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.

Single slide of enhancement on MRI

Second MRI picture without enhancement contrast. (notice white arrow)

Ultrasound showing vascular properties of mass.

 

This gives barely a better picture, of what I am writing about in my posts.  I decided to at least post a couple screen shots to for anyone reading this blog.

Still no update. I don’t really expect an update til later this week but most likely at the appointment date next Wednesday.

 

The report has the same diagnosis as the previous ultrasound report. The only additional this one added is “may be consistent with an intramuscular myxoma or nerve sheath tumor” which are both benign. The nerve sheath tumor should have been on the ultrasound report in my opinion but sarcoma again can’t be ruled out until a biopsy is done which this report recommends.

The report at least has the location of the mass being in the vastus medialis muscle which is a enhancing well-defined soft tissue mass at  3.3 x 4.7 x 3 cm.

If I don’t hear back this coming week which kicks off with memorial day… I will wait till the appointment on June 5.

Benign tumor is a tumor regardless, which I rather not have either.

I will update more as information flows in.

 

MR went smoothly.  The MR lasted 45 minutes and it seemed a lot shorter,  time flew by pretty fast. I also requested copy on CD. I then had to drive around to parking garage B and then follow signs to Adult Radiology once inside to get my copy.
I don’t think I will get results right away but might have a friend take a look at it, so I don’t have to wait til June 5.