Monday, November 23, 2020
Home / Power Stories / Luz’s Story (Cowden Syndrome)

Luz’s Story (Cowden Syndrome)

Luz's Story (Cowden Syndrome )I never been the type of girl who likes to share. I have always been a little nervous about it. This time I feel really different about it and I will like to share, if that’s okay with you!?

It started at such a young age, I was always getting sick. My mom was so scared and worried, so she made an appointment to see a doctor. I went through so many exams that I had no idea what was going on. I was diagnosed with cowden syndrome. Cowden’s is a mutation of the P10 gene which is the tumor suppressor gene. I kept getting sick that it got to the point were I lost blood and I needed to have a blood transfusion. A little while after that I needed to have stomach surgery.

My entire life I was surrounded by doctors. I assumed that I had bad luck and eventually I’d grow out of it. I wanted my life to be as normal as possible. I never thought I was going to have any more surgeries or blood transfusion, until my 20’s came and things got hard to deal with. I was diagnosed with a right brain tumor. It was called right a cerebellar dysplasia tumor. It was so big that I was having some problems and I needed to have brain surgery. Thank god everything went well. I spent about a week or so in the hospital. I had such a great neurosurgeon he was able to remove the whole tumor. I was in a little bit of bad shape but I knew in a few months everything would be back to normal.

So time passed and I was right. Until I had a visit with my oncologist, she read my test results she had notice my blood count was low, and I need a blood transfusion. At the age of 24/25 doctors began suggesting that I should have a prophylactic mastectomy to manage my breast cancer risk. The doctors knew my risk was super high, because of the Cowden’s, and what happened to my mom. At 33 years old my mom passed away of breast cancer. Doctors knew I had to take care of the risk, I had so many biopsies and mammograms and they knew time was running out. At 26 years old I had a double mastectomy. 

It has been a long and emotional journey so far. But I couldn’t be happier with my choice. Whatever life and Cowden’s syndrome throw at me next, I know I can beat it! I am a fighter and a survivor.. giving up is not an option for me.

Luz
New York
Submitted 05/17/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

Check Also

Jessica’s Story (Cowden Syndrome)

It is easy to stare at a blank screen and not know what to write. …

3 comments

  1. You are such an inspiration! Such a strong and empowering woman to share such a personal obstacle as motivation to strengthen yourself and others that things do get better rather than gain sympathy. Wonderful story. I’m glad I read this and got to know into detail what exactly you were diagnosed with.

  2. Bravo, Luz! You have not only shown remarkable resilience in weathering all of adversities life has thrown at you, but you also had the courage to share your experiences with us. I’m sure your story will provide comfort and be an inspiration to other young woman facing such difficult health choices. You’re a gem!

  3. Thank you for sharing, you are not alone. michelle and I both have Cowden Syndrome and shared our stories here. I recently started a foundation to educate, help patients and encourage research for PTEN patients. Check out ptenfoundation.org.
    Kristin

Leave a Reply

Your email address will not be published. Required fields are marked *