It started as a nagging thought, back in November 2012. I just didn’t feel like my usual self, but I couldn’t define why, precisely. Little things crept into the cracks of my well-being and seemed to erode my vitality. I developed shortness of breath when I was climbing stairs or working out, but my breathlessness was a little more pronounced than usual. I started having episodes of high blood pressure. That seemed odd to me since I was only 52 and an endurance athlete at the time.
I have always been in tune with the deep, inner signals of my body and very aware of “doing the right things” for my health. So I guess I knew something was wrong. But denial can be a powerful force.
The Bleak Outlook of Diagnosis
One of my strongest recollections of that period of time between symptom onset and my diagnosis was an evening out with my girlfriends in mid-April 2013. They were worried about me, worried that I didn’t seem to feel myself. Of course, I had no explanation for them. I remember our conversation that evening vividly. I tried to describe an “overwhelming sense of un-wellness.” I’ll remember those words forever. Just a week later everything came crashing down. My pillar of denial lay in rubble at my feet.
When I got my diagnosis, I felt like I was sitting in my living room and someone pulled the rug out from underneath both the furniture and me, sending everything that anchored me flying into the air. What came down wasn’t me, or my furniture; it wasn’t even my living room. It was my life. My doctor told me that a CT scan had found a mass in my chest.
I heard the words that terrified me: “You have thymic carcinoma.”
"Okay, stop right there," I said to myself. "I know I didn’t just hear that."
Moments of incomprehensible shock and disbelief followed. How ironic that I actually had prayed for lymphoma. That type of cancer is at least usually treatable. But as luck and fate would have it, my doctor told me that thymic cancer is very rare and usually very aggressive.
“Thymic tumors are rare and understudied,” says Giuseppe Giaccone, MD, Ph.D. “Moreover, there is a clear distinction between the different types of thymic tumors and the most aggressive form, thymic carcinoma – which only represents about 10 percent of all thymic tumors (less than a 100 new cases each year in the United States.) Surgery is the mainstay treatment in thymic tumors, but this is often not possible in thymic carcinomas, because they are already in advanced stage when they are diagnosed. Chemotherapy is then the standard treatment, sometimes associated with radiation, but results are underwhelming, with survival rates in the range of five years.”
From Treatment to Clinical Trial
I found it difficult to stay positive about my prognosis since there was little doctors or specialists could offer at the standard cancer centers. What I did learn over the next two years was that if you need a big fish (which I certainly did), you have to go to the big ponds. As a result, I was able to do fairly well physically and mentally, despite many radiation treatments to various metastatic sites.
I participated in a clinical trial that bought me some time. I learned to live in the moment and not to project the future, or what the future might bring. I kept up on the latest advancements in diagnosis and medication and frequently asked about immunotherapy.
In December 2014, my hopes were realized. I heard about a new immunotherapy trial just for Thymic cancer patients at the Georgetown Lombardi Comprehensive Cancer Center. Dr. Giaccone was the primary investigator (author) of the trial. I was accepted into the trial, and my hopes of finding a durable solution to this disease were renewed.
”At the time, Shannon had a lot of disease in her body, but she was still in good condition and very positive spirit,” shares Dr. Giaccone. “She was a good candidate for a study with pembrolizumab, an antibody that targets the immune system by making it fight the cancer.”
"You Have No Detectable Disease"
Elation cannot adequately describe the excitement and joy I felt after just one treatment. My metastatic sites started to shrink. And in April 2016, I once again heard what I previously thought was impossible: “You have no detectable disease.”
These five words were equally shocking to my original diagnosis but in the most incredible and delightful way. Today, I am filled with gratitude and thanks not just for the blessing of physical healing but also for the restoration of hope.
For those with rare cancers my advice, like so many who fight this disease, is never to stop looking for the "next big thing." I took courage from my hours of research and from participating in clinical trials. Even though my first treatments were ultimately not the treatments, they were the bridge to the treatment that ended my cancer story. So never, ever give up. Persistence pays off.
Shannon's full story can be viewed here:
