Genetics Everyone is different

A couple of  new  friends encouraged me to start writing. I  have still my doubts. One of the things I am learning is everyone’s journey is different. Genetic testing found me. True cancer runs in my family. My dad passed away from colon cancer at 42. The other side of the family has health issues too.  Thyroid problems are like wearing glasses, both have been around for a long time. I got pointers from my sister on what to expect about the mammogram.  My Breast cancer at 42 surprised everyone. My first mammogram was a baseline mammogram, it wasn’t suppose to find an early stage breast cancer.

Cleveland Clinic

Early 2008 I was in Cleveland Clinic,  J came in my room from genetics. She explained about PTEN gene and Cowden’s Syndrome. Yes that sounded like me, but I was having heart failure problems. I just wanted my medicine adjusted to feel better and get back to work.  J came back with  Dr. Charis Eng MD. PhD. of the Genomic Medical Institute at Cleveland Clinic. J talked more about Dr. Eng, her research  and  I think she did a family tree. I finally agreed to get tested. They took a whole lot of blood. I forgot to asked how long the results would take, how much does genetic testing cost or who was paying for the testing. I felt better and went back to work.

Carry On Nurse

Carry On Nurse (Photo credit: Wikipedia)

Fast forward to January 2009. The day before my colon cancer surgery, I was  at the main campus of Cleveland Clinic meeting with my colon surgeon. There are lots of forms to  sign. Different nurses approach me about helping with colon cancer research, being on there registry. In the middle of all this J comes in the room and says yes I have Cowden. J talked about my many new options about my breast. I was hot, tired, scared. Waiting for me at home was the colon cleaning prep. Tomorrow was my colon cancer and liver biopsy, J is tell us I can get my breast removed, right colon removed tomorrow. They would only have to put me to sleep once.

Everyone is different. I learn that every day. Cancer is hard and it doesn’t matter what kind of cancer or how anyone deals with it. All cancers are different, not better or worse just different. Last year a female family friend passed from cancer. She had ovarian cancer since 2007. The same stage has my colon cancer. My sister knew her since brownies. We rode to high school together.  She  was in the Navy  just like me.  Ya I understand!

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7 Comments

  1. WOW. Do you feel “lucky” that you were so close to the Cleveland Clinic? I just got my paperwork in the mail this weekend TO FINALLY get enrolled in the PTEN study….even after seeing the geneticist LAST YEAR who assured me she got the ball rolling and got me enrolled in the study.

    Did you do both surgeries at the same time?

    • I live about 25 miles from Cleveland Clinic Main Campus. Our local hospital is part of Cleveland Clinic.I just had my right colon removed the next day. I had many colon cancer symptoms and felt horrible so removing my breasts the next day was not an option. I am surprised you are not in the study. Dr Eng has another study of breast cancer tumors of people with Cowdens. I think it has something to do with after having breast cancer what is the chance it will return. She needed permission to get my tumor. Last year Cleveland Clinic had an educational day about genetic colon cancers. They hope to have that again this year.

  2. Wow – you live so close to Cleveland Clinic. Imagine that chances of them being “the research place.” I signed up for the study, but other than returning the blood, I haven’t heard from them. Do you ever hear from them — other than when you are there for procedures?

    • All of my doctors are part of Cleveland Clinic most have office hours closer to my home than downtown Cleveland. I have heard from the J three times after giving blood for the research. J told me I was positive for Cowdens in person at my colon surgeon appointment the day before my colon cancer surgery. I a letter about the updated Cowden screenings and a copy of the Cowden research. Last summer I got another letter. They had started research about percentage of breast cancer returning to persons with Cowdens who all ready had breast cancer. They wanted permission to study my breast cancer tumors.

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