MandiG posted:Hello and welcome to the forum. I too am still new to all this. I was diagnosed with FAP in 2014 had surgery feb 2015 and takedown may 2015. My whole family has FAP but I was told from childhood I would not have it thanks to genetics tests. My life has been turned upside down by this news and the events that go along with it.
My advice is to not worry about desmoid tumors until you must. You can make things worse by worrying all the time. My mother and one of her sisters and their mother all had tumors. My aunt did radiation which helped, my mom did chemo which stopped their growth, and grandma had them cut out each time they came back until she died from all the surgeries. It is not something you should stress over as this can exacerbate other issues and make you miserable. Try to take life one day at a time and be patient with your body. I had so much stress surrounding me during my surgeries it is a miracle I lived through it, granted that is in great thanks to all my doctors for fighting when my body was too weak to do it myself. If I have learned anything from this disease and it being in all my female family members it is that no one has the same experience. You may have the surgery and bounce back to normal like nothing happened or you could be like some of us and have issues that seem unbearable from beginning to end. The question is do you have faith that your God would only give you what you can handle with his help? That is where I faulter, I do not have the faith I once did that would have had me sailing through these issues as if they were nothing. I deal daily with pain, and so much that I feel I can not handle. I have issues remembering that I have made it through so many harder times than this.
Do the research and learn about your disease but do not let it scare you until your body gives you a reason to be afraid as this will make the small bombs seem smaller and the large troubles easier to manage.
best of luck to you!
Hi!
I'm sorry you were miss diagnosed in childhood and now have to deal with this. Imagine me never hearing of this before and on top of it being the first in my family! Joking aside, I too feel like I'm in the same boat. Instead however, it has kind of worried my mom a lot and I feel like I'm the one that has to be strong for her rather than worrying much of how I feel about the situation.
I'm sorry youv'e had such a rough experience through all of this. I imagine every experience is different and thankfully mine was caught really early, but I still feel weary about the surgery. Also weary for the changes to go on in my body since I'm really active, and my boyfriend has a fear of blood and scars so hes going to have to just get used to it. Honestly, over the years I'd say I have to a degree lost faith. My brother had leukemia at a young age, and members of my family have a multitude of medical issues, and none of these issues are genetically or feasibly connected to each other. Sure something must be out there, but for a god to create everything in the universe and create parasites that only feed on human hosts making children blind, and many more scary things in this world, it makes you kinda wonder. Sure it may sound kinda horrible but the moment I had in a way banished the idea I suppose, the more I in a way began to love life and the future. I know its not a popular opinion but its how I see life and with everything life throws at me I suppose its easier seeing it as a random act then someone thinking I can handle so many horrible things. So thats my view.
I also wish you the best of luck in your travels, and good health.
SIde note, meditation has significantly helped me in my life and it may help you as well!