TNBC Aware: Getting Past the First Two Months After Diagnosis
Julie Wolfe blogs about the emotional impact of her diagnosis, learning about triple-negative disease and genetic testing, and beginning chemotherapy for triple-negative breast cancer.
It is amazing how important dates stay in your mind. They become part of your narrative, your story. If you hear the story of my diagnosis without the dates, it does not convey the level of intensity. And I am a really intense person.
On Friday morning, December 27, 2013, I had a mammogram and was asked to stay for an ultrasound. As a really big busted 40-something woman, this was not uncommon. What was originally a relaxed ultrasound jumped into high gear. There was something wrong, I needed a biopsy. “OK, let’s go!” I said. But I couldn’t have the biopsy without consulting with a breast surgeon. I was told to come back the following Monday at 8:30 a.m.
My plan was to do the biopsy alone. As my husband took radiographic images for a living, he understood better than I did how bad this could be. By the time I told him about the biopsy he could not take off work on Monday morning. Maybe retail therapy with my visiting sister, a cancer survivor herself, would keep my mind off of it. Nope. Several hours later, at the end of shopping, I say, “By the way…” but she knows the tone and has had the worry. Without discussion, she decided she’d come with me for the procedure. Before the end of the weekend, half my family knew, but not my two other living siblings, my parents, or my stepson.
On Monday, December 30, I had the biopsy and it was official, I knew I had CANCER. Not what type; that would come later. With the holiday and a big storm rolling in, I convinced my doctor to expedite the test results. It was January 7, 2014 at 4:55 p.m. before I finally found out what type of breast cancer I had. It was a quick conversation over the phone with no additional information.
After the biopsy I had no choice but to tell my parents and most of the immediate family. But I didn’t want to scare my parents too much so my husband, sister, and I went together to tell them. It was very reminiscent of the January day 2 years earlier when all the siblings and spouses went to tell them their son, my brother, had died. The next night, New Year’s Eve, my husband and I stayed in. He was so stressed and worried that he went to bed at 9 p.m. I stayed up, hugged my dogs, and cried. When family and friends texted my Happy New Year messages, I texted back with smiley faces and wishes for a happy year, never letting on about the worry and anguish I felt. I wanted so much to tell them all but did not want to ruin their nights with something they could do nothing about. Without a doubt it was one of the worst nights of my life.
Based on the advice of my doctor and the desire to stay as sane and calm as possible, from December 30 which was my diagnosis of cancer to January 7 when I found out I had triple negative breast cancer, I decided to do no research. There was, and is, an unbelievable amount of information online, much of it depressing. When I started to research I made the decision to only visit web sites that ended in ".org." And at the beginning I did not read blogs or comments, only information from reputable sources.
The very first site I visited to find out about triple-negative breast cancer was nationalbreastcancer.org. The site had a very easy to understand graphic and description of TNBC. It was also terrifying. As an overachiever with a sense of humor, I read the site and thought to myself, “Of course I have an aggressive and difficult to treat cancer.”
The first few pieces of relevant information I read are the ones that have become fixed in my mind: TNBC is a very aggressive, fast moving, and difficult cancer; of all the breast cancers it had the lowest 5-year survival rate at 77 percent. Since I was young and of Ashkenazi background it could mean I had the BRACA1 or BRACA2 gene mutation.
Genetic testing was fascinating and critical for me. As I went through the very simple test to determine if I had the BRACA mutations my doctor told me that even though I had traits specific to TNBC she would not be surprised by the results either way. As I waited to find out if I had the mutation I was able to formulate a plan regardless of the outcome. And a plan was exactly what my husband and I needed. Our first plan we called “Scorched Earth.” If I had the BRACA mutations, the plan was for a double mastectomy and a prophylactic oophorectomy (removal of ovaries).
It would also require me to open the door emotionally to my birth mother and her family. I was adopted at birth and over 20 years ago as part of a quest for more family medical history I had found and met my birth mother. At the time there was no mention of cancer, but I did find out that she had given birth to two other children after she had put me up for adoption. With two younger half siblings I would be morally obligated to let them know about my diagnosis.
If I did not have the gene mutation then I had the time to decide on other options and how to handle my birth mother’s family. Luckily, I did not have the gene mutations.
I had the genetic testing on January 15, as it takes a few weeks to get results. The process to start chemotherapy began immediately as it buys survival points in women with TNBC. My port was inserted on January 21 and my first round of chemo began January 24. Throughout the month of January I was constantly told to save my strength because I was sick. That statement infuriated me. I was not sick! I had cancer. Up until the day the port was put in I felt great and looked healthy. On the afternoon of January 21 was the first time I felt sick. Not during the biopsies or multitude of tests, but when they cut me open and inserted the port in my chest on the left just under my collarbone.
January was the month of appointments, all needed to ruthlessly execute my survival plan. Within 20 days of finding out that I had triple-negative breast cancer I was in treatment. January 8 was the first appointment of many. I would like to say that we made a plan and the anxiety, fear, sadness, guilt went away. But that would be a lie. What happened was I took the first step of many on a journey with many twists and turns. I found a way to survive, occasionally laugh, cry a little bit, learn to accept help (gracefully, I hope), and help others as I was also helped. I learned that guilt about being a burden is useless and people want to help you. Terror and fear hold you back. The goal is survival. Determination and a positive attitude are everything.
Julie Wolfe lives in New Jersey with her husband and stepson. She loves cooking and spending time with family, friends and her 3 puppies. She also happens to be surviving triple negative breast cancer and treatment.