I wanted to share my story as others may have this particular cancer and they are being treated for other things.
Several years ago, I went home from work one day and noticed my throat had some swelling on either side. I went to a doctor's office and had an exam. It turned out my blood pressure was high (I have a family history of stroke and high blood pressure - so no surprise), my thyroid was low (I have a family history of goiter - again no surprise) and my sugar was high (my mother was diagnosed late in life with type 2 Diabetes so she shared with me). I was sent to an Endochrinologist who did a test and pretty much only wanted to treat my diabetes. I did not like him and never went back.
I found an internal medicine MD who specialized in the care and treatment of diabetes. I was with him for a year before he moved north. I was on several meds during this year, including Insulin and nothing was bringing my blood sugars down. After he moved, I started seeing another MD in the same practice and he is still my doc today.
For 3 years, I was being medicated and treated for hypertension, diabetes and hypo-thryroidism. None of the medications I was taking, and I was on over 11 different meds, were doing anything to get any of the symptoms under control. Then one Christmas day, I woke up vomitting. Now vomitting and I are enemies. I avoid it as much as possible because I vomit rather violently and it hurts. I spent the day sick and vomitting on and off. I thought it was just something I ate and did not think too much more about it.
After gettting home from my Christams vacation, I found I was waking up over the next several days and vomitting again. As this was not usual for me, I called my doctor's office for a fit-in appointment. I got in and told him about the illness and the vomitting. He agreed it was unusual for me so he ordered an ultra-sound, suspecting I may have a gall bladder problem. Gall bladder problems are commen in my area.
The ultra-sound showed something, but no one was sure what. They ordered a cat-scan. The cat scan showed some sort of growth, but no one was sure what yet. To them it looked like it could be lymphoma. I was scheduled for exploratory surgery. During the surgery, the surgeon had never seen anything like what he had found in my stomach. It was wrapped around my distal aorta and he decided whatever it was it had to come out. The thing was removed and sent to pathology. The pathologist had not seen anything like it either and was having trouble determining what to even test for. My anesthesiologist told me it behaved just exactly like a pheo during the surgery, i.e. when they moved it around, my blood pressure went way up, they medicated me then when it was removed, my blood presure dropped through the floor.
This cancer is extremely rare, 1% of all cancers, and my presentation of this cancer is even rarer, 1% of that 1%. Chances are good you do not have it, but I know of someone else who does and for him it is life threatening. He has food alergies that require the use of an e-pen. He found out he had this cancer when he tried to use his e-pen and it did not work because his system was already overcharged with the chemical in the e-pen.
There is a test for this cancer. Ask your doctor or Endo MD if you are seeing one. They can help determine if this may be a problem for you. I wish I could say that all things came back to normal after all this, and they did for awhile. But, apparently I have burned out a few systems and some of my symptoms are returning. The meds, however, are working this time.
Just wanted to share.
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