Before I was diagnosed and in the we-don’t-know-what-that-is-we-need-more-testing phase, I remember sitting in my car in the parking lot of my obgyn’s building. I’d just left her office with orders for a mammogram and ultrasound. I was on hold with the imaging center and was silently crying. In my head, all I kept thinking was “I don’t want to be a statistic…I don’t want to be a statistic.” Of course, we know how that worked out for me.
I remember crying on A’s shoulder right after I was diagnosed and saying I was statistic. He looked at me and said, “You’ve been a statistic since you were born,” which is true, but I didn’t want to be this kind of statistic. I didn’t want to be the 1 of the 1 in 8 women. I had a .4 percent chance of developing breast cancer at 37 using the NCI Breast Cancer Risk Assessment Tool. Yet, here I am.
My attitude over the last week has become “it is what it is.” I’ve also started automatically answering “I’m fine” or “I’m ok” when people ask how I’m doing. I did that to my childhood BFF on Friday, and ooh, the glare I got from her. She knows me better than that. We’ve been friends since we were five (yes, really…we met in kindergarten), and when I said, “I’m ok,” she glared and said, “Ok. Try again. Those of us who love you know you better than that and want the truth.” So, I told her the truth.
On Friday, I was brooding over a decision I’d made Friday morning at the radiology oncologist’s office.
When I saw Dr. D on Thursday, he presented us all the options, but he left one thing up to me: did I want to opt for radiating the internal mammary lymph nodes?
I decided yes, I did want that option because I want to be as aggressive as I possibly can. And, at my follow up with him on Friday morning, I told him yes. Then, we did mapping and simulation. 28 sessions of radiation begin either Tuesday or Wednesday. Dr. D told me he wants some extra time to really fine-tune the radiation since I’ve opted for internal mammary lymph node radiation. See, here’s the issue. My breast cancer is left sided. Those lymph nodes sit right behind my sternum. Guess what’s on the other side of those lymph nodes? My heart. Yeah. There’s a chance of damaging blood vessels leading to my heart. There’s a chance of damaging my heart. Being aggressive means radiating those lymph nodes. So, now, I can add a statistic for heart damage to my growing list of numbers.
I already have a 2-8% of damaging my heart with herceptin. But, I want to live. I want to give myself every chance to see S and AJ grow up and to spend more years with A. In order for that to have a chance to happen, I have to take herceptin for at least 1 year, I have to do 28 sessions of radiation, and I have to take an estrogen blocker for at least 5 years, if not 10 years.
I’m not making these decisions lightly or without research. I’ve read the NCCN’s Patient’s Guide to Stage 1 & 2 Breast Cancer. I’ve read the ECC 2013 study on radiating the internal mammary lymph nodes (IMC-RT). I’ve read study presented at the 51st ASTRO meeting. I’ve read the article that appeared in the Journal of Clincal Oncology November 2015. I’ve read the article on breastcancer.org about IMC-RT. I’ve read the article discussing study results of IMC-RT in the July 2015 New England Journal of Medicine. I’ve read the study results presented in the June 2013 International Journal of Radiation Oncology. I’ve read the study results presented by Romestaing. I read and read and read. I probably read about the same study multiple times. I really didn’t make my decision lightly.
That doesn’t mean I like my decision.
But, I want to be aggressive.
And, I know I can be aggressive and do everything “right” and still die from this breast cancer.
So, here I am.