that time. Almost 2 years ago, my MG worsened, and a new thymoma was discovered. The best thoracic surgeon at our local university cancer center attempted a resection but was forced to declare the thymoma “inoperable” after basically a 5 hour exploratory surgery. The stage II/IVa thymoma had invaded the phrenic nerve, pericardium, a lobe of the lung, and was attached to the aorta and another major vessel. No pleural invasion was observed.
I then underwent 3 rounds of cisplatin-based chemotherapy to attempt to shrink the thymoma with no success. Aside from palliative radiation treatments, we had run out of options at our regional cancer center. I visited MD Anderson (U. of Texas) where preoperative high-dose chemotherapy and self-transplantation was proposed as a “4th down option”. Meanwhile, I had searched the scientific literature for weeks, and I found a paper from Mass. General Hospital (MGH) describing some success obtaining thymoma resection after preoperative radiation. I contacted the thoracic surgeon at MGH. He told me that they were continuing to have good success with preoperative chemoradiation, and he encouraged me to come to Boston for treatment or offered to consult with my physicians. With treatment covered by our health insurance, within a month my wife and I moved to Boston for 7 weeks and 2 rounds of chemoradiation (45 Gy dose). Thymoma usually respond to radiation, and mine responded with more than 50% shrinkage. After a month recuperation at home, we returned to MGH for 3 more weeks, and a resection was performed. The MGH docs have been encouraging about the
outcome of the surgery and my prognosis. Per MGH’s direction, I got a final round of chemoradiation from my local physicians (67 Gy cumulative dose, w/ minimum side-effects) 10 weeks after resection. I’m cancer-free 9 months after surgery.
With surgical removal of a phrenic nerve, I recently had diaphragm plication surgery to improve my breathing. I’m still recovering, returning to work (which isn’t physically demanding), and anxious to resume some type of exercise. Since I’ve “done the math”, I offer my experience as an example of the state-of-the-art thymoma treatment in the year 2004. Hopefully, this message will provide ideas for those faced with the same impossible decisions. I realize that I’ve been extremely lucky to have a personal situation which allowed me to obtain that treatment, and I’ll spend the rest of my life with my fingers crossed, grateful to the MGH thoracic team and my local physicians.