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Diagnosed...now what?

January 27, 2017

My cousin, Summer, spent the day with me and my daughters as we waited to get the call from my doctor. Having her there with me that day was exactly what I needed. She makes me smile; she makes me laugh and as her “big cousin” she may not know it but she pushes me to rise up and be an example of strength.

 

As I said, I wasn’t exactly surprised by the news but it was still difficult to hear. After I hung up with my doctor we just looked at each other for a few minutes. I told her I’d be fine and I’d figure it out then we said, “You know what…cancer is going to have to wait.” So we loaded my kids in the car and went to get some frozen yogurt.

 

My dad called while we were attempting to sugar coat the sting of the diagnosis. He knew I was waiting on biopsy results. I didn’t want to tell him but I needed to get it over with so I took the call out in the parking lot while Summer stayed with the girls. It was so good to hear his voice. With him, I could drop the tough mom, tough cousin, tough girl act and fold myself into his strength. He always knows what to say and assured me things were going to be okay. He said, “Bonz, this is a chapter. That’s it. We will get through this chapter just like many of the others we’ve gotten through.”

 

I received a call the next day from my local hospital; they had scheduled an appointment for me with a general surgeon and wanted to see me as soon as possible to schedule surgery. Keep in mind I hadn’t discussed surgery or ANY of my options with a doctor yet but I was already getting tunneled into a treatment protocol. Isn’t that nuts? I actually knew the wife of the general surgeon. I knew he was highly respected and the person who called from his office assured me he did these oncological surgeries all the time. I wasn’t about to go through with that appointment without doing more research and figuring out exactly what my options were. I finally started thinking and realizing I was going to have to navigate this myself.

 

And that’s what I did, however, I had a bit of an advantage. My young (in her twenties) sister-in-law was only a few short months out from her own breast cancer diagnosis. Although she had a very different type of cancer she is also an amazing nurse and had lots of information to share as well as doctors she recommended, etc… Unfortunately, her medical group would not take my insurance but it was a blessing being able to talk with her and know she understood exactly how I was feeling. We ended up choosing different treatments paths but I have the utmost respect for her and all women who are faced with these incredibly difficult choices.

 

From there I started googling everything I could on Invasive Breast Cancer and treatment options. Of course, I proceeded to get extremely overwhelmed with all the conflicting information and negativity. I was desperate to read real accounts from women my age with similar diagnoses but at the time it wasn’t easy to find detailed stories outside of chatrooms and private groups on social media. So I turned to books and started reading Waking the Warrior Goddess as well as Radical Remission.

 

After meeting with a few Oncologic surgeons, I ended up scheduling surgery with a respected young female surgeon at Sutter in Roseville, California. She was good; very aggressive but good. She strongly encouraged me to do a single mastectomy of the left breast (complete removal of the breast, muscle and chest wall) but suggested, actually pressured me, to consider a double mastectomy as well. I wasn’t convinced either of these would be the best option for me. I was more interested in a lumpectomy or partial single mastectomy. I was more interested in finding out why I got cancer before I agreed to anything that I thought to be radical and extremely intrusive. Some women feel differently; they want to rid themselves of the problem by completely removing the body parts that are infected with the disease. I understand this but I knew I couldn’t do anything I wasn’t confident with and again I wanted more information.

 

When I met with Sutter I was assigned a Genetic Counselor. We had done some basic genetic testing to see if I had the most common genetic mutations for breast cancer – BRCA1 & BRCA 2. We also did testing to get a more comprehensive genetic profile to check for the more uncommon & recently discovered mutations linked to cancer. This more extensive test takes 6 weeks or more for results. I wanted to wait for those results but after finding that I did not test positive for BRCA1 or BRCA2, I agreed to move forward with surgery. I had a lumpectomy surgery with immediate reconstruction on June 10th, 2014, but when I woke from the procedure I was told my surgeon had taken over 30% of my left breast, muscle and portions of my chest wall – this is called a partial mastectomy. I was also told that micro-invasive “cookie crumble” cancer had been found in adipose tissue near the main incision line traveling back towards my armpit and microscopic amounts in 2 out of my 3 lymph nodes removed. None of this had shown up on mammograms, ultrasounds or an MRI I had prior to surgery. Not good news.

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