Hello! My name is Sandra Dillon. I am a paraganglioma patient with Hereditary Metastatic Paraganglioma of the head and neck.
My mets are located in my liver, pancreas, bones and lungs. As of right now my liver, lungs, pelvis and pancreas are functioning fine and a met at my L5 in my spine is now stable post radiation. I do have two primary tumors in my carotid sheath that I just had radiation therapy on last October and November. Thankfully, they also appear to have responded well and are no longer growing.
Here is my story.
My first tumor was removed 36 years ago in 1988. I was 17 yrs old and a senior in high school. The knowledge about this disease was not where it is today. When pathology came back saying my tumor was a paraganglioma, my surgeon told me it was so rare I should never have to worry about ever having another. We now know: having a tumor as a child is a telltale sign that there is most likely a genetic connection.
I had no more issues with tumors for many years. The two decades in between my first tumor and my second were filled with raising children and celebrating milestones. In my 40’s my body began to produce head and neck tumors at a faster rate. The first one was a pharyngeal tumor that my ENT removed via the TORS method using the daVinci robot. I experienced issues with swallowing and had a NG tube for 3 1/2 weeks as my throat healed and I regained my ability to swallow. My right vocal cords were partially paralyzed. Fortunately, after more than a year of healing, my vocal cords fully recovered and are no longer paralyzed.
Two years later I felt a lump in the right side of my neck. My ENT did an ultrasound and found a Carotid Body Tumor. He explained the surgical process and again my ENT removed another Paraganglioma. Prior to surgery, a Neurovascular surgeon embolized the tumor. He then ran contrast across my skull base where he discovered a third tumor at my Jugular Foramen. This explained the hearing loss, roaring sounds and tinnitus I had experienced for several years, which had originally been diagnosed as something else! This tumor was determined to be inoperable, and I was referred to a Radiation Oncologist. Because the tumor was 10 mm in size and sharing space with, but not attached to, cranial nerves 9, 10, and 11, my oncologist determined he could effectively give me one very powerful dose of radiation. That treatment was very successful.
The next thing my oncologist did was to refer me to a geneticist who did my genetic testing. Just as suspected, my results showed that I have the SDHD gene mutation. So far, 2 of my 4 children have been tested and they also have the gene mutation. Fortunately for them, the likelihood of developing a tumor is almost nothing (never say never!), having inherited it from their mother. The concern will be when my sons have children. If they pass down the gene, they will need to begin screening their children as young as teens if not sooner. This is why it is so important to me that my children have all of my Paraganglioma information and medical history.
I began yearly screening with “eyes to thighs” MRI’s with and without contrast. My oncologist followed my yearly screens and in 2017 he shared with me that I had a few lesions on my liver. After proper identification it was determined that they were paraganglioma metastases. At that point, my doctor referred me to an expert in Texas.
In Texas, my doctor had trials for treatments that he was just beginning, but because my tumors did not pick up the MIBG contrast I was ineligible for them. He continued to follow me for a year and a half during which time the tumors in my liver remained stable, but a new tumor at the head of my pancreas began to grow. Also identified were small lesions in my lungs. At my last appointment with that doctor, I told him I may be relocating back to Florida and asked if he had any recommendations for Endocrinologists in the state? He immediately recommended I reach out to Dr. Hans Ghayee at University of Florida, which was perfect for me as I live only an hour away.
After connecting with Dr. Ghayee, he took an extensive look at my medical history and talked with me about my paraganglioma journey. Dr. Ghayee ordered my first DOTATATE PET scan, which showed new primary tumors and areas of metastasis. He put together a team of doctors from the specialties who may be involved in my care. Dr. Ghayee is a very professional and very caring doctor with a wonderful bedside manner. I am extremely grateful that I was referred to him. Dr. Ghayee brought Dr. Barb, a second Endocrinologist, onto my case who has seen me for the past 3 years. I feel blessed with the care my team of specialists at UF Health has provided.
One thing I am passionate about in the treatment of pheo and paras is working through the stress, fear and anxiety that comes along with a diagnosis of this type. Also, I feel it’s important that we help our medical providers understand the emotional effects having a rare disease like pheo para has on patients and their family members, and encourage them to take a whole-person approach to supporting their patients.”
Sandra is the Pheo Para Patient Ambassador to our newest Center of Excellence (Aug 2024), the University of Florida Health!! Sandra’s deep experience with paraganglioma and her kind and compassionate nature make her the ideal choice for this position, and we’re excited to work with her and the UF Health team to bring expert care to our patients living in the Southeastern United States.
Learn more about our Center of Excellence program below.