I had a follow up (in between scopes) appointment with Dr Kandil today. I have to admit that the drive to Greenville is LONG...2 hours each way for a 10 minute appointment, but Dr Kandil is amazing! He is concerned about ME and how to treat ME. I have NEVER had a gastro examine me so thoroughly...I have no idea what he's looking for or what he expects to find, but he checks my pulse points in my feet, my neck, etc; he feels for lumps under my skin (prone to cysts and bone tumors due to FAP/Gardner's); he listens to my stomach, heart, and lungs; pokes and prods my abdomen. We talk about the uniqueness of having FAP and how doctors sometimes just don't know what to do with cases like mine because as 1st and 2nd generation survivors, we're creating a new frontier and changing what was previously known about FAP...all in the space of 10 minutes.
At the end of today's appointment, he decided that he was more concerned about the formation of adenomatous polyps in my j-pouch. He said that the adenomatous polyps in my stomach are pretty much contained to a certain area that he's keeping track of to make sure that they don't spread from that area in a short period of time or that they grow in size too quickly. He'd like to repeat the endoscopy in 3 or 4 months but really wants to re-scope my j-pouch. Right now, it's scheduled for the first week of June...before the kids get out of school and before we do any traveling this summer.
There is still uncertainty as to whether or not I'll have my stomach removed sometime in the next year, but as long as the adenomatous polyps are contained, Dr Kandil is in support of waiting as long as possible to do it. He's glad that the ball is rolling for me to be seen by the small bowel transplant surgeon at Duke...just to talk about my case and what's involved in having some small intestines added to my system for IF and WHEN it is needed in my future. Thanks to FaceBook, I already know TWO ladies who have had it done...that is what does make technology amazing...all because of God who is awesome!
Thanks for your continued support and prayers.
Tuesday, March 12, 2013
Today was the 1st in what I thought was going to be a series of monthly endoscopies (EGDs) over an unknown period of time to help me keep my stomach for as long as possible. I had hoped to have a better idea of the time frame...like 6 or 12 or 18 months after today's procedure, but I do not. What I do know is that the game plan has changed…again, & I’m fine with that. Dr Kandil has spent a lot of time talking to others to get their input as well as doing additional research. In the process, he has realized that while I do have a lot of polyps (both real and fake), all results so far have come back without any cause for suspicion, and the area of real polyps is small. So, basically, the situation isn’t really as dire as he previously thought and doesn’t warrant doing something as drastic as scoping me each month. Just going under anesthesia each month presents a challenge. On top of that, “burning” areas of my stomach will only remove the polyps from the surface of my stomach, but it will not actually get the roots which means that traces of the adenoma will be left behind via the roots. On the other hand, going in and removing a bunch of them for biopsy will remove the roots, but he won’t be able to cover as large of an area. Another thing he learned is that while I do have some adenomatous polyps which do have a 100% chance of turning malignant in time, the time over which that happens is a lot longer than other areas of the GI tract like the colon & duodenum which are already removed in me.
So, I’ll go back in 6 weeks for a follow-up to see if he’s found anything new to try as well as to get the biopsy results. Of course, he will call sooner than that if anything unexpected is found in the report. Then, I’ll have another scope done 3 months from now with the plan to continue doing this for as long as possible.
Thanks to Linnea Ransom (my chauffeur) and Robin Cooper (potty break for Brownie), Thanks also to you for reading this blog and for your continued prayer and support as I continue to live my life on this journey of living with FAP.