I had the long awaited (1 Month) initial appointment with the orthopedic oncologist, today.

I also gave her a copy of an MRI of the chest, abdomen, and pelivs and PET from January. I was told some additional info about the MRI that was missed in the previous report. I actually might have a couple of neurofibromas on my spine.  I do hope that’s not true, but it might have been there for years, without me noticing.

Also, I was told the location is in a good location to remove the tumor.  The tumor still high on the list is myxoma which is benign or a neurofibroma. I am not sure if it is a neurofibroma, if this is not currently attached to any nerves.

I just received the call to have the CT guided biopsy setup for June 11 at noon.  Also a conflict will arise if I have to go to a follow up appointment on June 19 because I will be flying out to DC.  If the appointment is about the mass being malignant I know she definitely would want me to miss it.  If surgery is not wanting to be done then, I will definitely reschedule.

I will be attending the Second Annual International Patient Symposium on Pheochromocytoma and Paraganglioma at the NIH. I look forward to hearing more what’s going on in the world on pheo/para and meeting old pheo/para friends and new ones.


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