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Tuesday, August 13, 2013

The Last Thing…A Story of Thyroid Cancer, Survivorship and LIVESTRONG

Born to Greek immigrant parents on the bicentennial, Dimitrios Donavos, 37, of Silver Spring, MD was diagnosed with Papillary Carcinoma in May of 2006. A cycling enthusiast, an activity he took up at a young age as a counterweight to his mother's culturally driven need to overfeed him, he is grateful to be cancer free today and participating in his 6th LIVESTRONG Philly Challenge on August 18th.

“Oh, and one more thing…” quipped Dr. Joseph Bavaria, the Penn cardiothoracic surgeon who had just gone over my CT and echocardiogram results one year after my aortic root replacement surgery, “there’s this thyroid nodule that showed up on the edge of your abdominal CT scan. It’s probably nothing, but we’re going to refer you to Dr. Susan Mandel for evaluation just to cover our bases.”

Thyroid nodule? It was the last thing I wanted to hear after being given a positive report on the status of my aortic root repair, the largest and most complicated surgery of my life. It had been a very long road leading to that fateful day in the exam room on the 4th floor of Silverstein building and this was a twist that I wasn’t expecting.

I had first arrived at HUP a year earlier for a consultation with Dr. Bavaria, or “Dr. B”, as he is known to his patients. At the age of 15 I had been diagnosed with Marfan syndrome, a rare genetic disorder of the connective tissue. The diagnosis helped explain why I was 6’5”, with long limbs and slender fingers, while no one else in my immediate family broke the 5’6” barrier. Among the host of symptoms that accompany the disease, none is more serious than the cardiovascular complications affecting the aorta. Marfan syndrome has made my connective tissue weaker, and my aorta had stretched over time to nearly 6 centimeters (twice the average size of 3 cm). As my aorta stretched, it became even weaker, running the risk of a potentially fatal dissection or rupture.

Dr. B was evaluating me for a relatively new procedure for Marfan patients, a David 5 valve-sparing aortic root replacement. Even though the procedure had been performed in the “normal” population for some time, Marfan patients typically received a more traditional surgical approach that involved a mechanical valve. Dr. B was refreshingly upfront when he told me I would only be his 25th patient to undergo the valve-sparing procedure.

The surgery required my body to be cooled and induced into a hypothermic state in order to shut down both my brain and my heart while surgeons worked on the arteries. No EKG (heart signal) or ECG (brain signal) meant that for that portion of the surgery I met the standard for the clinical definition of death.

Dimitrios Donavos, (back row, third from the left)
The surgery was a success. Shortly after my initial discharge, however, complications forced me back to Penn hospital by helicopter for an emergency life-saving procedure. Additional hospital stays for life threatening arrhythmias, reconstructive plastic surgery to repair a stubborn chest incision that was refusing to close, and months of rehabilitation therapy all led up to my one-year follow-up visit with Dr. B. After everything I had been through, I finally felt like I had turned a corner and was looking forward to a period of relative calm on the health front.

Then came the cancer.

Sitting in Dr. Mandel’s office awaiting the results of a thin needle biopsy was one of the longest waits I had ever had to endure. It was probably less than 20 minutes, all told, but the anticipation of confirming (or rejecting) a cancer diagnosis had the effect of making time stand still. The tension in the room as we waited for the results was palpable. When Dr. Mandel mercifully burst in and broke the silence, the news was what I had feared: I had thyroid cancer.

If ever there is an upside to a cancer diagnosis, it was that it was the “right” kind of thyroid cancer: Papillary Carcinoma. Of the types of thyroid cancer, it has the highest survivability rate. At that point surgery was no longer optional and I likely faced radiation therapy afterwards, depending on how large the nodule was and whether the cancer had spread to surrounding lymph node tissue. In a procedure performed by Dr. Ara Chalian, I had a radical thyroidectomy (total removal of the thyroid). Because the cancer had spread, and the nodule was over 1 cm, I underwent radiation therapy at the recommendation of Dr. Mandel. Ironically, the therapy entailed swallowing capsules containing radioactive iodine … the toxic substance released in a nuclear meltdown. Because the thyroid is really good at absorbing iodine, it’s an approach targeted at eradicating any remaining thyroid tissue in the body without damaging other tissue.

After radiation therapy I underwent a period of seclusion during which I was quarantined from human contact and anything I touched became radioactive (a trait my young nephew at the time found exceptionally cool). The treatment was successful: my follow-up full body scans were clean, indicating no more evidence of thyroid cancer in my body.

The Silver Lining

In an unlikely symbiosis, my Marfan syndrome and subsequent aortic root replacement had led to a scenario that helped diagnose my thyroid cancer, potentially saving my life. Not a day goes by that I am not thankful for the incredible care that I received and continue to receive at HUP. To say that I wouldn’t be here today without their efforts would be an understatement and it gives me great pride and appreciation to have been able to join the Penn Medicine LIVESTRONG Philly Cycling team in 2012 and to be riding with them again in 2013 in support of the LIVESTRONG Foundation and their efforts.

Learn more about the LIVESTRONG Philadelphia Challenge, and why the Abramson Cancer Center is a LIVESTRONG Center of Excellence

Read more about thyroid cancer

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