Ameloblastoma 02 (Drafted on 04/04/2019): Search for Cure

First, thank you all for your support.

So what have we been up to over the past 6 or 7 weeks? We have been seeing specialists, both in the St. Louis area and the region, in the search for the best treatment.

What Experts to See?

Since Ameloblastoma is a rare disease, finding doctors experienced in the treatment takes some work. My employer has contract with Consumer Medical, which I engaged early. A nurse was assigned to our case (they call the "ally"), who actually would research on the disease, consult with their doctors, and come up with a list of providers. They provided some research articles electronically, and sent us physical copies of the articles, which are much more friendly to my eyes. The doctor list is a good starting point. Our regular dentist has been very eager to help. Of course, there is always google.

Then I thought, the insurance company must know, and answer the question like "what are the top 5 institutions treating this disease?" It turned out the insurance company can't answer the apparently simple question.

As I started calling the doctors, some of them just don't treat the disease. But I learned to ask the question "who would you recommend?" As the list got groomed, we began to make appointments.

Expert Opinions

The vast majority of the doctors we saw have been very good. Every time we walk out the office, we felt we learned more about the disease and treatments. No matter how much I read or google, that is not the same as talking to a medical professional. We felt very lucky and are very grateful for getting help from these experts. One of the confusion is what kind of specialist to see, there are the OMFS (oral maxillofacial surgeon) and ENT (otolaryngologist). It took some phone calls and a few visits for us to know that often the OMFS focuses on the treatment of the tumor, and an ENT will focus on reconstruction.

Of course, we developed the list of questions, and adapted them for the doctor visits. We also took notes, to compare and put in the computer for later reference.

The experts have different opinions based on experience, believes and assessment of the situation. Initially we were somewhat baffled by the diverse views, but later got better understanding.

• The most important factor driving the treatment approach is diagnosis from the biopsy. The biopsy report is ambiguously stated "this can be considered, ..., but can't rule out ..that". We learned the ambiguity is due to the biopsy being a part, not the whole tumor.  Therefore the discomforting realization -- the tumor is at least as severe as what the pathologist saw.
• Based on the ambiguous diagnosis from incomplete information, the doctor had to make a decision and recommendation.
• In addition, specifics can differ for the same general approach. For example, there is the bone grafting using hip vs. fibular bone vs cadaver bone vs BMP.

At the end, there is no consensus. And, we arrived at the point -- ok, now how do we decide?

The Decision

Our goal was to make a decision by April 1st, an arbitrary date since by then we would have visited all the doctors. It took us a few more days, so we can noodle on the options. One helpful tool is the comparison chart on a whiteboard at the family room.

• 3 rows: Unicystic Ameloblastoma, Solid Ameloblastoma, and Questions
• One column for each treatment
• For each treatment, we note down the advantage (with green sticky notes), risk (red) and possible mitigation (yellow), and simple facts (white).

The idea is to identity a treatment with the least amount of risk that can't be mitigated. 

The key lesson we learned during this process is the importance of seeking multiple opinions, since this is not a common simple disease with singular treatment. Part of the process is also seeking additional pathologist reviews (they call it "look at the slides"), since different pathologist can have different conclusions.

Emotions

We are all much calm now. Part of the reason is, most doctors confirmed there is no need to rush, and we can do the surgery in late May or early June. The time allowed Elvis to finish high school, and take the summer for treatment and recovery.

Also comforting to us are the helps from friends. The encouraging words and wisdom help us more than you know.

Next Steps

The surgery is scheduled for early June, so Elvis can recover during the summer, and be ready for college in the fall.