Scans went by smoothly. MRI first for 30 minutes then followed by CT of chest for 5 minutes or so. Hopefully right decision to do only CT of chest. Since, I talked doctor out of doing two other scans of abdomen and pelvis. Since it is just a small amount more of radiation, as opposed to a new scan on a different different day.

I’ll stop by UMC tomorrow and pickup the scans on CD and results from the radiologist. The radiologist should look over the scans today, that way I can have results from the scans. The scans should be good anyway, the MRI was to look at the scar bed before surgery, and the CT was to look at lungs.  If anything does show up on the scans even though it is highly unlikely it would be this early. It would be a recurrence in the same place the tumor was originally. Or if it spreads through the vascular system to the lungs.

 

OK. Surgery is scheduled for October 9. Arrive at 6:45 A.M.

MRI of femur, and CT of chest on Oct 2. 8:00 A.M. Rinse and repeat every six months.

I will update the post later, with more details about margins that will need to be attained.

About two cm each in direction around the scar tissue bed. In appearance it seems that a lot muscle will be removed but really is not that much. Surgery will be a wide excision and last around two hours.

I arrived at 8:00 A.M. or so for 9:00 appointment. I left UMC Pavilion at 12:00.

I know the doctor has a busy schedule. Also, added additional appointment right after that to see a nurse practitioner. Then they wanted to add an appointment to see anesthesia, but I politely declined. They can just call me, like they did last time. Lastly, I went to have some blood drawn which was only five minutes of my time.  I really did not want to wait for a 1:00 appointment, which could end up being close to 2:00 before I left. I was also hungry, since I skipped breakfast that morning. I think that was one of the longest days that I’ve been there that shouldn’t have happened.

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.