Good-bye RAD001, I'm a lucky 1%er

Monday was my last day to take the study drug RAD001 (aka Afinitor by Novartis Oncology). I am still considered “on” the clinical trial until all of my chemotherapy has been completed and I have been cleared for surgery; but I will no longer receive any drugs out of the ordinary for my stage and type of cancer. It is bittersweet ending my study drug, Cody and I have such hope that it will help. Yesterday I met another triple-negative patient in the waiting area who was 39 and her mother died of breast cancer at 33. She was searching for a mentor, someone who was a 5-year survivor of triple-negative breast cancer and currently in their 30’s or 40’s. They have been looking for a mentor for her since November and can not find one. This means that either there are no five year survivors in their 30’s or 40’s, or it means none of them want to be mentors. Yesterday on the way home Cody said that this was scary. This is the first time that I’ve heard him use that word. Let’s hope that the study drug did what it was supposed to do and made the cancer cells more receptive to the chemotherapy drugs.

Friday I received a phone call with my genetic test results – they are negative. So I am one of the lucky people who got cancer, and they have no idea why. I’m going to call myself one of the lucky 1%ers (7% of women diagnosed with breast cancer in a given year are under the age of 40, and less than 1% of those women have no genetic mutation). I’m sure it is an even smaller group if you add in my triple-negative status but that gets way too depressing. What my results mean if you are my cousin – you do not have a cousin with a BRCA 1 or BRCA 2 genetic mutation. Your risk of breast cancer does go up, so say as high as 40% - 60% above the general population, and it would probably be a good idea to get a mammogram early to develop a base line; but I would talk to your doctor about the issue. Please make sure that your doctor is aware that I was diagnosed at 33 with Stage II, T1N1M0, triple-negative breast cancer. Your children should also be aware that they have a relative diagnosed with triple-negative breast cancer at age 33. Their doctor should be able to help them make the decision on what to do with this information when they are older. Who knows, by that time one of the studies that I did on early detection may be the norm for testing :)

Today I’m going to rest and take pictures of the hats. I hope to post them tomorrow.