By David Pavlak
In 2008, Lori Cuffari’s life changed when she discovered a lump on her throat — a mass that would be diagnosed as thyroid cancer and send her life moving in ways she never imagined.
Cuffari is now working to give back and fight cancer with the Bold Steps to Fight Thyroid Cancer Walk and fundraiser, which will take place on April 28 from noon to 5 p.m. in the Student Recreation Center.
“I just waited for the diagnosis,” Cuffari said. “I’ll never forget. It was a Friday afternoon, and I was sitting on the back porch with my laptop because I work from home. The call came in and they said, ‘Yes, it is hurthle cell cancer. You need to come back in.’”
Cuffari’s positive attitude and belief in prayer kept her from sinking into depression.
“It was scary,” Cuffari said. “I’ve got to say, I don’t know if it is because I am an eternal optimist, but I didn’t have that ‘oh my God, I’m going to die’ feeling. I didn’t know why — I just thought ‘OK, now what do I do? What are my next steps to sustain my life?’ It was a bummer. I assumed that the diagnosis was coming. We knew from the fine-needle biopsy that hurthle cells were present. We also knew that 50% of the time, hurthle cells are benign. We were kind of hoping that would be the case.”
Unfortunately that wasn’t the situation for Cuffari like many others who have faced cancer.
“I was waiting a week for the final diagnosis after my surgery in June 2008 and my doctor told me that if this was definitely diagnosed as cancer, I’d have to come right back in and they would have to take the left side of the thyroid out,” Cuffari said.
A new chapter
Throughout her battle with cancer, Cuffari never intended to start an event to raise awareness for thyroid cancer. However, while out to lunch with adjunct professor Kathy Magrino, a longtime friend of Cuffari, an idea was formed.
“One summer afternoon we were in downtown Freehold, N.J., having lunch, and she said that next semester she had to teach a public relations class and that it was hard to come up with a project,” Cuffari said. “I told her to do something real — for example, a project on raising awareness for thyroid cancer and thyroid cancer research.”
Magrino agreed and Cuffari came to Rider a few months later to judge the students’ presentations. The common theme surrounding the project was the overwhelming belief that the students could take this project and turn it into a reality.
Senior graphic design major Jessica Zimmer was one of those students in Magrino’s class. Zimmer said the impact Cuffari has had on her is larger than the classroom.
“Lori’s story brought a lot of self-awareness to me,” Zimmer said. “I have been told by a doctor since I was 13 that my thyroid was enlarged and needed to be checked. It wasn’t until I heard Lori’s story that I went and got myself looked at. I never would have thought from a public relations course at Rider that I would feel so personally connected to the cause, but just like any form of cancer, it is always important to get checked out.”
The Communication Department volunteered to sponsor the event in order to save on having to pay fees to use university property. Dr. Aaron Moore, an associate professor of communication, was the catalyst behind turning the opportunity into an internship for students.
“It was Dr. Moore’s idea to make it into an internship and that is why we have 17 young women working on this event,” Cuffari said. “These young women are advancing their careers and curriculum by working on my event. That is very cool to me.”
Just like that, Bold Steps to Fight Thyroid Cancer, presented by the Department of Communication and Journalism at Rider and the REACT Thyroid Foundation, was born.
Thyroid cancer is one of the fastest growing forms of cancer. According to the American Cancer Society, 60,220 new cases of thyroid cancer will be diagnosed in 2013. Of those roughly 60,000 new diagnoses, nearly 45,000 of them will be in females. In 2013, 1,850 people will die from thyroid cancer.
“They don’t really know with thyroid cancer though,” Cuffari said. “They are still figuring it out. It is the fastest growing cancer in the country and the fifth most common in women and not a lot of people talk about it. My mission in all of this is to raise money for research to find that be-all-end-all cure, but more so to raise awareness so people can identify it sooner — especially since early detection is key.”
Cuffari believes if she had taken more notice of early symptoms she was experiencing, she may not be in the same place she is today.
