A Second Opinion Thwarts Spreading Thyroid Tumor
Roberta’s Story: Thyroid Cancer
One of the most empowering things is being an active member of the team and having a say in your care.
Roberta’s never let her cancer slow her down. The Philadelphia native is about to complete a master of fine arts degree, has written a novel and is a prominent member of the Thyroid Cancer Survivors Association (ThyCa) — all in addition to her busy and rewarding career in academic marketing and communications. Her momentous energy is contagious to all those around her.
For years, Roberta’s nurse practitioner noted her enlarged thyroid. Year after year, she told her primary care physician, who would order a thyroid panel that always came back within a healthy range. After nine years, Roberta’s nurse practitioner ordered an ultrasound of her thyroid that revealed growths that didn’t belong.
The Call That Changed Everything
On July 5, 2013, Roberta received a call from her doctor. “You have thyroid cancer,” he solemnly told her. Faced with this devastating new reality, Roberta revealed her diagnosis to her family, as well as her coworkers, who rallied around her. “Keeping a positive attitude is half the battle. You need a good support system, which made it a lot easier,” Roberta said.
“This is an easy cancer to treat.” That’s what many people, including her doctors, told Roberta. Feeling that she had no reason to question them, she underwent surgery to remove her thyroid, followed by radioactive iodine treatment to destroy any remaining thyroid tissue. However, a post-treatment scan revealed a 2 centimeter growth where her thyroid once was. “Even I could see it on the screen!” Roberta recalls. “But the surgeon and radiation oncologist told me to let the iodine do its job. I figured they knew what they were doing.” However, she knew something wasn’t right. After repeated urging from her parents, she contacted Johns Hopkins.
An Individualized Care Team
At Johns Hopkins, thyroid surgeon Ralph P. Tufano, M.D., M.B.A, FACS, and endocrinologist Douglas Ball, M.D., came to her aid. “Dr. Ball immediately made me feel at ease,” said Roberta. “He listened to me, answered my questions, then called Dr. Tufano to schedule an appointment.” They ordered CT and PET scans, ultrasounds and biopsies of her lymph nodes. The results showed that Roberta still had papillary carcinoma, the most common type of thyroid cancer. It had also spread beyond the thyroid gland into the lymph nodes — this was the 2 centimeter growth Roberta had seen. Radioactive iodine treatments wouldn’t destroy this cancer; a second operation would be necessary.
At home, Roberta worried about her upcoming surgery. She’d already had one surgery that should have removed her cancer and yet here she was facing another. As a mother to her son Jasper, 11, she needed to be sure she was making the right decision. Unable to sleep, she emailed Dr. Tufano.
A few days later she returned to meet with her doctors. To her surprise she was greeted by Dr. Tufano, Mike Lopez, C.R.N.P., and her email — all three single-spaced pages! “We’re going through these one by one,” she recalls Lopez telling her. “I honestly expected to be shooed out the door. Instead they sat with me answering all my questions and discussing risks like vocal fold paralysis,” Roberta said. She left feeling very confident that she was in the absolute best hands.
During surgery, Dr. Tufano removed 13 lymph nodes where the thyroid used to be, nine of which were cancerous. She did not experience any complications. One month later, Roberta’s thyroglobulin was undetectable and her thyroid-stimulating hormone (TSH) was at a therapeutic level. “The second I saw the results, I called Dr. Tufano’s office. He called me less than an hour later and I told him that my thyroglobulin was 0.1 and that I was a little bit in love with him because he got it all,” Roberta recalls. Dr. Tufano was delighted to get the call. “I was so happy to hear Roberta’s good news and I was glad she shared it with me directly,” he recalls. “I know how appreciative she is of our care and relationship.”
Five months later, another round of tests were done. Roberta’s thyroglobulin was now less than 0.1, her TSH was still excellent and there was nothing visible on ultrasound. Dr. Ball said he would be comfortable with using the word remission if the same tests showed the same results six months later.
A New Anniversary
One year to the day of her surgery, Roberta celebrated remission. The tests all came back great and in her usual spunky way she told Dr. Tufano, “Here I am. Cancer-free. And it’s all your fault!”
Dr. Ball and Roberta continue to work together to balance her thyroid medication. “Trying to regulate TSH, T3 and T4 can be a challenge,” she said. “There’s fatigue, sensitivity to temperature. My hair is falling out and my skin and nails are a mess,” she added. The worst part is what thyroid patients call brain fog. “It’s really embarrassing. If someone interrupts me while I’m speaking, I cannot remember what I was saying.”
Today, Roberta works to empower people with thyroid cancer to be their own advocate. She advises patients that it’s important to seek multiple opinions before beginning treatment, to research your condition and to prepare for appointments by writing down questions you have and invariably forget once you are seated across from the doctor. She shared that it is crucial to stay organized and bring someone with you to your appointments who can make sure all your questions get answered. “Having doctors that you trust makes a huge difference,” she said. “One of the most empowering things is being an active member of the team and having a say in your care.”
“Connecting with my patients and personalizing therapy is what I hope to achieve each time I meet a new patient and their family,” Dr. Tufano added.
“Thanks to Dr. Tufano, I have a voice and I’m using it to encourage people to find and use theirs when facing a health crisis,” Roberta declared.