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.

Well, today I have an MRI at 12:30.  I think I’ve had around 15-16 MRI’s total in my life so far.  The majority of them were on my brain.  I probably need to get another one, last one was in 2008.

Ok, back to the original point. I have a MRI today on my right thigh, around femur area to look at soft tissue mass. I don’t mind having an MRI done, they don’t bother me. The results of the MRI on the other-hand is what I am concerned about.

I know there is a mass there already, and needs to come out. I doubt the doctor would want to leave it there at this size if it is benign.  The mass if benign could be a neurofibroma or a nerve sheath tumor/schwannoma.  The mass being vascular means a blood supply and once mass goes from the non-vascular stage to vascular stage, it can grow indefinitely.

This MRI will show better detail then the ultrasound, which should give a better diagnosis.

Am I prepared for the results? Yes and No.

No, being that I don’t want to go through this right now.  I know surgery will have to be involved, and then there is the recovery period.  This will be added to my previous list of surgeries, that I’ve already had done.  The surgery could be fairly simple or little more complex with removing surrounding tissue, and if nerves are involved.

On Monday I was called from UMMC that I have a MRi scheduled on May 20.  That is good news, at least I will have an MRI done before the June 5 appointment. I was hoping to see the doctor sooner but this evens it out.  She will have a chance to look at the scans and get a better picture of the mass.  Then there will be a game plan laid out hopefully on what to do next. Especially if doesn’t look so friendly.

A biopsy is probably in the picture.  I didn’t want to jump the gun and get a biopsy right away from doctor’s recommendation at the clinic after the ultrasound results.  I am not a doctor but know enough(to be dangerous. ha) but didn’t want to rush into a biopsy.  The mass could be related to a pheochromocytoma(really rare if paraganglioma) and didn’t want to put at risk if it was something not supposed to be biopsied.  I know with my health I need a specialist to look at this instead of paying $1300 for evaluation and biopsy, Then most likely referred somewhere else after that, it is better to have it all done at one place.

I talked to friends, and was told I should get an appointment with the orthopedic oncologist to look at the soft tissue mass, since they are more experienced and the person I should be seeing to deal with this.

I will post more updates at they come.

Also, praise the Lord I was able to call and get the appointment with the Orthopedic Oncologist.  I called the office and requested an appointment and told them the diagnosis.  I thought they would say oh you need insurance before you can get an appointment.  They asked after they put me down for June 5.  I was told I might be able to get an earlier appointment but was put down for this date to be in the system.

On May 6, I thought I should drop of a CD for the doctor to review, instead of waiting till June 5 for her to look at the images.

I meant to start this blog a couple weeks ago, but here it goes.

I first noticed this bump on my thigh, near femur area in January. I forgot to notify a doctor when I was at the NIH in January, it slipped my mind.  The next time I had the chance to tell a doctor was in March but I canceled the appointment with the endocrinologist because I didn’t see a reason to go because I just had complete blood work done and scans of my chest, abdomen and pelvis.  I was good no signs of anything and blood work and other tests were within normal ranges. Also, the previous week I had just had oral surgery done to remove a molar and wisdom teeth, and had the follow up a day before that scheduled appointment.  I didn’t see a reason to leave from work again to go to it because already had schedule to do other things that day.

I finally decided to get the bump checked out, and I had lost my voice most likely due to allergies, so I sounded horrible that day.  I called to see about getting into UMC to get it checked out but after about an hour trying to talk in my hoarse voice it was no go.  I was told go to MEA then get referred over here.  So, I went back to work then back out within the hour to MEA to get it checked out.

They looked over it, I had an XRAY done and it is not bony.  I needed further testing. I was called back after I left for an ultrasound appointment the next day (4/23/2013) at Southern Diagnostics.

I was surprised the ultrasound only lasted 2 minutes for $300, which is quite expensive for the time.  The price most likely included the radiologist to evaluate the images.  I remembered to get a copy on CD from being familiar with testing. I also wanted to review the images.

Well, the images of the mass didn’t look like a cyst, which would be totally black, fluid filled.

The results from the radiologist being 4.5 x 2.7 x 3.1 cm  vascular, solid mass within the thigh musculature and differential diagnosis being soft tissue sarcoma.