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26 years old and scared....

By 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. :)

By HERWriter Guide November 8, 2010 - 5:48pm

Hi meechell83 - We haven't heard back from you since you first wrote in October, so I wanted to check in with you and see how things are going. How did your mammogram and breast MRI go, and did you need additional tests? Are you feeling better these days, or are you still scared? Please let us know how you're doing, and how we can help. Pat

November 8, 2010 - 5:48pm
By HERWriter Guide October 4, 2010 - 7:01pm

Hi meechell83 - I don't think you rambled at all. You seem like a bright, articulate, well-informed young woman who is facing her situation head on. You have already experienced a lot in your life, including 11 surgeries, and it sounds like you've gained a lot of knowledge about navigating the healthcare system and are wise beyond your years. Many of the qualities you should would make you an excellent nurse, and I want to applaud your decision to go to nursing school.

I am a 23-year breast cancer survivor, and I was diagnosed with leukemia one year ago. My treatment is going well, and yet there are still times that are very scary. If YOU weren't scared right now you would not be a human being.

I'm also the Cancer Guide for EmpowHER and am really glad you've found us. Have you had a chance to look around the site at all? We have information on multiple aspects of breast cancer and threads with comments from other survivors. I suggest poking around a bit and, also, if you have specific questions I would be happy to help you with resources on and outside of our site.

One site that I like in terms of helping organize and keep track of things is Navigating Cancer. http://www.navigatingcancer.com/ While you're being proactive so that you don't have to manage cancer you may still find the tools on the site helpful.

And, if you haven't seen the new data on breast and ovary removal to reduce cancer risks, you can find the news story here: https://www.empowher.com/breast-cancer/content/breast-ovary-removal-can-lower-cancer-risk

meechell83, I'm looking forward to your being an active and contributing member of our site, and I'm glad you found us. We can learn a lot from you.
Take care,

October 4, 2010 - 7:01pm

Group Leader

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