“Now, I’m trying to just take it day by day, praying for better treatment and a possible cure but living my life and praying it never returns again…”
My name is Jill. I’m not sure when I my symptoms first started but I know that I have had high blood pressure and a feeling of flushing for a very long time. I also had an experience in 2014 when flying on take-off and landing — I felt a severe pain in my abdomen. I went to my doctor many times with complaints about my blood pressure and heart palpitations, but was never taken seriously until I insisted on seeing a heart doctor at one appointment
That was in 2016
When I finally got into the heart specialist and all seemed normal, I insisted on a CT of my heart, and they did it – I’m sure expecting nothing. It showed an 8-10cm pheochromocytoma tumor on my left adrenal gland and it was pushing on my aorta. I knew something was wrong!!! After getting me prepared for surgery, they removed my adrenal gland along with the tumor and told me to go on my way. I was “cured” so no one followed me after that.
In 2019 I started to get symptoms again, and I knew what they meant but was hoping I was wrong, because I was “cured” of course… I went to my doctor, and right away she CT scanned me. I had pheochromocytoma in my lymph nodes behind the original tumor area! I was considered to have metastatic pheochromocytoma.
I decided I was going to Dana Farber / Brigham and Women’s hospital instead of back to the doctor who claimed I was cured… I really wanted to go where they had better knowledge of my rare condition. I had those enlarged lymph nodes removed in December of 2020, and I am now followed by a fantastic team in Boston with scans, bloodwork and in office visits. I have to travel and stay overnight, but for me the quality of care is worth it. Now, I’m trying to just take it day by day, praying for better treatment and a possible cure but living my life and praying it never returns again…
My advice would be: listen to your body and don’t let doctors push you off as if it’s nothing or you just have anxiety. Insist on getting the testing, be your voice. It’s a simple blood test or 24-hour urine test… Because this is so rare, it’s overlooked for too long and then causes more health issues. The key is catching it early, before it’s big and spreads. Early intervention can save you from more serious problems.
That’s my story so far, and I hope it continues on for years to come!!”