We received a call today from one of our doctors at the MDA Sarcoma Center. It was a scheduled phone consultation to go over the results of Friday’s ultrasound, and to discuss the pathologists review of Courtney’s diagnosis.
He lead with the news that the ultrasound came back normal. The ovaries and uterus looked good. He didn’t suspect they would find anything, but based on the activity from the PET Scan, he wanted to rule everything out.
The pathologists report was a little more tricky. From the very beginning of this journey it seems we’ve been waiting on clear pathology results. It took a long time to get initial results from the first two biopsies here in Tennessee, and it even took MDA Pathologists awhile to determine what they were looking at.
The initial diagnosis was Leiomyosarcoma. However our first meeting with a doctor at MDA cast some doubt on that verdict. They conclusively ruled out a rare type of Melanoma, one of the other possibilities it could have been. Which left us with either the original diagnosis, or another type of sarcoma. It turned out to be a different type.
Stage 1 Myofibrosarcoma, was the final diagnosis. Also very rare, and even more rare to have started on the head. At least we now know what it is.
Learning whether or not it had spread was a key question we’d hoped to learn the answer to while at MDA. Now that we know it hasn’t, the conversation turns to treatment and prevention.
Chemotherapy was already ruled out while we were there. Radiation is a last resort for this type of cancer, and not immediately necessary at this stage. Surgery is the recommended course of action by the doctors at the Sarcoma center who’ve treated this before.
An oncological surgeon will call us in the next few days to schedule surgery at MDA, roughly 3-4 weeks from now. They’ll go back to the original site of the tumor and remove a larger portion of skin and tissue around that area. The 2nd biopsy that removed the tumor didn’t provide sufficient margins to be completely clear of any further risk. This surgery will achieve the better margins that are necessary. During the surgery they are likely to take enough skin and tissue that they will need to use a skin graft as part of the healing process.
After surgery, the pathologists will review whatever tissue is removed. Based on their findings we’ll learn if radiation will be needed moving forward. In either case, we’ll more than likely be making 3-4 trips a year to MDA for follow-up visits and exams, for at least the next two years.
While we hope and pray it does not spread or come back, the doctor said there is a chance it could. If it did reappear it would likely pop up in the same spot, or spread to the lungs. As a result, they will do regular CT Scans and chest X-rays to try and catch anything early. It was caught early this time, and we’re thankful for that.
So for now, we finally have some answers, and we have a better idea of what the future holds. We still need your prayers! God can still do a miracle, and we are praying for just that. We have seen him work on our behalf this far, and are believing for even greater things to come!
Please continue to pray for wisdom, peace and healing. Also pray, as regular trips to MDA become our new normal.
While we finally have answers, in many ways we’re still at the beginning of this journey. We are hoping and praying for good outcomes at each step along the way.
It’s been a long two months! In the midst of all this the kids have started school, and fall break is coming up next week. Months ago we planned and paid for a trip to Disney World in Orlando. Hotel, dining, park tickets, all of it, planned and paid for way before any of this became a reality.
We’ve really struggled over the last few weeks with whether or not to take the trip. For one, we weren’t sure if we’d even be able to go. If Courtney had started some sort of treatment, or needed further testing, we weren’t sure we would even be able to make the schedule work. I didn’t get trip insurance, and so we would have lost money if we simply cancelled the trip. On the other hand we weren’t really comfortable with the optics of shuffling off to Orlando to live it up at Disney while so many people have offered us much needed love, support, and help, during this challenging time.
In light of everything we’re planning to continue with the trip. We honestly need the time away! The kids have been looking forward to it. We have been looking forward to it. We couldn’t imagine doing anything better for our family right now than to continue with the trip. So, we leave early Friday morning to visit the happiest place on earth!
We truly appreciate your prayers and need them as we continue this journey. We will continue to update you as we learn more, and take steps forward.
We continue to ask for wisdom, peace, and healing in Jesus’ name!
Thank you all! We love you.
Adam & Courtney