My name is Sandra Dillon and I’m 53 years old. I have 4 grown children and 3 wonderful grandchildren. I live in Florida, USA. I am an amateur photographer and enjoy spending time in nature and with my miniature schnauzer.
How were you diagnosed and how long did it take?
In 1988, I was 17 years old and a senior in high school when I discovered a tender lump in my neck. My primary care doctor immediately diagnosed the lump as a tumor and I was sent to a surgeon who successfully removed the tumor. When the pathology report came back, it was determined to be a paraganglioma. My surgeon stated I would never experience another tumor like that as it is extremely rare.
Fast forward 23 years to the end of June in the summer of 2011. I began experiencing asthma-like symptoms that did not respond to any of the asthma medication nor steroids. I spent 8 weeks unable to breathe and being put on different medications in an attempt to resolve my symptoms. My PCP referred me to a pulmonologist, I saw an allergist – all with no answers. Then my PCP sent me to an ENT. When the ENT and I discussed my medical history and I told him about the para I had in my teens, he set me up for a CT scan right away. Sure enough, a pharyngeal tumor was discovered. To surgically remove it in the traditional manner would have required removing a portion of my hyoid bone and the potential for a trach. I was referred to a surgeon well known for utilizing the TORS method to remove throat cancers robotically. So, in October 2011, the tumor was removed. Surgery was successful but the recovery was long and painful. I had an NG tube for 4 weeks; my right vocal cords were paralyzed right after surgery and it took a year or so for them to heal. The worst part was the excruciating pain I experienced after surgery, the gravity feeds that I had to have through my NG tube, and not being able to sleep lying down. It was a long recovery, and even after all of these years, I still sometimes experience a choking sensation when food or drink hits a specific spot in my throat.
In 2013, I was diagnosed with a carotid body tumor. That surgery was successful although I do have faint numbness along my right jaw line. At the time of surgery, a para was discovered in my jugular foramen. I was referred to a radiation oncologist. In 2014, I received one very high dose of IMRT radiation on the 10 mm tumor in my jugular foramen. It was extremely successful. From then on, my radiation oncologist oversaw my yearly scans. In 2017 it was determined that I had tumor metastasis in my liver. Over the next 15 months I was seen by a pheo/para specialist in Houston, TX, USA. It was discovered that I had mets in my pancreas, lungs, and bones as well.
I now live in Florida. A PET scan in 2020 showed two new primary tumors in my left carotid sheath and mets on my spine. In 2021 I had a week of radiation on a tumor on the L5 vertebrae of my spine. In 2023, I had 5 weeks of radiation on the two tumors in my carotid sheath.
What treatment have you had and how did it affect you then and now?
I was fortunate to experience very little long-term damage from the three surgeries. Especially the tumor removed from the pharyngeal space. I have also had radiation on three separate occasions and locations. By far the most successful of the three was the IMRT radiation treatment on my skull-based tumor. The radiation on my L5 vertebrae and the tumors in my carotid sheath caused typical side effects which varied depending on the location. Pain, nausea, and fatigue were the most common side effects of the radiation on my spine. Sore throat, flu-like symptoms, muscle aches, mild swallowing issues, some loss of neck and shoulder range of motion, and strangely enough I wasn’t able to open my mouth as wide as prior to radiation. I regained all function through physical therapy and time as my body healed.
What impact has the diagnosis had on your personal life ?
This disease has created so much anxiety. At times I don’t even recognize nor feel like myself anymore. This journey has been an emotional roller coaster. I thought learning that my tumors had metastasized meant I had stage 4 cancer as is typical for, well… typical cancer. However, this cancer is anything but typical. Then I was told my tumors were dormant and would likely not cause me any problems. Then, the tumors were showing signs of growth. Now, I have had so much radiation that there is the long-term potential that I may develop a secondary cancer from radiation exposure. These are only a few of the stressors that I’ve experienced along the way.
What lessons have you learnt along the way (if any)?
I have learned that it is absolutely ok to disagree with a test result and request further clarification or a second evaluation. I have learned that you often will walk this journey alone because not everyone, or as in my case, no one will have the wherewithal or desire to do the research and/or advocate on your behalf. This disease can be an isolating experience when you find no other patient that has walked your specific path before. I have learned it is necessary to get involved and represent so other patients can discover they are not alone and do not have to walk this journey by themselves.
Who’s been your hero? Perhaps it was you!
I must admit that I have been fortunate. My surgeon in Indianapolis, Indiana, who removed my tumors in 2011 and 2013 as well as the radiation oncologist in the same location are both excellent. My endocrinologist in Houston is as well. However, my hero is Dr. Hans Ghayee of UF Health. He ordered my first Dotate PET which revealed all areas of concern. He put together a team of doctors who would treat the different areas of concern. He is very thorough in covering all of the bases. Not only that, he is compassionate and caring. He looks at his patients from a whole person perspective. He is just as concerned about their emotional and mental wellbeing as their physical and he recognizes the importance of giving his patients a voice. He’s provided me with encouragement and he has advocated for me when necessary. He recognized that my professional and personal skill set, knowledge and experience could be beneficial to other patients and invited me to join UF Health’s Center of Excellence team as their Patient Ambassador. I am extremely thankful to have Dr. Ghayee as one of my doctors! He truly is a hero to me as well as others.
Did you get any help from a patient organization during your journey?
In 2023, I became more involved with the Pheo Para Alliance. The support groups I attended and the conference at UF Health last year provided much needed encouragement and learning opportunities. I am now a trained as a peer-to-peer and group facilitator and I am the Patient Ambassador for UF Health’s Center of Excellence. The Pheo Para Alliance, along with Dr. Ghayee, has given me a wonderful outlet to help others.
How are you now?
As far as this disease goes, I am currently doing well. Radiation was successful and the tumors in my carotid sheath appear to be stable, as do all the para mets. I was grateful to be able to take a deep sigh of relief after my last PET scan.
