Tuesday, July 29, 2008
Biopsy News
Well, we didn't get the news we had hoped for. Though the doctor couldn't visually see any changes from 3 years ago, the biopsies showed change. As I stated before, Sean's stomach was growing into his esophagus. Now, there is a stomach and intestine mixture in the esophagus. The doctor said this is a progressive change. He now has what is called Barrett's Esophagus which means there are pre-cancerous cells present. The condition only develops into cancer in 5% of cases but usually this is an elderly condition. Because Sean is only 20 who knows what will happen. Our GI doc is a pediatric specialist and because of that hasn't really dealt with this condition. He is going to talk to some of his colleagues and see what they have to say. We may have to go see an adult GI doc. Right now he has said that he will need to be monitored yearly instead of every 3 years. I'm trying not to freak out about this but that's hard right now. I am going to research this and see what else I can find.
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4 comments:
Rhonda,
I'm so sorry to hear this. I know it's not all that uncommon with CdLS adults. Especially those who had silent reflux for so long that went undetected and untreated. Hopefully with all the knowledge that is out there now there will be less and less of it. I'm sorry you are faced with this. I don't know what the treatment is for barretts, but I hope it doesn't make life too uncomfortable for Sean. Keep us posed.
I am so sorry to hear of this news. It is so hard to get news that you don't want to get. I am in an unknown territory, but the only thing I tell myself when I am in a similar situation is "one day at a time." Good luck with your research and please keep us posted.
Sending hugs,
Sara
Please know that I am praying for you guys. Of course I don't know what you are going through, but please know all us CDLS moms are here for you!!
My grandmother has Barretts esophagus after years of silent reflux. I think it is more apparent with elderly folks, but then again CdLS doesn't seem to follow the rules. She has been successfully treated with Nexium and the precancerous cells are still the same.
I hope you can find the GI doc you need.
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