I have been diagnosed with a Duodenum gastro Intestial stroma tumor

TeriK · ‎02-24-2016

I have been diagnosed with a DGIST anyone know anything about this? It is apparently a very rare cancer. I am so scared!

qualitygal · ‎10-04-2010

Did you go to Google? Did you go to WebMd? That's where I'd start. I have no idea, nor have I ever heard of it. I'm sorry, I'll pray for you. Get as well-informed as you can, ask questions. That is a patient's rights.

StephfromIdaho · ‎03-03-2016

Please do all the research you can and be your own advocate. Listen carefully to your docs. All my,best to you.

Dawnie · ‎03-09-2010

Research, research and more research. Look for a gist forum. I know of a young girl age 12 that had it. She had surgery with a specialized doctor and was fine. It came back 10 yrs later, more surgery is fine now. Working and in college. Her specialized Dr was in Miami. I’m praying for you. Hugs.

Swedishmiss · ‎04-21-2010

I am so sorry you are going through this. I will be praying for you, Teri.

OfCourse · ‎08-26-2017

I'd be careful about googling because you can get very upset and get bad info. I no longer google medical info because I get mixed up and unnecessarily scared. I wish you all the luck in the world!

x Hedge · ‎08-18-2016

Find yourself a doc with some past experience with this cancer. Many have no expertise, and since not much is known about GISTs, their personal experience is important. My oncologist is excellent, and even my PCP has 2 other GIST patients in her practice.

And stop worrying. Worry is self destructive.

MalteseMomma · ‎03-09-2010

@x Hedge I am so sorry Ins companies are giving you more problems.

I will keep both you and @TeriK in my prayers

TeriK · ‎02-24-2016

I did at first start googling then I found a forum of people with it. That is a lot better they actually have been through this and know about it. Thanks.