From the monthly archives: June 2013

I didn’t update last week. But the results are in and it is benign. Neurofibroma.

I will meet with the doctor on July 10, to discuss more about the biopsy results and the next step, which is surgery. So, a benign intramusculsar neurofibroma.

Benign is better than what it could have been. It is a definite relief.  It made my trip last week to DC and the NIH better to not have to worry about the results.  I am not concerned about having surgery, since I am a veteran when it comes to having surgeries. This surgery should be relatively minor compared my other ones. I know there are risks in any surgery, I am sure the risks associated with this are minor.

At least the tumor is a good location within the muscle, and should be easy to remove according to the doctor. Less mucle removed means quicker recovery.




I arrived at the hospital at 10:30 A.M. for the 12:00 appointment, to make sure I was there early enough.  I went down to Adult Radiology thinking that is where I supposed to be, and found out I was in the wrong location. I was directed to CT/MRI at the entrance to check in over there. I then found out I was in the wrong place again.  I was actually supposed to go to Interventional Radiology to have this done. So, it was good that I got there early.

A couple of friends stopped by which I appreciated, before the biopsy, while I was waiting I am glad they came by it was nice to talk to them. I brought along The Pilgrim’s Progess to read while I am waiting, which is a great book by the way.

I look at the time on my phone, and it is after 12.  I asked the  lady at  the front desk, and ask if there is a delay or if it is backed up currently. I then come to find out I wasn’t scheduled to 1:00 for the biopsy.  Ha.  So, getting there early really didn’t help that much.

I finally get to go in. I laid down on a SIemens Open CT machine but didn’t actually have a CT biopsy.  I had an ultrasound guided biopsy instead and CT just incase.  I had a core biopsy, instead of fine needle. I was awake during the whole procedure, which wasn’t bad at all.  I felt no pain during it.  I was asking all sorts of questions during the procedure. The tumor did bleed being vascular.  I was told I would have been in a lot of pain if it was attached to nerves which it was not fortunately. I remember the radiologist asking if five samples was enough to another doctor, and I told him take another one, it couldn’t hurt.

Also, I wasn’t sure what to expect during the biopsy. I thought I might have been sedated and not awake.  I found out I would be awake during it, and turned out better than I thought.I am sure biopsies of other locations might hurt, but I am glad that experienced no pain or discomfort during the procedure.

Now I will be playing waiting game for Cytopathology to do their job and provide a better diagnosis.




I can’t drink or eat anything after midnight, which equally sucks being the appointment is at NOON!!

I am used to the rule to not eat or drink after midnight after having multiple surgeries. It is completely normal to me.

I plan to arrive at least a hour and a half early to make sure I get in on time.  I’ve never actually had a biopsy of a tumor yet, despite already having multiple tumors. Today will be a first. This should be easier to biopsy than location of other tumors.


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.