Category: Updates

I have an appointment to see the doctor in about an hour.

Hopefully I can get all my questions answered, and that I remember to ask everything that I need and want to ask.

I figure today is the day to discuss the next steps in treatment.  I will probably choose to have surgery next month.  I think I will have an MRI as well today, but not too sure on that.

I know God is control of everything, as He always is in my life.

I received a message back from the doctor through the online medium called “myChart”

I guess my mind was a little fuzzy when I talked to her last on August 20.

The secondary option if I chose not to have surgery was to do serial MRI every 3-6 months along with radiation to clean up margins.  Otherwise surgery with wide excision to clean up margins to be done in October.

 

Surgery was successful. It went smoothly. I am recovering. Good news to hear. Neurofibroma removed.

Until today. I don’t like turning something cheerful into something gloomy. I am feeling ok despite the news today.  Still processing everything, I’m sure it will be on my mind as the days, and week goes on.

I went for a post-op follow up to the surgery on August 9. I was originally supposed to see a nurse practitioner but it was changed to the doctor yesterday morning. I thought good, I get to ask her questions and get answers instead of waiting till September 3.

I had a short list of questions ready to ask the doctor.  I forget what was said before, the usual wound is healing well, I am doing ok etc.

It turns out this is not a neurofibroma, despite biopsy saying it was one. The new diagnosis after the specimen was reviewed by pathology is low-grade fibromyxoid sarcoma. The same pathologist actually looked at this tumor.  Well, it brings up a whole new list of questions and answers.

I will have additional surgery, to remove more margins. Because why remove the amount you need to with a sarcoma, when you think it is a neurofibroma. That is understood.

I will have to wait till this scar tissue heals before the next surgery, which should be less of a recovery. I will need to be back on crutches then for a short amount of time, hopefully.

Then MRI every 6 months, for the next 5 years. I hope to continue in the protocol I am already in at the NIH, that will scan my body, and show anything that spreads which will supplement these scans.

OK enough for now. Originally though to be a sarcoma ends up being one. I am glad it was removed and not put off because it was just a “neurofibroma”. Imagine later finding out, it doubles in size and being a higher stage sarcoma. I will press on, as I always do. The only thing keeping me up is trusting n God. He has brought me through every surgery, provided for all my needs, answered prayer even when I didn’t pray. I know I will get through this, it is just another bump in the road.. “I can do all things through him who strengthens me”

I have surgery scheduled for August 9 to get this removed.  Someone might be thinking why do you need to get it removed, I thought it was benign.  The tumor can still grow despite being benign, and with the current size it needs to come out. The larger it grows would cause  problems and more work to remove than if it was smaller.

Am I worried?

I am not worried, if any very slightly. I’ve had surgeries and anesthesia during all those surgeries. I was never concerned about that.  I am only nervous the day before and the day of the surgery. Then I wake up and I am out of surgery.

There will be a 5 -6 inch scar on my leg after the surgery. She will cut through the skin, and muscle and shell out the tumor. It is not near any major nerves or vessels for that matter. So, I know I will be sore, and not want to walk that much. It will be sort of similar to one of my back surgeries, but just affect a leg this time. I won’t have to learn to walk again, but I imagine just general soreness and little pain and discomfort.

Back to spinal tumors (neurofibromas). It was discussed a little, but they are small, maybe not something to worry about for now. It is on my mind though, knowing I have one on my spine. I’ll have to put that in the far recesses of my brain, and not think about it much.

 

 

 

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.