High AFP Tumor Markers.
My best option seems to be exploratory surgery.
Isn’t that crazy?
It was straight up 12 months ago that those funky little markers started rising.
A ‘normal’ human has an AFP tumor marker level between 3-8. In August of 2020, my markers were at 5.7 and rising. So we started watching monthly as it slowly climbed past normal.
The Unilateral Salpingo-Oophorectomy
In November, we pulled out the rest of my lady parts to clean out any tumor remnants that might be hiding out. Back in 2019, I only removed one ovary. Originally, the doctor didn’t want to do a full hysterectomy because it activated menopause. With the numbers rising past ‘normal’ the next step was to remove the rest. In November 2020, I endured a unilateral salpingo oophorectomy; no tumor was identified from that surgery.
Unfortunately, this seemed to activate the sleepy tumorling and sent the AFP tumor markers high to 36 for December.
A substitute doctor told me the news of the surgery’s failure because mine was still on Christmas vacation. The sub described the next step. This treatment includes a horrifically-toxic chemo treatment followed by a stem cell transfusion, all of which will need to be performed in-patient over four months. He also said I needed to start immediately.
Honestly, I lost it.
My family was getting ready to start our new #RVlife, which included five weeks of training at the National RV Training Academy for my husband. After that, we were headed to The Grand Canyon, Niagara Falls, and Colorado. This news changed everything.
We went home and canceled our reservations at the school and RV Park. Then we told my parents. My parents encouraged us to take our Grand Canyon trip before I start the horrible treatment outlined.
To our delight and surprise, my doctor had a different idea for moving forward. He had brought in another oncologist to review my case. In conference with the GYN oncologist, my hematologist suggested we slow down, monitor my blood tests, and look deeper with a CT scan until we can find physical proof that cancer had returned.
High AFP Tumor Markers Surveillance
As we watched the markers rise from January to July, my family moved on with life!
We could not regain our spots in the January class at NRVTA but could get into the early March class. During this waiting period, my stir-craziness sent us on a trip to The Great Smokey Mountains in early February.
The marker numbers keep rising (60), and I submit another CT scan and a brain MRI that both read as negative. Once again, we cannot locate a physical tumor to watch; therefore, we move forward with our surveillance plan.
In April, Husband graduated from the NRVTA as a Certified RV Technician. Tumor markers are up to 154, but my insurance will not approve another CT scan yet. So, off we go to Niagara Falls.
During these travels, Husband decided he wanted to gain some real-world experience with an RV Service Center. Lucky us! We found a great position and spot in Colorado through the winter. This full-time position came with good health insurance and a new group of people to determine if cancer has returned.
Moving to Colorado, temporarily.
Deciding to winter in Colorado was easy. But, executing the actions to make it a reality was another story. Back at home base, the doctors wanted me to submit to another CT scan to play ‘Where’s Waldo’ for a tumor, but my crappy, government-funded health insurance denied it.
The blood test returned with the astronomically high AFP tumor markers number of 1,392 but not until after we had left town headed to our adventure in Colorado. I’ve never had a doctor try so hard to change my mind. My hematologist was alarmed (and vocal about it) that I was moving away and would have a two-month gap in my care.
He convinced me to fly back home and have another CT scan. Unfortunately or fortunately, this scan also returned negative. So I flew back to my fellas, and two months of waiting for the health insurance to start began.
During the waiting period, I had the luxury of researching the doctor I wanted to see. I looked at several oncologists that my home doctor recommended and chose the doctor I felt fit me. Once I selected her, all of my records were sent and reviewed. When I sat down with her for the first time, she was knowledgeable about my case and had a series of options ready to discuss.
Option A. Horrific chemotherapy bookended by stem cell removal and infusion.
Option B. Continued Surveillance
Option C. Exploratory Surgery
Bonus! In conjunction with whichever decision, we can send away tumor tissue for deeper study. This study could reveal a more targeted chemotherapy treatment than the shotgun approach currently prescribed.
I chose exploratory surgery! It will be within the next two weeks. The AFP tumor markers are still high at 2,278.
Please pray for me, send positive vibes (and restaurant gift cards for my men).
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