MickiJ's Story: A Casual Conversation About Family History Led to Genetic Testing
MickiJ is a member of the Breastcancer.org Community.
A casual conversation in a locker room with a gym mate that also happened to be a doctor prompted me to get genetic testing done after we talked a bit about my family history — maternal grandmother died of breast cancer at 55, grandfather diagnosed with colon cancer at 36, mother died of colon cancer at 62, father died of pancreatic cancer at 64. No doctor had ever suggested genetic testing to me — I had never even thought about it. I am the youngest of ten cousins — one of which was diagnosed with colon cancer but no one had any history of breast or ovarian cancer. Given the fact that my maternal grandmother had seven kids in her family and no one else in the family had been diagnosed that we knew of, it was not something that I really thought about. When I went in for genetic testing they expected to find a colon cancer gene — what they found was BRCA1. My brother was tested and he is negative. No one else in my family has been tested. I am 48 and have no birth children.
To me this diagnosis was a gift and deciding to undergo surgery was a no-brainer for me — I would gladly give up my breasts and my ovaries for a chance at living a cancer-free life. I am so grateful for Angelina Jolie going public with her decision because it made it more approachable then I think it would have been otherwise. My breasts do not define me as a woman and making that choice was as easy as making a decision to get my tonsils out. I am a business professional and have a pretty good figure — people would probably describe me as a little vain. I would be lying if I didn't say I am a little anxious about what will happen to my shape after the reconstruction or how I will manage my attire in the interim, but ultimately my vanity isn't worth my life!
If you have BRCA1 but are cancer-free, it gives you the chance to prepare your body and to be as healthy as you can possibly be before going into surgery — take advantage of this! I have always exercised regularly and eaten a diet rich in organic vegetables and lean meats for the most part (indulging now and then) but on January 1st, to prepare my body, I went back on Whole 30, eliminating all grains, dairy and alcohol for 30 days (concept is that you eliminate all inflammatory foods from your diet — your immune system lives in your gut!) and stayed largely with that diet plan up to my surgery (with one cheat day a week to indulge my love for ice cream). I also started a daily yoga practice with 30 minutes of yoga in my living room using YouTube (up to then, had done yoga maybe five times in my life) at 4:30 AM followed by another 30-40 minutes of cardio interval training and weightlifting. I wanted my body — particularly my core — to be as strong as possible. I also incorporated bone broth into my regular diet. I carried a Britta water filter bottle around with me and tried to drink at least 100 oz of water a day.
My surgery was just this past Thursday (it is Sunday morning). I did a bilateral mastectomy (skin-sparing but not nipple-sparing with expander implants) and removal of the ovaries and Fallopian tubes in the same surgery — it was a symphony of three surgical teams and 12 hours. I took that water bottle with me to the hospital and as soon as I was conscience I was drinking water constantly trying to flush all of the anesthesia from my system. I was released from the hospital less than 24 hours after getting out of surgery. Forty-eight hours later, I was off all pain meds except for Tylenol and I feel great.
I was scared. I was expecting to be in pain and immobilized. I'm not going to say it didn't hurt, but the worst thing about this for me is the bloating from the laparoscopic surgery (seriously the worst bloating you can imagine — I look and feel like I am 6 months pregnant), and the drains — they are gross and inconvenient and you can't ever be fully prepared for them. But the important thing is to prepare as much as you can. Read the forums and at least one book (Now What, by Curran Baker, was sent to me by a friend — easy read and super helpful). Be sure to read the forums before buying any of the so-called products designed to help you — many of them are cheap, overpriced and poorly made — but a few are awesome and can make things so much easier for you. (Be careful of reading online reviews outside of forums — as someone who lives in the city and shops largely on Amazon, I've learned that a good percentage of those are fake). My favorite was my Leachco Back and Belly Pillow — it's like wrapping yourself in a big hug. But it's heavy and hard to maneuver so practice positions before you go to surgery and get it situated exactly where you need it and show your caregiver how to position it for you before you go into the hospital.
Everyone's recovery is different and so far, I am blessed that mine has been a positive experience. I share my story only to help alleviate your fears that it isn't necessarily going to be awful and to reassure you that your breasts do not define you as a woman. BRCA1 is not a death sentence — it's an opportunity to take control and make choices before the cancer makes them for you.