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.
