We got the call while out of town for a short beach trip. Courtney had been diagnosed with Leiomyosarcoma. What started four weeks earlier as a trip to the dermatologist took a sudden turn in a different direction.
A small pea sized bump on her left temple along the hairline grew over 4-5 months and we finally decided to have it checked out.
Courtney self diagnosed herself using pictures, and Google. Without a doubt she knew she had Basal Cell Carcinoma. This was of course confirmed by the doctor at the dermatology and skin cancer center here in town. A small biopsy was done, and we awaited results.
At her second visit we learned that the biopsy sample was not large enough, and pathologists were unsure what it was. In fact, it looked more like Spindle Cell Carcinoma (still a skin cancer). So the entire lump was removed and the skin around her temple sown up with 16 stitches. Again, we waited for the results.
We left town for Orange Beach, our annual trip with two other families, and got the call just before lunch on Day 1. Good news! They got it all! Her margins were clear.
Then came a second call from the doctor’s office informing us they’d missed something in her results. This call was a stark contrast to the first just 10 minutes earlier. The spot on her temple wasn’t a spot anymore, it was a tumor. It wasn’t a benign tumor, but a malignant one.
Leiomyosarcoma (LMS) was the diagnosis, and we needed to see an oncologist as soon as we were back in town.
The conversation ended with the nurse encouraging us NOT to Google it, but as you can probably guess, Courtney had already accomplished that before the phone call even ended.
We went about the rest of our trip informing friends and family who knew about the initial scare of possible skin cancer. The beach, the pool, seafood, friends and charcuterie were all a welcome distraction from what awaited us back home.
The day before we left Alabama to go home we spent the day with Courtney’s family, and the morning at her home church. There they gathered a group to pray with us. For healing. For peace. For wisdom.
Her first oncology appointment was scheduled with a surgical oncologist in Chattanooga on Tuesday. The visit was mainly a consultation and our first real chance to ask questions of a medical professional in this field. He put us at ease by answering every question we could think of.
He then did a full body exam to ensure no other superficial tumors or spots could be seen. None were found.
He ordered a PET Scan, blood work, and a chest X-ray.
We learned in that first meeting how rare this particular cancer is. Of all diagnosed cancers each year, Sarcomas make up less than 1%. There are 30 different types of Sarcomas, and of those diagnosed each year LMS represents only 5-10% of those. Of that 5-10%, the majority of cases are found in men over the age of 40, and found in their lower extremities. Courtney is a 33-year-old female, who has it on her head. The doctor was unable to quantify the rarity of her case. If you know Courtney, you are not at all surprised that SHE was diagnosed with a cancer this rare. 🙂
The chest X-ray was completed, and showed no abnormalities. Praise the Lord!
The PET scan was scheduled for the Friday after her first oncology appointment, only three days into this process. The day before the PET Scan was to be done we got a call stating that insurance had denied the scan. Many times these scans are denied by insurance complanies because they are “not medically necessary”. In this case, they simply did not have enough information to merit any kind of approval. The test had been scheduled so quickly that results of the blood work and X-ray had not made it through the proper channels.
I spent the better part of that day on the phone with the imaging office, my insurance rep, and the oncologist’s office. We spoke so often that day that they actually memorized Courtney’s birth date, and stopped asking me for it every time I called.
Rather than draw out the process of getting approval for a PET Scan the doctor ordered a CT Scan instead, and the imaging office worked us in at the last-minute for the next day.
During the first oncology visit our surgical oncologist also referred us to a radiological oncologist to discuss potential treatment options. That appointment was Friday morning. The oncologist at this appointment was honest in admitting he had never treated a patient with Leiomyosarcoma. He was still able to go through a number of treatment scenarios based on “what if” results from the CT Scan. We left his office with many more questions answered about what the immediate and long-term future might look like.
That afternoon we completed the CT Scan and ended a very long, very tiring week.
One silver lining ironically, has been the rarity of the cancer. Because it’s so rare there has been quite a bit of interest in her case. On Tuesday of this week a Tumor Board will meet in Chattanooga to discuss her case. This “board” will consist of multiple pathologists (including the original one who read her case), surgical oncologists, radiological oncologists, and medical oncologists. Some 15 or so medical professionals, all studying her case.
The first question they will seek to answer is whether or not the cancer has spread to anywhere else in her body. If not, then the question will shift to how to treat her moving forward and prevent any spread.
Doctors are not clear on how aggressive her cancer is, or if it has spread. These are the questions weighing heaviest on our mind right now.
Another difficult aspect of this is the fact that no one in our area is very well versed in this type of cancer. Because it is so rare there really isn’t an “expert”. Pending the outcome of the Tumor Board on Tuesday we are praying about exploring a second opinion. We’ve begun to research various sarcoma centers around the country like MD Anderson or Mayo Clinic. These institutions are equipped to diagnose and treat Sarcomas in a way that our local physicians can’t. Depending on the results of her CT scans, other testing, and decision from the Tumor Board, we may decide to reach out and explore other options.
We have been very happy with our doctors so far. The attention they’ve given us has been amazing. It has done a lot to calm many of the fears we had early on.
It’s only been 10 days (at the time of this posting) since we learned of the diagnosis. A lot of poking, and prodding, scans and testing have been done in that time. We are thankful that so much has been done in such a short amount of time.
We’re also thankful for the hundreds of people praying. We have been overwhelmed by the comments on social media, texts, calls and emails from family and friends. In some cases we’ve heard from total strangers!
Our prayer and faith remains the same:
- We’re believing she is healed.
- We’re asking for wisdom (for us and the doctors).
- We’re praying for peace.
We know God is in control, and we know he is already working on Courtney’s behalf. We have seen the fruit of His working even this week.
Many of you have asked how the kids are doing. They understand that Mommy has cancer, but aren’t entirely sure what it all means. Kids are smart. They pick up on things, even if you don’t explain it all to them. They know something is up.
Please continue to pray for us. Pray WITH us. Pray for healing. Pray for wisdom. Pray for peace.
If you’ve read this far, thank you! We appreciate all the love and support we’ve received so far.
Stay tuned…we believe and look forward to sharing good results with you soon.