After meeting with the surgeon in February, we decided it was time to get a second opinion. We never felt the need to get a second opinion on the diagnosis, but we wanted to make sure that it was the right time for surgery. So, we made an appointment with the GI doctor that the surgeon recommended to us. We finally saw him the end of March. (This post is way overdue! Sorry!)
Dr. M was very nice and, more importantly, actually has experience with FAP patients. He has both pre and post surgery FAP patients which makes him a good bit more experienced than Dr. B. We shared Wesley's story with him. Like most of the other medical professionals we've met along this FAP journey, he was quite interested to hear the story of Wesley's diagnosis.
Dr. M told us he would recommend holding off on surgery for the time being. Surgery would become necessary when the polyp count is around a thousand. We were a bit surprised to hear that since the surgeon said 20 polyps! He asked us to request a copy of the biopsy results for him to look at before he made a final decision, but from what we told him about the verbal results he said we could wait. Personally, I was happy to hear this. We know the time for surgery will come eventually, but I would like to see Wesley stay whole for as long as possible.
Dr. M also said he was glad to see Wesley was already taking Sulindac since research shows it can slow polyp growth. I was happy to hear that as well because insisted Dr. B put him on it even though he didn't think it would really help. He did suggest a different antacid to go along with it, so we got a prescription for that.
The plan now is to follow up with Dr. M in July. At that time he'll do an exam and see how things are going. If all is well, we will schedule another colonoscopy in December. Having Dr. M do the colonoscopy this time will get us another (second) opinion on the polyp count and how best to proceed. Good news... he does procedures right in his office so we won't have to go to the hospital. We were super pleased to find that out.
We were on the surgeon's schedule for May 2nd, but called and cancelled. Well, it's really more of a reschedule with an unknown date. We had been working really hard to stay on track with school work so we could have it all done before the surgery. Praise God, now we can use that time to swim or read some fun books! Keep praying and stay tuned.
Quick update: Jerry and I finally got our genetic test results. There were no surprises. Both of us tested negative. This doesn't change anything as far as Wesley's treatment goes. It just means the chances of any of the other kids having FAP are pretty much zero. Knowing this we have decided not to test any of them. Of course, we will keep watch for CHRPEs or osteomas or any other issues plus probably suggest earlier than recommended colonoscopy for them in the future.
