When my journey with breast cancer started, I realized that there was a ton of information out there, so I didn’t know where to start. I didn’t have much time to process the DCIS before I was in surgery and having the cancer removed. Afterwards, all I had to do was wait for my genetic test results. I didn’t find out about these books until after I received the news that I carried the gene, but hopefully, I can help others know where to turn.
My friend, Justine, told me about a book her friend had mentioned. What We Have: A Family’s Inspiring Story About Love, Loss, and Survival by AmyBoesky. I haven’t had a chance to read all of it, but so far it has really touched me. The author was only 32 at the time she wrote the book, so our ages aren’t too far apart. The main difference is that she didn’t have cancer, just the gene, so I guess that’s why I haven’t finished reading it. My situation is just a little bit different.
While I was looking on Amazon at What We Have, I looked through the other suggestions and came across Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer by Joi L. Morris and Ora Gordon. This book saved my sanity. I was reading it up to the moment we walked into the oncologist office. I didn’t want to just skip ahead to the chapters I thought I needed to read, so I was reading so fast because I wanted to get to the chapter about understanding the genetic test results. Finally I had something in writing that explained in plain English what my results meant. I also realized how important a genetic counselor is in this process. I am so frustrated with my gynecologist for not referring me to the only genetic counselor in Corpus Christi. Instead, he chose to have the blood drawn and sent off and then never explained the results. Yesterday, I met with my surgeon and he is going to send me to the genetic counselor because there are still some things we need to talk about like when to tell Haley and when she should be tested. I don’t have that appointment, yet, but I’m getting my questions ready.
The third book I purchased for my Kindle was Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port. I’ve read a few of the chapters, but haven’t finished it, yet either. This book documents 5 ladies who all carry the breast cancer gene either BRCA I or BRCA II. I know that I will pick it back up again soon, but I’m trying to finish the other books I am reading right now.
I hope that if you are ever facing the decision to get tested for the BRCA I or II gene that you find a genetic counselor and also check out these books. I’m sure there are plenty of others out there, but these are the top of my reading list.