“It’s sneaky; you don’t always know it is there,” she said. “But I think if I was more aware of the signs and symptoms early on, I might have been ahead of the game and wouldn’t have metastatic thyroid cancer.”
Unlike other forms of cancer, thyroid cancer does not take the standard chemotherapy and radiation to help eliminate it from the body.
“Thyroid cancer doesn’t typically respond to chemotherapy,” Cuffari said. “Your first order of business after having your thyroid removed is to have a radioactive iodine scan. You prepare yourself by eating a low iodine diet. There is also another drug administered called thyrogen and that helps to facilitate the uptake of the radioactive iodine.”
The process with the iodine pills is one that could unnerve anyone.
“These people come in with a big lead box and masks and hand you these two pills that look like Advil,” Cuffari said. “They come back with a Geiger counter and hold it against your stomach to make sure you’re radiated and then you wait to see if the radiation is taken up by the thyroid cells which are connected to any residual cancer cells. The doctors said that my cancer is typically non-avid, meaning they don’t pick up the radioactive iodine.”
With nothing left to do at the moment other than wait, Cuffari soon discovered that the cancer was beginning to spread.
“The doctors were watching three little spots in my lungs because they said they didn’t know what they were and they couldn’t biopsy them,” Cuffari said. “Sure enough, they grew. I had more scans near Christmas in 2008 and they said I needed more treatment. So I went to Memorial Sloan Kettering, and we had to look for a clinical trial. It is really a crapshoot. They try to identify the type of cancer, how it is growing, how it spreads and how to attack it.”
With the cancer now spreading into her lungs, Cuffari had to decide which course of action she would take to combat the second round of cancer.
Treatment part II
“When I was at Sloan Kettering, the two trials weren’t working,” she said. “The people started listing my options and said, ‘This drug will give you hypertension and this one will give you diabetes.’ Within a week my husband searched clinicaltrials.gov where most cancer patients with no solution go to see if they can find a clinical trial. My husband found Dr. Marcia Brose at Penn Medicine, and I emailed her. Within 15 minutes she called me and said I needed to come see her because she had some solutions.”
With the new drug in her system, Cuffari almost immediately experienced side effects. The drugs that were now coursing through her system made one of her lungs collapse. She was then hospitalized to try to inflate the lung, and Cuffari once again had to summon her never-say-die attitude. If her lung inflated again, the doctor would have to radiate the tumor to get rid of it faster.
“I am a big believer in prayer, and I prayed that my lung would open up on its own and it did,” Cuffari said. “Then I went to radiation, and that was 17 days. I started the drugs again at a lower dose, and after six months, I was back to the full dose.”
Cuffari has been on a dual-drug regimen since January 2010.
“My doctor is amazed,” Cuffari said. “Typically, people get 18 months out of this drug with stabilization and then they have to move on to something different.”
The Bold Steps team partnered with the REACT Thyroid Foundation, and all proceeds and donations will go toward thyroid cancer awareness and research. REACT was formed by another patient whom Cuffari grew friendly with during their visits for treatment.
“A patient of Dr. Brose is from North Carolina and has a different kind of thyroid cancer,” Cuffari said. “She was given a year to live when she was diagnosed in 2009 and it has been four years now. She decided after one of her appointments that she wanted to do something big or go home so she formed the REACT Thyroid Foundation and that is who I am working through.”
Bold Steps set a goal of raising $25,000. As of April 25, that goal has been surpassed and has raised more than $29,000. Many local businesses offered donations and gift baskets to be raffled off during the event, as well.
Cuffari hopes to see this event blossom into something bigger than she originally thought possible.
“I would love for this to turn into an annual event at Rider,” she said. “I would welcome that wholeheartedly. One of the components from the group in Kathy’s class was to lift this model so that it can be taken to any campus across the country. Down the road I’d love to see 30 campuses doing this — sort of how Relay For Life or the Susan G. Komen events work. It seems bigger than I can imagine, but that would be amazing.”
When all is said and done, Cuffari is just playing the hand she has been dealt, and she is OK with that.
“I call this life my new normal,” she said. “I just have to reframe my life.”
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Printed in the 4/26/13 edition.