By meechell83 October 4, 2010 - 9:41am

I am 26 and have a genetic disorder called Cowden's Syndrome. In addition to other things, it causes me to have a higher breast cancer risk (so high, that my doctor has told me "it's not a question of if, it's a question of when.") I also found out that my biological mother (I'm adopted) has just recently had breast cancer. I have not been diagnosed yet, but last year I had a close scare when a lump was found with DCIS cells. Amazingly enough, there were no cancer cells evident. The doctor said that we must have caught it in the early stages before cancer cells could develop.

I'm now seeing an oncologist to "manage my risk." I have a mammogram and breast MRI scheduled for tomorrow and to be honest, I am terrified. The doctor has done all he can to prepare me, but I'm still freaked out. He has told me that I'll go through the whole routine of mammogram, ultrasound, Breast MRI, core biopsy, lumpectomey several times. The last time I had a mammogram they found nothing (thank goodness.) but it doesn't keep me from being scared.

I have decided to have a double mastectomy with reconstruction in the case that I do get diagnosed. Several doctors have acknowledged that this is the best thing for me, because my risk is so high that cancer would just reoccur if I just had a lumpectomy.

Any words of encouragement, advice, etc would be greatly appreciated. I would like to hear from people who had the double mastectomy (how it affected you, recovery time, etc)

Thank you so much in advance. Any breast cancer survivor is truly inspring to me.

On an ironic sidenote- the cowden's syndrome has caused various benign tumors, including a brain tumor. I've had 11 surgeries and have decided to go to nursing school. I feel like if I survived all of this, I need to "pay it forward" to others who may be going through the same thing.

Once again thank you so much for listening to me ramble! I'm glad I've found the one place that people will truly understand what I'm feeling right now. :)